PROJECTThis report was prepared under a Cooperative Agreement between Muskie School

of Public Service and Maine Department of Health and Human Services with funding from the federal Centers for Medicare & Medicaid Services.

A grant-funded project for the Maine Personal Assistance Services Association to highlight its members and the work of caregiving and support.

Our Stori

3

Presented as part two of a two-part report

on the development of a worker association

“The Our Stories Project can only provide snapshots of the work they do everyday. We hope it will help us all to see how vital and

amazing this work, and the people who do it, truly are.” - Jocelyn Barrett

A grant-funded project for the

Maine Personal Assistance Services Association to highlight its members and the work of caregiving and support

PROJECT

OurStori

4

Staff AcknowledgmentsOral History Project Specialist, Jocelyn BarrettJocelyn is the author (interviewer and transcriber) of the Our Stories project. This capstone to her Bachelor’s degree in Women’s Studies and English from the University of Maine at Farmington was completed with the personal insights into direct care from her own work as a personal care attendant and dietary aide. Jocelyn brought both personal and professional skill to the interviews, applying the oral history methodology to tell the stories in the workers’ voices.

Photographer: Priscilla deBree, Studio 148, Portland, MaineGraphic Design: Christine Richards, Richards Design & Production, Portland, MaineProject Staff: Elise Scala, Project Coordinator Lisa Marie Lindenschmidt, Project Assistant and Website Design Sherry Gildard, Administrative Assistant

For More InformationFor additional copies of this report or to receive it in other formats, please contact Elise Scala, Muskie School of Public Service, P.O. Box 9300, Portland, ME 04104-9300, Voice: (207) 228-8423, TTY: (207) 780-5646, Email: scala@usm.maine.edu. The Our Stories Project is also available on the Maine PASA website: www.mainepasa.org.

If you would like more information about the Maine Personal Assistance Services Association (Maine PASA), please contact Roy Gedat, Executive Director, Maine PASA, P.O. Box 710, Norway, ME 04268, Voice: (800) 268-6612, Email: rggedat@exploremaine.com.

This report was prepared under Cooperative Agreement No. IOA-202007 between Muskie School of Public Service and Maine Department of Health and Human Services. Sponsored by the Maine Department of Health and Human Services, with the participation of consumer groups, advocates, and other state agencies. The State of Maine does not discriminate on the basis of disability, race, color, creed, gender, age, or national origin in admission to, access to, or operations of its programs, services or activities, or its hiring practices. This document was developed under Grant No. P-921540/I from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. However, the contents herein do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not infer endorsement by the federal government.

U N I V E R S I T Y O F S O U T H E R N M A I N E

Muskie School of Public Service

This report was produced as part of the development of the Maine Personal Assistance Services Association (Maine PASA). Maine PASA currently oversees the Our Stories series.

i

Our Stori ProjeForewordThe Maine Personal Assistance Services Association, Maine PASA, was established with grant funds awarded to the State of Maine Department of Health and Human Services by the U.S. Department of Health and Human Services’ Centers for Medicare & Medicaid Services through a Real Choices Systems Change grant. The Our Stories Project was completed by the grant staff to meet the objectives of the grant and, in doing so, support the development of Maine PASA. This publication is part two of a two-part report to the funders to demonstrate the work that was conducted for the grant. It should also serve to recognize the people employed in direct care, direct support and personal assistant jobs, their dedication, and the true value of their work. We would like to recognize and thank our authors, for these are their stories: Roberta, Arlene, Mike, Jennifer, Susan, Karen F., and Karen B. The interviewer and project specialist, Jocelyn Barrett, explains why the oral history was used to gather the stories:

I believe that everyone has a story to tell and that there is someone, somewhere, who will connect to it and learn from it – but how many people ever get a chance in their busy lives to sit down and write their

own story? Most people, even if they could, don’t think that their experience is “important” enough to tell.

It became very clear in the early stages of the project that the people who work in direct care, direct support jobs and as personal assistants for people with disabilities and elders have very important stories to tell. Seven people agreed to be interviewed and share their stories with Jocelyn. The stories tell why recognition of workers and consumers is needed and how an association, like Maine PASA, could support them. Each story describes the work of caring and support—in ways that transcend the realities of low wages, poor benefits and limited employment security—to reveal the nature and quality of the work. The stories, therefore, and this project, have potential for serving the long-range goals of raising awareness to recruit more people into this field and improving the quality of their jobs. This will be the future work for Maine PASA. The successful completion of this grant provides a foundation for Maine PASA to accomplish its mission:

to build recognition and opportunity for the direct care, direct support, and personal assistance workforce through

education, professional development, and public awareness.

iii

&Introduction Background

Our Stori ProjeThe Our Stories Project was completed over an eighteen-month period through 2004 and 2005. It was conceived of as an activity that met the objectives of the grant and the mission of Maine PASA.

The GrantThe Maine Personal Assistance Services Association, Maine PASA, was started as a project within the Real Choices Systems Change grant awarded to Maine by the federal Centers for Medicaid & Medicare Services to support the improvement of home and community-based resources and services for persons with disabilities. The grant partners, the Maine Bureau of Medical Services and Maine’s Plan Development Work Group for Community Based Living, supported the Muskie School of Public Service at the University of Southern Maine to launch Maine PASA in 2002. The project goal was to increase the availability of qualified personal assistance workers in Maine through the development of a guild or association that would build the capacity of workers through an association as modeled in Iowa and North Carolina.

Maine PASAThe mission of the Maine Personal Assistance Services Association is to build recognition and opportunity for the direct care, direct support, and personal assistance workforce through education, professional development, and public awareness.

Maine PASA activities and programs will:• build recognition to raise the awareness in public,

employment, and policy settings about the value of direct care, direct support and personal assistance work and workers.

iv

• build opportunities to provide opportunities for workers to network, to build connections, to participate, and to gain knowledge and skills to attain personal and professional goals.

• promote professionalism to advocate for quality jobs and to promote quality direct service with dignity and consumer choice.

Organizing the ProjeThe development of Maine PASA revealed needs and created opportunities that lay the groundwork for the Our Stories Project. In addition to answering questions like “What’s an association?” or “Is this a union?,” we had to explain who direct care workers were and what they did. When we sought answers from the workers, we learned about the variety of job titles—Direct Support Professionals, Personal Assistants, Personal Support Specialists, Homemakers, and Personal Care Attendants, for example. The diversity of members and their range of jobs, work settings, consumers and clients informed us that we would need a number of stories and a way to help people tell them. A timely introduction to Jocelyn Barrett connected the interest in telling the stories to a plan for organizing and writing them. Jocelyn’s work as a University student and intern conducting an oral history project provided the grant staff with the qualified staff person needed. Jocelyn completed the University of Southern Maine Office of Research Compliance and Institutional Review Board requirements and her procedures and informed consent document were approved. While the oral history interviews were exempt as a research protocol, the materials were very useful and assured consistent communication with participants and a clear workplan for completing the project.

Writing the StoriThe oral history methodology and Jocelyn’s writing and work experience were instrumental in assuring that the participants were comfortable and engaged in the interviews; the resulting story, therefore, was always in their own words. This involved multiple meetings and drafts. Jocelyn tape-recorded interviews and prepared transcriptions that allowed the participant to edit and correct their responses. A second interview was conducted with all participants and some met three and four times to complete the final story. One of Maine PASA’s founding members, Roberta Record, who had been writing articles for the newsletters, agreed to be interviewed first and worked with Jocelyn to tell her story. The response to Roberta’s story encouraged Roberta to continue her own aspirations as a writer and provided a very powerful depiction of elder care

v

needs and of the job of home care. The following six participant interviews opened other stories, each told in a distinct voice. Each person expressed their gratitude for the opportunity to describe their work to others. We even got feedback from family members and supervisors who expressed their heightened awareness and appreciation. Members told us they had a better understanding of the range of work that is too often generalized under the headings “direct care” and “caregiving”—or worse, “butt-wiper” or “maid”.

Telling the StoryThis publication is a report of the Our Stories Project. The Stories have been published in the sequence they were written. Each story has been published on the Maine PASA website (www.mainepasa.org) and excerpted for inclusion in the Maine PASA newsletter. Maine PASA’s website is featured on the National Directcare Clearinghouse website (www.directcareclearinghouse.org/index.jsp), Voices from the Frontline; and is linked to other direct care work sites. A display board featuring the titles and photographs was also developed and has been presented at numerous conferences with Maine PASA members.

FutureA primary outcome of the grant is that Maine PASA has transitioned from being a grant project to a non-profit 501c(3) organization. Maine PASA is now a coalition of Maine workers employed in jobs to provide assistance and direct care to elders and people with disabilities and concerned stakeholders. As a worker- and member-based organization, Maine PASA involves workers directly in the development and operations of their association. In 2005 Maine PASA has over 600 members statewide and an active Board of Directors. Direct care and support workers serve in leadership roles and regular activities in the state through contributing to its newsletter and website, attending conferences, representing Maine PASA on state policy and workplace practice committees, and presenting to the Legislature. The growth of Maine PASA and the outcomes of the Our Stories Project have demonstrated that workers have a story to tell and when supported to tell. When provided the opportunity, workers can serve an important role in ensuring quality in long-term care practice and policy.

1

Warmth and Wisdom Roberta Rord’s Story .. .. .. .. .. .. .. .. .. .. .. ..2Common Sense and Patience Arlene’s Story . .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. .. ..6Compassion and Insight Mike Jone’s Story . .. .. .. .. .. .. .. .. .. .. .. .. .. .. 10What We Teach, What We Learn Jennifer Grodewald’s Story . .. .. .. .. .. .. .. .. 14An Open and Loving Heart Susan Tucker’s Story .. .. .. .. .. .. .. .. .. .. .. .. 18Someone to Care for Caregivers Karen Bra’s Story .. .. .. .. .. .. .. .. .. .. .. .. .. 22Thriving on Challenges Karen Farrington’s Story . .. .. .. .. .. .. .. .. .. 26

Our Stori PROJECT

2

RWarmth and Wisdom: Roberta Rord’s Story

Learning Something New All of the TimeIn the latter part of 1995 one of my male friends was dealing with his mom who needed 24-hour care. She was 93, and she was only going to live thirteen days. A home health nurse had predicted when this woman was going to die. At the time I didn’t have any opinions about that, but I’ve developed them now. Nobody has the right to say how long somebody is going to live. In my job, elders will say to me, “Am I going to live or die?” And I say, “It’s up to you. If you don’t want to eat, then you can count on dying. If you want to live a little while longer, you need to drink your Ensure.”

So I was hired to go over and spend time with this woman, Lena*. I would come in with these little projects because I figured that I needed entertain myself from the boredom of doing nothing. Well, evidently she caught on, because she started having the time of her life. I would go over and bring her newspaper to her, tell her what was going on in the community. I started reading poetry to her. She was only supposed to live thirteen days. That thirteenth day things were kind of heavy. I walked into her house and I said, “She’s supposed to die today.” Well, it turns out I was with her from January to November. It was like maybe God wanted me to spend some time with her – more than thirteen days – before she passed on.

OBERTA RECORD is a dedicated PCA who lives and works in the Augusta area. Her caregiving experience with elders began when she took over her mother’s business in the early 1990s, which provided in-home support and care to elders in the community. “At that time,” Roberta says, “families would pay people in the neighborhood to help them. I don’t know how long the agencies have been in existence that are providing homecare, but this was word of mouth—who you could network with.”

Having worked for a homecare agency for six years, Roberta faces the challenges and triumphs of her day-to-day experiences with a creative and loving spirit. She is committed to lifelong learning, and is active in groups, reads, and creates collages and paintings that cover the walls of her modest, comfortable apartment. Some of her collages tell the stories of elders she has cared for and learned from in her time as a PCA. The wisdom Roberta has gained from her caregiving experience shines through when she tells a story about an elder that was dear to her. Roberta is a storyteller, whether she’s writing, making collages, or talking about her work, what she gives to those around her is colorful and rich.

I think that one thing that has made my work so rich is at I learn

from being with the people —somim quite personally.

3Our Stories

Continued on page 4

We would take imaginary trips. Lena used to be a teacher, and I have some background in teaching, too. She would say, “I’m not going to teach today. I’m going on vacation.” And I’d say, “Where do you want to go?” She had this set of encyclopedias of different countries that we would read and explore together. I thought, “Wow, I’m learning something new all of the time.” I think that one thing that has made my work so rich is what I learn from being with these people – sometimes quite personally. One thing that I face all the time is tapping on my childhood. Lena was Lebanese and she told me that back in the thirties she went with a group of teachers over to the Middle East and saw Jerusalem, and it just blew me away. I thought, here I am trying to deal with my mother, who doesn’t even want me to get an education. And yet this 93-year-old lady had taken a trip to the Middle East all by herself with a group of women.

Shifting RolesThrough my homecare business I had this one elder in Monmouth who was feeling sad about his wife, the anniversary of her death. So I said, “Would you like me to take you out to breakfast to celebrate her life?” He liked that. I’d take him over to Sabbattus and he’d treat me to breakfast and then we’d go back to her gravesite. Well, he fell and broke his hip and that changed the relationship. We had to bring his bedroom downstairs, and he had to have more caregivers coming in. I sat with him from eight to one and then there was a caregiver that came in and bathed him. Eventually I was laid off because he needed a CNA and I didn’t have that skill. At this time I had just purchased a used car and had payments for the first time. To be laid off with no income was terrifying. So I started looking for an agency, going for the interviews and sending out resumes. I was very cautious around employers. I was trying to make the system work for me because I had spent some years with my own company. I assumed it would be out of the question to ask for $10.00 and hour, which is what I had been making because the family in Monmouth was paying me privately. When I started working for the agency I’m with now, I went from making $10.00 an hour to $6.50, and I’m still not making $10.00 an hour. I think this is an important dilemma – if we’re going to make changes in the future of caregivers, we need to be sensitive about salaries. There’s a transition happening from families taking care of elders to strangers taking care of elders. I experienced that when I started working for the agency. I was assigned cases. The worries for both myself and the consumers are: How are they going to treat me? Are my possessions going to be stolen? Is money going to be stolen? My elders and I build a relationship. The first day I’m there, I say, “Did you enjoy the visit? Did you feel comfortable with me? If you don’t, then we can find another caregiver because this is important. We’re going to be spending a lot of time together.” If it doesn’t feel comfortable, I’ll let the agency know. They are very responsive to me because it’s good business. I hate to say the word business, but it is a business. Maybe three or four years ago it was required by the state to have PCA training, and now to work for an agency you have to have your certificate. But basically the stuff that I do is common sense, though it seems like I often have to allow other’s decisions to override mine. That is totally against my whole philosophy of life. To be a part of the decision process, to be taken seriously, is the value of a caregiver. And yet, I can understand why I have to always “run it by

There’s a transition haening from famili taking care of elders to strangers taking care of elders.. . . The worri for both myself and the consumers are: How are they going to treat me?

4

Warmth and Wisdom: Roberta Rord’s StoryContinued from page 3

somebody.” If something goes wrong, there are plenty of people who will point the finger. My values are safety first. I’ve seen people fall. I’ve been right in the room and seen them fall behind me. I had one lady that walked with a walker, and one time she went to bend down and momentarily she just froze. She was a stroke survivor and it scared the living daylights out of me that she would come out of that. I had no medical background to know what was happening to this woman. And there’s another side of me that’s saying, “Do I really want to know? Because taking on more responsibility is not going to affect my pay because this is a business.”

Breaking A Frozen ThoughtIt’s amazing how you can break a frozen thought. Like, some people will say, “I don’t like poetry.” I’m thinking of one lady that I went to in Wiscasset. She lived in a trailer. Now, I go from extremes in terms of economics. That is one of the most challenging experiences, to go from someone who has a savings of $400,000 to someone who’s living in a trailer who has nothing. In fact, her daughter left her job as a cook in Rangeley to come down to Wiscasset and care for her father, who died of cancer. Her mother had nine strokes, was a diabetic. This daughter had left her income so she could live in a trailer and care for her mother. You know, there are so many kind, caring, gracious people that have a spiritual richness that a lot of wealthy people don’t have. I find that profound. On this day, the daughter was telling me that it took her six hours to feed her mother three meals. She would have to stroke her mother’s throat every time she gave her something to eat because the throat muscles were partly paralyzed. I was only there for a day with them. Her daughter and I literally had to roll her in a secretarial chair into her little tiny bathroom that had the washer and dryer in it, and the two of us lowered her down into the bathtub that was padded with air pillows. I was to take forty-five minutes and pour warm water over her body. Well, I was having a difficult time doing it because she was so thin and stiff. And the muse was telling me, “Rigor mortis is setting in, but I’m alive. I’m alive.” So I thought, I’ve got to go out to my car. I happened to pack Robert Frost. I

said, “I’m going to read you the poem, The Pasture, and if you don’t like that poem, I’m going to stop.” So after I read The Pasture I said, “You want me to read another one?” She said yes. So, sitting in the secretarial chair I poured water over her body as I read Robert Frost. Her eyes were closed; it was too much energy to keep her eyes open. And I would say, “Do you want to hear that again? That’s such a great poem.” And she would nod yes. I spent forty-five minutes reading Robert Frost to her. And then we very carefully lifted her up and wrapped her up and put her on the chair and rolled her back into her bedroom. I had to put lotion on her and I was not trained for that, not at all. It was very shocking. I was supposed to be there once a week as a respite person. The following weekend I had these – I don’t know – intuitions, feelings. I just couldn’t get her out of my mind. I relived that visit over and over again. And the next day I called the office to let them know that I had been sick with the flu and I didn’t want to contaminate this woman. And the staff person said, “Oh, Roberta, didn’t you know? She passed away this weekend.” Well, I thought to myself, “In the short time I spent with her, I was walking her into heaven.”

No Set FormulaYou know, there are 30,000 families in Maine who have an Alzheimer’s person. We are a retirement state. People talk about wanting to retire to Maine and I say, “Be sure to bring your own caregiver. We don’t have enough here.” I’m joking, but I’m serious. If we’re going to be promoting our state as a retirement state, we’re going to have to deal with dementia and Alzheimer’s. It takes a lot of energy, it’s hard to always be positive. So many of my elders are able to see right through phoniness. I don’t have to worry about that, because one of my top values is authenticity. Being yourself, being honest, being open, not hiding anything – these are so important. I make it an effort to have a rich, warm relationship with my elders. I guess I’m a Miss Fix-It, so I’m always trying to fix the discomfort with the elders. If they’re not satisfied I tend to say, “What can I do to fix it?” But then there are days when I go in and I say, “I’m sorry, I cannot fix this.” I can’t fix swollen legs from lady who doesn’t want to give up eating foods with a lot of sodium in it. I

5

cannot fix your chest pains if you’re not taking your nitroglycerine pills. I have to know my boundaries, know how far I can go before it starts taxing me. But you know what? I sleep well because I know I’ve done everything I could to make the situation as right as possible. I mean, my work is my life. Their lives are very sedentary, they’re in their little prisons emotionally, mentally and physically – I can relate. It reminds me of how I felt after Warren died, back in 1977. My morning elder has Alzheimer’s. There are times when she doesn’t even have the ability to think about lifting her leg to help me put her slacks on. There are times when I have to tell her how to get in and out of the tub, step by step by step. It takes a lot out of me. I’ll try to find something in the newspaper to tell her and it is so difficult because her range of interest is so small. Her granddaughter talked to me once about how growing up her grandmother was not allowed to go beyond the farm. I thought to myself, “Not only is she isolated now, but she’s always been isolated.” That piece of insight helped me. It’s important to be empathetic – but there are times when you can be so sympathetic that you’re no help at all. It’s through learning about them – each Alzheimer’s, each dementia person is different. There’s no set formula. Maybe there are people who go in with a set formula, but I don’t. It’s very sad that the PCA course provides training for the physical needs of the elders, but there’s nothing in the course that would give you a clue that reading The Pasture by Bobby Frost would be a comfort to a dying lady. And you know, that is just so important.

*Name has been changed.

If we’re going to be promoting

our state as a rirement state we’re going to have to deal with dementia and Alzheimer’s. It tak a lot of energy, it’s hard

to always be positive.

Our Stories

6

I Common Sense and Patience:Arlene’s Story

Learning, Knowing, AdvocatingI’ve worked with Kevin for eleven years, and he’s going to be 75 soon. I’m the caregiver who’s been with him the longest. When I first started, Kevin was a very, very active consumer advocate. He was on about five or six different boards of directors for different organizations. I have learned so much from that man as far as disabilities go. He’s just a mountain of information. He loves politics, and he’s done some very important work in the government. His insight has been absolutely great. I’ve learned things that I’d never even known were out there - like the politics that he keeps track of and the insight that he provides for the different disability programs. He’s a really interesting person to be around. Kevin administers his own program, and he’s created a manual for his caregivers. It’s all Kevin’s way, in black and white. It tells you how you’re going to do his cooking, what he can eat, what he can’t eat. It’s going to tell you how to make his tea, what his drinks are, what goes into these drinks, what his physical therapy exercises are and how you do them, in what order you do them. From the time you come in through the door, it tells you what you’re going to do and how you’re going to do it. And when you have a space of time and you haven’t got anything else to do, then you do this, this and this. In February Kevin had a heart attack that did a lot of damage. He is now unable to do 90% of what he used to do by himself. When I first started with him, the work was mostly things like getting his breakfast, it was helping him get dressed, it was helping him do his range-of-motion exercises. It was, if he had any meetings, take him to those meetings. The work’s a lot different now. He’s left with just upper body movement pretty much. He can feed himself, he can put in his own hearing aid, his glasses, and he can wash his own face and hands and more or less the front of him. But as far as anything else, no; it’s waist up, basically. He doesn’t

n consumer-directed services, personal assistants work directly for the consumers to whom they are providing support. There is no agency or nursing home to act as a “middle man.” It is the consumers who have the final say how their care/support is directed. There are benefits and added responsibilities to this consumer-centered way of providing support. Anyone who has worked as a personal assistant through an agency understands that there are a hundred small - yet important - decisions that a personal assistant has to make while working with a consumer. All too often caregivers’ hands are tied because their supervisor is not in the room, but rather in an office somewhere else. Having the freedom to be able to ask the consumer what their needs are, and fulfill those needs as they arise, can be very satisfying. Arlene and Kevin* have spent eleven years building a strong working friendship with one another. Arlene is an understanding and compassionate assistant who is a fierce advocate for her friend Kevin. Because they’ve become so familiar with each other, Arlene has taken over much of the supervision and responsibility of the five and sometimes six assistants who are providing Kevin with fourteen hours of care per day, helping him manage his Multiple Sclerosis and stay in his home. They have faced many challenges together, and both demonstrate the kind of strength of character that can make a consumer-directed support relationship successful.

The one thing I learned was give people just as much control as they can with their own liv.

7Our StoriesContinued on page 8

have the balance to do things like shoes and pants. Little things like wheelchair breakdowns are a catastrophe for anybody with a disability and we deal with these constantly. They really frustrate him, as do things like hearing aids. He can do them, but in the doing he might drop them. If it’s on the floor, there’s no way a person in a wheelchair is going to pick it up. He has a grabber and sometimes he can get it. A lot of times he can’t get it. A lot of times he can’t see where it is. So if it’s a hearing aid, he could run over it and destroy it unless somebody’s there to pick it up. Most of the time now he works at his desk, and he’s always got a radio or some music on. We do sweepstakes together sometimes. We love the thrill of sweeps. We both enjoy the same type of music. We both enjoy watching the birds. I did sweepstakes before I went to Kevin’s. I enjoyed the birds before I went to Kevin’s and music is something I’ve always loved. Those were three hobbies that I came along with and that we could communicate with when I started working with Kevin, and we share these things even after eleven years. He’s got his talking books. He’s even got the talking books that are magazines so that he can keep up with that. If he’s in the bathroom brushing his teeth, he can listen to his magazines. He does handwriting exercises because, at one point, he lost the ability to write, so now there’s a list of all of his daily things he wants to do and he writes it out. He practices penmanship so he can continue to sign checks. I do things like helping him file receipts and credit card bills. I let him do just as much as he possibly can. The one thing I learned was give people just as much control as they can with their own lives. When you start taking control by over-helping them, you’re not doing them a favor. They’re going to resent it. Kevin has three daughters and they are a godsend. If he had a bad day and I am pulling my hair, I call them up and get it off my chest. Because, you know, if I left it in, it was just going to bubble up inside and the next thing you know I’m going to be job hunting. I get these little e-mails that say things like, “Thanks for everything you’re doing.” They’ll say something like, “Well, you may not be a blood sister but you’re definitely a sister. You’ve been around long enough.” He has a very good relationship with all of his girls. They are so helpful. If you need something, you mention it, and it’s taken care of. We needed the Hoya. Kevin did not want to accept the fact that he was getting weaker and weaker. He’d fall down; it was hard to get him up. We could hurt ourselves trying to get him up, or his son-in-law would have to come over and help. A lot of times Kevin will just say, “Absolutely not. Not going to happen, that’s it.” Okay, we sit back; we take a couple deep breaths and maybe a day later say, “Kevin, hey, if you want us to do the job we’ve got to have the equipment.” I talked to his daughter and said, “Well, he’s being stubborn again. We need the Hoya, it’s getting that bad.” She talked to her father and said, “Hey, the girls say we need to have this.” He’s reasonable, but sometimes you have to just give him a day. These are big things he’s facing about his life. Maybe he’s having a bad day and he doesn’t want to deal with it, but he understands. He came around and said okay for the Hoya. His daughter called the doctor, got the prescription, called and ordered it – I think maybe it was a week, ten days, the Hoya arrived.

One of the benefits of consumer direction is that if consumers have a say in who they choose to work with, it is more likely that they will make a connection with someone who they can form a relationship with, and who

I did sweepstak before I went to Kevin’s. I enjoyed the birds before I went to Kevin’s and music is somhing I’ve always loved. Those were three hobbi that I came along with and that we could communicate with en I start-ed working with Kevin, and we share the things even after eleven years.

8

Common Sense and Patience: Arlene’s StoryContinued from page 7

will stay in the job for long time. There is a certain understanding and insight Arlene has into Kevin’s needs that could not form between people who only share a few hours a week for a short period of time. Arlene knows Kevin as a person and as a friend. His MS and the management of his care is one part of the much larger picture of who he is. Because she has had the time to know him as a whole person, she is better equipped to know his needs and advocate for them to others.

Because I’ve been there longer, a lot of the supervision has fallen to me. The three of us that have been there the longest sometimes have to shift some supervisory duties to the others. If I’m off on a Wednesday and the nurse is coming over on Wednesday, then somebody else has got to tell her what kind of medication we need. When we bring somebody new on board, automatically he will start fretting which will bring his energy level down. He’d like to keep me and the same old people on 24 hours a day, seven days a week. He’d like to lock us up and not let us out. In a lot of what we do now, we’re supervising ourselves. Like, if I’m cooking, he’s not telling me what to cook; I’m planning the meal. If washing needs to be done, he’s not telling me I need to do washing. If I come in and see three loads of washing in the basket, I’m going to say, “Oh, the girl didn’t do the washing last night.” So, he’s going to put it right on her list of things to do – didn’t do washing last night. That’s as far as the supervision on his part goes now. Some people just like to take the easy way out. They think, “Okay, I’ll get his supper; I’ll empty the wastebaskets and take out the trash. The floors don’t need sweeping.” We’ve had people like that and when they come in you either have to leave them a note, or when they walk through the door say, “Hey, last night you didn’t sweep the floors. You’re supposed to do that every night. Could you please remember to do that?” You try to be as nice as possible so as not to cause friction.

A Much Larger PictureOne problem we’re having is that Kevin responds to older people. People like to communicate with people their own age. And if you’re having trouble doing things, somebody that’s in their seventies is going to respond a lot

more sympathetically, and be a lot more patient with you than somebody that’s in their twenties. They’re a lot more understanding because understanding and compassion comes with age. People are not born with common sense and patience. I don’t think any of us are. The world would be a better place of everybody was born with common sense and patience. Understanding Kevin is one of our biggest problems. He has had trouble talking since I started to work for him; it’s part of the MS. Of course the more people try to get him to talk the more tired he gets, the weaker his voice gets, the more frustrated he gets. And when he gets frustrated, he’ll take a deep breath and he’ll yell because that’s how he can make them understand. A lot of them think he’s being mean. He’s not. He’s trying to do it the only way he can do it. I’ve tried to explain it to the other caregivers, but there are times when I just have to say, “Hey, don’t get upset. Yes, he’s frustrated when he yells. But you need to understand he’s frustrated because he can’t talk the way he wants to talk.” With younger people, they automatically think he’s mad at them. He’s not mad; he’s frustrated. Say Kevin’s in the other room and he wants something. He might say, “Arlene, I dropped my pencil.” I’m not going to hear what he said. Nobody’s going to hear what he said because he’s got the TV going, he’s got the radio going, or I’ve got the washing machine running or something. I hear “Arlene,” but I’m not going to hear what else he said. So, I drop what I’m doing, go into the room and say, “Kevin, I didn’t understand what you said. What was it?” I get right in his face directly, he repeats it, and I get it. I do what he wants done; I go back to doing what I was doing. It’s so simple to me, I don’t see where there has to be a problem. The new girls are the ones that pay hell because they’re the ones that aren’t used to the routine. They’re the ones that ask him questions and wear down his voice so they have a hard time understanding him. They’re the ones that are taxing his patience. Some of them do better than others. And some of them will come in and say, “Well, I’ll do this for you, you don’t need to do this yourself.” Or some will say, “He needs to be in a nursing home. He’s too much care to be here.” I’ve come right out and said, “There’s nothing wrong with his mind. His kids do not need to put him anywhere and you do not need to

9

talk down to him. You need to show a little bit of compassion.” There’s nothing wrong with him. Yes, he cannot communicate well. I hate it when they come in and treat him like a child; like he doesn’t know what he wants and they know better for him. That is not going to go over and because they can’t treat him like a child and have him obey like a child. He won’t do it; he has too much self respect for that. And because of it they don’t stick around very long. I can go in, in the morning, look at him in the bed, and just by the way he reacts within the first fifteen minutes of my being there I can tell whether he’s extra tired, extra weak, or energized as hell. If he’s real weak I’ll say, “Kevin, I don’t think today will be a real good day to try to go to church.” Or maybe after breakfast I’ll be watching him and I’ll notice that he is extremely weak. “What do you say we skip exercises and you go back to bed and take a nap – you didn’t sleep well last night.” I’ll make suggestions. Other times he’ll come right out and say, “We’re not doing anything today. Just put me back in bed. I’m tired. Or maybe I’ll lay down in the recliner and rest.” And he can lie down for a half hour and he’ll be fine. It’s just that he needs that little extra boost and sometimes I have to remind him of that. An Uncertain Future

The future is uncertain for Arlene and Kevin at this point. Medicaid, which is the source of the funding that pays caregivers who work in consumer directed programs, is being cut. At the state level, the responsibility for the funding and managing the programs are being shifted from one department to another as Maine struggles to manage healthcare costs. Changes happening on the legislative level are affecting people like Kevin and Arlene in a very real way.

The wages I get through the Attendant Services Program are $7.71 an hour. It’s not a living wage. I’ve been with Kevin eleven years and a new person coming through the door gets the same rate of pay as I do. We also need to have benefits because we’re not going to keep people in this program if we do not have benefits. I’ve been with Kevin eleven years. For health insurance I would have to leave. I know you can go to places like McDonald’s and get more an hour than I’m getting. My nephew was job hunting and as an assistant manager at McDonald’s he could get health insurance. We are in a healthcare profession. If we are working in a health care profession, why in the devil aren’t we getting healthcare? It does not make sense. We’re at the bottom of the ladder. We need benefits. Last time I looked into health insurance for my husband and myself it was $700 and something a month. We are federally and state funded through this Attendant Services program yet we do not have health insurance. To me that makes no sense whatsoever. Insurance and paychecks are problems that we’ve been dealing with forever, but the biggest thing we’re dealing with right now are all these cuts in funding

Continued on page 31

We are in ahealthcareprofion. If we are workingin a healthcareprofion, y in the devilaren’t we gettinghealthcare?

Our Stories

10

Finding a Place in Homecare One thing I like about home-based care is that you can take time with the clients. In nursing homes, you don’t have that luxury. The nursing home that I used to work in had six or seven residents per CNA. When you’re trying to get people bathed and dressed and the teeth in the mouth, and the whole nine yards, and get them to the breakfast table, that gives you all of about ten minutes per person. That doesn’t allow you to treat them

as a person. I think it’s somewhat dehumanizing. I get a sense of the client’s wellbeing at home, where they are most comfortable. They’ll heal better, they’ll feel better, and they’ll live better in their familiar surroundings. It also gives the worker a sense of wellbeing knowing that we have gone in and done something good. Not that we’re angels or miracle workers, but one of my philosophies is to leave them with a smile. I’ll think all day long of some ridiculous thing to say, of some crazy joke to tell them. If you leave them with a smile, they’ll remember that and look forward to you coming back. Over the years, I have had to try harder to do better than my female coworkers. It sounds sexist, but nursing is traditionally women’s work. When I tell people what I do, or when I come into somebody’s house,

IKE JONES is a Personal Support Specialist (PSS) who has been working in the Bangor area for more than eleven years. In his time as a PSS, he has taken advantage of every training opportunity offered to him and has also been qualified as a Certified Nurse’s Assistant, a Certified Hospice Aide, a Certified Residential Medication Assistant, and a Mental Health Rehab Tech among others. As he says, he has a “string of an alphabet” after his name that’s proof of his willingness to accept a new challenge and to learn more about his work. He’s been doing home-based care in Maine for the past five years. He believes in empathy and compassion, not sympathy. As he says, he doesn’t “sugar-coat” when he goes into a consumer’s home, and he doesn’t need to. His easygoing nature and genuine concern for the consumers he works with make him a great Personal Support Specialist.

Compassion and Insight: Mike Jon’ StoryM

If you leave them with a smile, they’ll remember that and look

forward to you coming back.

11

My hilosophy in working in Hospice was that I was not allowing people to die with dignity, but rather to live with dignity until they died.

one of the first things they think is, “He’s not a ‘man,’ he’s doing women’s work.” Mostly we think of men as doctors, therapists – you might find them in the hospitals, as orderlies or things like that. To have men doing home healthcare, real hands-on stuff like housework, they think that there’s got to be something a little bit “wrong.” People will ask me, “Well, do you know how to give a bath?” I’ve had the same training as everyone else. Our individual ways of doing things might be a little bit different, but basically we get the same training. “Well, doesn’t a woman’s body bother you?” No more so then a man’s does. A body is a body. All women are built the same, and all men are built the same. There was this one couple I worked with that were in their early nineties when I started with them. They had been married for 74 years at the time of the husband’s death. When I first started there, they were very leery about having a man helping them. She watched me like a hawk. When I take on a client and go into their home, in a way that becomes my home too. I ask them how they want things done, where they want things put and work with their preferences. But usually, after the first couple visits, they don’t have to tell me what to do or ask me to do something. It all becomes part of the routine. It helps some that the cooking I do is of the old fashion style – good old home cooking. I don’t just take something out of the freezer, pop it into the microwave, toss it onto the table and call it lunch. I found out that this woman loved haddock so one day I cooked it the way I like it; rolled in cornmeal and fried. She loved it, wouldn’t have it any other way after that. I hadn’t been working there very long when she started making these broad hints, “Gee, I wish somebody would make me some chocolate chip cookies. I haven’t had a good homemade cookie in a long time.” I was thinking “I’m only here for two hours and all this other stuff needs to be done.” Yet, I really wanted to do it for her. The answer? I went to the store; got some Betty Crocker pouch mixes, added an egg, a stick of butter, cooked them off and she had homemade chocolate chip cookies. She was so happy, so appreciative. I made those cookies at least once a week for over two years. I could sit and talk with this couple for hours about the history that they had lived through beyond my time here on earth. I loved it. Put the two of them together and you had almost two hundred years of history. I think part of the advantage of the older, more seasoned workers is that we have some knowledge behind us that we can draw on to relate to our clients. It distresses me that some of the younger workers have only learned the quick way to do things. You put them in a home and say, “Okay, you have to do all this.” They think, “How am I going to do it all?” Sometimes it can be overwhelming for them. When you get an old workhorse like me come plodding along, we don’t get excited about this stuff. For us, it’s just part of life. Most days, I’m up at five or five-thirty. I see my first client around seven or seven-thirty in the morning, six days a week. Five days a week, I’m working until 10 o’clock or later at night. So essentially I’m putting in sixteen hour days, plus meetings, plus doing personal errands for my clients. I work all those long days, and I do so without any benefits; no insurance of any kind. I can’t even afford to buy my own medications. It has been over a year since I last saw my doctor. What am I supposed to do? You work until you drop, until you yourself

Continued on page 12 Our Stories

12

become a client. Then you have to go into the state Medicare programs, or MaineCare, you have no choice. I say let’s get some of these policy makers down here to get their hands dirty. Let them walk in my shoes for a week, at my pay. I’d like to see what they think of it then.

Daily InsightsI don’t form emotional ties with the clients because it’s not a very good policy to do so. I can’t help but enjoy working with them while I’m actually working with them, but I have to keep a certain degree of emotional detachment so I don’t unravel when something like hospitalization or death comes along. If you think about it, death is a part of life. It’s the natural ending of life. It’s unfortunate that it comes when it does in some cases, and in the manner in which it is delivered, but death is a part of life. I keep that thought in mind and couple it with the fact that the majority of our clients are in the later part of their life when we go into the home to begin with. Once you reach a certain age, really, there shouldn’t be any “unexpected death.” Once you start life, death must be expected. It’s the timing and means that throw us off. I did Hospice work for a while. Hospice is working with terminally ill people, usually within the last six months of life, because that’s when insurances and Medicare will pay for the services. Sometimes the doctors get fooled and they go beyond six months, but they’re usually on the mark. My philosophy in working in Hospice was that I was not allowing people to die with dignity, but rather to live with dignity until they died. I had a Hospice client once that had a very profound effect on me. At sixty years old, she was diagnosed terminal with lung cancer. She was a college professor and had taught overseas at a number of universities; a very interesting person. I got called and I was putting in about twenty hours a week with her. She had 24/7 coverage by CNAs and RNs. I was involved with her care, hand in hand, with the RN’s. I helped them perform duties that they were required to do that CNAs usually don’t get involved with. The woman had gone through a procedure of deadening the nerves in her mid-back that rendered her legs useless. The procedure required that she lie on her back, legs elevated, for a number of hours. Because of the procedure and her compromised

Compassion and Insight: Mike Jon’ StoryContinued from page 11

system, within days she developed a pressure sore on the base of her spine. That procedure was performed just before Christmas and not long after that she went into a nursing home during a big ice storm for five days. Not to degrade in any way the nursing home, but simply because of logistics and staff shortages, she didn’t get the individualized attention she needed. The pressure sore advanced and by the time this lady passed away it was huge. She had no healing powers. I had to help the RN treat it simply because she couldn’t turn the lady onto her side or stomach to treat her back, and the sore was just bigger then what she could handle alone. She needed an extra set of hands. I got into a lot of situations with her and other Hospice clients that I normally wouldn’t as a CNA. This client was a very private person. I don’t know if it was something she sensed about me, but she opened up to me a lot more then she did with the others. Something she had been ready to take to the grave with her, that she confided in me, really hit home. Because of the lifestyle she had determined to be right for her, she had been rejected by her adoptive father. This really impacted me because she and I shared that aspect of life. She had only one other living relative that she knew about, and was there dying alone. I thought, “This could be me in another twenty years.” That hit really close to home. The last time I saw her, I was being relieved by the next worker. I’d already been there for my shift. She was beyond speech at this time, but she was still alert. I walked up beside her bed, the other CNA was holding her hand, and she turned a little bit in my direction and looked at me. She didn’t move her lips, but she had a look in her eyes that said she knew this was the end. She looked right at me and with her eyes said “Thank you.” I picked her hand up, kissed it, and said, “Little Sister, I’ll see you the next time the circus is in town.” I left, stopped at the store for a few things, and went home. Twenty minutes later, I got a call from the other CNA telling me that she had died. I stopped doing Hospice a little while after that. That was a once in a lifetime situation. Although I may seem cold-hearted at times, there is life under there. That situation rattled me to my foundations and I don’t know how many of those I would be willing to take. When you’re sitting there for hours

13Our Stories

I work all those long days, and I do so without any benefits; no insurance

of any kind. I can’t even afford to buy my own medications. It has been over a year since I last saw my door.

Continued on page 32

and you’re discussing politics, you’re discussing education, music, life in general, world events, you’re reading the newspaper to her, you’re fixing meals, feeding her, trying to get her to drink – it brings you into such a bond with that person that you bend and you’re almost a part of each other. And I knew she was going to die, but I didn’t expect that feeling to happen. But she looked at me with her eyes and said thank you and that just rattled me. It was worth it, though. It’s things like that that make a lifetime of this work worth it.

Being ChallengedRight now, I’ve got eight clients. Most of them are more “housekeeping” type personal support. I do some housework, laundry, grocery shopping, that sort of thing. For most of them, there’s not really any hands-on direct care. However, there’s this one guy, Eric, who’s wheelchair bound and almost total care. I spend an average of twenty-one hours a week with him. He’s been fighting for almost five years to live on his own. He was put into a nursing home, and he lived there for a while. Then he wanted to exert his right to live independently, he wanted a life and finally got his apartment. I love his upbeat attitude towards things. Here he is in need of almost total care – by all means he should have somebody living there with him, but he lives alone. He goes out to a day program which is a challenge in itself. Medicaid at the state level just cut funding for that sort of program and he was reduced from six hours a day to five. That doesn’t seem much of a difference until you figure he has to coordinate with somebody to be there to let him into his apartment. The program he goes to will not allow their drivers to let him in or out of the building. It’s been a struggle, but he now has a fantastic caseworker from a local agency who will go to bat for him, swinging both arms. Things are getting done. When my agency signed on to take his case, we all juggled schedules around to help accommodate him – within reason, of course. I was in a locked-in time

14

The Best Part of the JobRight now I have two weekday jobs and then my weekend job. During weekday afternoons I work with kids as a Behavior Specialist, or a “BS1” they call us. Mostly I’m with kids who have serious behavior problems. I go and take them out of their houses and try to correct the behaviors. I’m teaching them simple things like “please” and “thank you,” and how to get along with others and their parents. I also work half the year as a teacher, doing theater. Me and somebody else travel around the state teaching Shakespearean drama to high school and middle school English classes. Sometimes we’re

there a whole week, but mainly we go in for three 80-minute sessions and we teach them about a play they’re going to look at in class. Then they have costumes they put on and act out a little scene for their class. It’s fun. On the weekends I work a 56-hour shift with Kristen. She lives in her own apartment but she has someone there with her all the time. Supported Living Facilitator is the official title the agency we work for gave us. I come in Friday nights at 11 o’clock, and I leave Monday morning at 7 a.m. Kristen has a unique dynamic of people. She has one

t age twenty-five, Jennifer Grodewald holds three jobs, often working seven days a week and up to ten hours a day. Jennifer makes it clear that working a packed schedule is a matter of choice and one she feels good about. She says, “Even in high school I was always the kid that said, ‘Oh, fifteen clubs? Not a problem.’ One year I don’t think I came home on the bus once, I was always there for something.” She has a bright, warm personality and a great sense of humor that shines through especially when she talks about Kristen, the twenty-eight-year-old woman she works with on weekends. Jennifer has facilitated Kristen’s independence in many ways, but the most important of which is that she treats her as a person and a friend, not as a client with a disability. It’s seems natural that Jennifer will assume that Kristen fully understands what’s happening and is fully capable, until and unless she communicates otherwise.

What We Teach, What We Learn: Jennifer Grodewald’s Story

A

If Kristen needs me in the middle of the night, I g up in the middle

of the night. That’s just how it is.

15

.lady who’s older than her, about as old as her mother. Then she has me part of the week and I’m younger; I’m 25 and she’s 28 so she looks at me sometimes when I say, “Oh, my girl here,” like, “Nice try. I’m older than you, young lady.” She has a whole array of people that she works with and it’s great, because after 56 hours she looks up at me and says, “Alright, I’m done with you. Next lady, please.” I assist Kristen with pretty much every aspect of her life, though I always I let her do what she can. For example, she can’t cook for herself, but she can be there with me if I need her to stir something. I have to hold it with her and help her do it. I can’t just say, “Okay. We’re making brownies. Here, Kristen, here’s the bowl - stir it up for me and I’ll put it in the oven.” There are ways that Kristen communicates, even though she doesn’t say words. I know exactly what she wants a lot of the time because of her tone of voice. It’s not so much her sounds, because she makes a lot of the same sounds sometimes when she’s upset or not upset. It’s her tone. I can tell if it’s the tone that means “I want something to eat now” or “This is getting boring, let’s go out for a walk.” Often times she’ll just walk over to the door and look at me. You know, “Take the hint Jennifer. I’m pointing to the door. Let’s go for a walk.” Kris isn’t difficult to work with, though it can be tiring sometimes because I’m responsible for myself and someone else the whole time. People laugh and think, “Oh yeah, you have must have tough weekends,” because Kristen and I will do things like going to the beach. But even then there’s a lot more to it than just hanging out on the sand. When we have lunch it’s not like I just put things on the picnic table and say, “Whenever you’re hungry Kris, get what you want.” If a wave comes in I have to get up and move everything for both of us, not just my stuff. I’m constantly watching and prompting her. A lot of times in the summer on nice days I’ll take her to a picnic area down the road that she loves. It’s near the river, and it’s fenced in and I don’t have to worry about her tripping on the rocks and falling in the river. Some places go right down to the water so I have to be right next to her the entire time. Sure, I might think it’s annoying having to follow her around, but then I think about her. It’s got to be really annoying for her having somebody right there on her arm all the time. Sometimes she wants her space. I can’t ever really take a break. It’s not like I can go outside for a walk because I’m going crazy. The most I can do is to go in the other room for a little bit. Even then Kristen wants to make sure I’m okay. She’ll come in a few times to make sure I didn’t sneak out the window. If you’re doing retail in a store you can take half hour breaks and go somewhere else where there are no customers. With Kris, I don’t get to be completely off even when I’m asleep. If Kristen needs me in the middle of the night, I get up in the middle of the night. That’s just how it is. But we’re not considered on-call. If you were a doctor and you were on-call, you’d actually get paid for the hours that you’re asleep because they could wake you up at any time. But again, we’re not officially on-call, so we don’t get paid for all of it. If you read the law it says when you do this work you need five hours of sleep per night of your shift. If you get five hours of sleep then you don’t have to be paid for that sleep time because you’re not doing anything. Unfortunately the law doesn’t say “consecutive hours,” it just says “five hours of sleep per night.”

People say to me, “Oh, it’s really nice that you work people with disabiliti bause it’s nice that they have somebody o treats them so well. You should feel proud of yourself.” They’re miing the point.

Continued on page 16 Our Stories

16

So that means you could be asleep for an hour, up for an hour, asleep for an hour. My argument was, “Not for anything, but if you’re up and down all night – and we often are with Kris – do you really feel rested at the end of the night?” It’s tough. I’ve been asked a couple of times whether I’m going to quit one of my jobs, or limit how much I work. But I like my jobs. I hardly ever come home and say, “I can’t believe I had to work all day.” When you enjoy your job, it doesn’t feel as much like work. People keep trying to tell me to pick one or two, but I’ve gotten very attached to the people I work with. Kristen is the reason I’m still there on weekends. So many times I’ve said to myself, “I could leave here now and get a better paying job or work for a better agency, but then there wouldn’t be Kristen.” Kristen is the best part of my job and what it comes down to is that if I wouldn’t be working with her, I don’t want to do it. People say to me, “Oh, it’s really nice that you work people with disabilities because it’s nice that they have somebody who treats them so well. You should feel proud of yourself.” They’re missing the point. I don’t feel proud of myself for working with Kristen. I learn so much from her, I feel lucky that I know her. My aunt’s a nurse, my uncle was a cop, my brother’s a paramedic; I guess you could say we’re a service-oriented family. But we don’t go around talking about how we’re so proud of ourselves for what we do, we just do it. My generation gets a lot of flack because people think we’re lazy, or we don’t understand what’s going on. I want to say to them, “You feel bad when we say, ‘Oh, you’re the older generation and you don’t understand us kids. Things were different when you were younger.’” You don’t like being labeled, so why do you label us? I show up, I never miss a shift; you can count the number of times I’ve called out on one hand. Yet you constantly say “These young people. . . ” In this line of work you make lasting relationships, and some people aren’t ready for those relationships; it has nothing to do with age. The people you help are very dependent upon you. You can’t just decide that it’s a beautiful day and you don’t want to go in. I can’t call and tell Kristen I’m not coming because I feel like going to the beach today. She’d say, “Well, you can’t do that because I need somebody to come make me breakfast. If you don’t come, I don’t get to eat.”

PatienceWith Kristen I learn a lot about patience. I’ve been told in the past that I’m a patient person but I never felt it. People would say, “Oh, you must be patient to have thirty kids in a classroom at the same time. You don’t get upset, you don’t yell at them.” I know how to hold my tongue but that doesn’t mean I’m patient. I don’t feel patient even though I am smiling and look calm. I think with Kristen I truly understand what patience is. It might be easy for you or me to say, “Can you pass the juice?” Because she can’t actually get that out, she has to have a lot of patience to get her point across and have people address her needs. Sometimes I’ll say, “Oh Kristen, I’m not feeling all that patient with you today.” She just kind of smiles like, “I don’t care, because I can still be patient with you. I’ll let you mess up as many times as you want; just remember, in the end you’re going to have to get it right.” It’s hard to find someone nowadays who is accepting of everyone, but I don’t think there is anyone to whom Kristen would say, “No, you can’t come into my house because I don’t like you.” I think a lot of times we judge people by the way they look and the way they act. With Kristen that’s all gone. She doesn’t care. People are intimidated by Kris. Who won’t be intimidated by Kris? She is kind, beautiful, loving, caring and amazing; but most of all, she is confident about herself. I don’t think that you could truly understand this unless you have met Kris. People see how much Kris needs to have done for her and can’t imagine that how she could be so confident. I think I am somewhat shyer that Kris and I admire how she can go up to a complete stranger and engage them in a conversation. And these strangers, even if they don’t realize it right away, have had a better day because of her. Sometimes people are not really sure what to make of her. As long as she stands there and smiles they think she’s just great. But then when she communicates I think they’re a little intimidated by the fact that if she’s talking to them they don’t know what to do. In line at the grocery store I’ll be talking to the cashier and all of a sudden Kristen’s arm is around my neck and she’s pulling me in for a hug. “People don’t see what she is trying to do and I have to explain, “She is just giving hugs.”

Continued from page 15

What We Teach, What We Learn: Jennifer Grodewald’s Story

17Our Stories

Continued on page 33

Some people standing in line make me feel like they don’t want to say anything, and they don’t want to be rude but they feel like you’re inconveniencing them for being in front of them in the line. If we’re buying cereal for the house, I’ll have Kristen lift it up onto the belt. They think, “Why don’t you do it for her? Get it over with so we can go.” Well, it’s not my cereal and not my responsibility. It’s Kristen’s, and she is capable of doing it so they can wait an extra thirty seconds. I usually just ignore it, it’s not like I can always turn into a televangelist and start spouting off, but I will answer people if they ask questions. Kristen’s not really intimidating to little kids because she smiles a lot and she’s small. A lot of times kids will just come up to Kris and ask questions. “So, why can’t she talk? What does it mean when she makes noise?” Sometimes kids will be talking to us and the parents say, “Get back over here. Don’t bother them.” They’re not bothering us. I think the adults get to a point where growing up they were taught not to bother people who are different, or that it’s not polite to stare. Kids aren’t being impolite, they simply have questions and if they don’t get their questions answered they won’t understand. Amanda, the eight year old I am BS1 for during the week, was with me one day when we ran into Kristen at the museum. She was curious about Kristen – curious in a good way. She started asking questions like, “Well, if she can’t talk to you, how do you know if she doesn’t like something? Can she do this? Can she feed herself?” Since then we’ve all gotten together for lunch once or twice. A lot of people hear the word non-verbal and think that because Kristen can’t talk, she can’t communicate. Well, Amanda has no idea what non-verbal means. So I said, “What did you think of Kris?” She said, “Well, she was very talkative today. She had a lot to say. And you know, Grace kept trying to give her a pickle, and she didn’t want it. She was telling her she didn’t want it – She probably had a cut in her mouth or something and it would sting.” Because Amanda doesn’t know the stereotype of non-verbal, she automatically sees all the ways that Kris communicates, and to her they’re normal and understandable.

I’ve been asked a couple of tim her I’m going to quit one of my

jobs, or limit how much I work. But I like my jobs. I hardly ever come home and say, “I can’t believe I had to work all day.” When you enjoy your job,

it don’t feel as much like work.

18

An Open and Loving Heart:

Susan Tucker’s Story S USAN TUCKER is a CNA who

works in and around Bidde- ford. Susan sees how essential quality care is from a number of different perspectives. As a PCA, she worked in homecare, and after getting her CNA license, agreed to split her time between nursing home and homecare work. She is very committed to her job and her consumers and so has learned to adapt to both, though they offer their own unique challenges. She has also managed support workers in her own home who come in to work with her ten-year-old son, Keatz. Keatz has benefited greatly from the Habilitation Specialists that have worked with him over the years and Susan is clearly a proud, loving mother. She sees the problems and virtues in the direct care and support workforce and continues her investment in it with quiet dignity and a real commitment to make things better for those working around her.

A Love for LearningI started doing this work about three years ago. I had taken care of my grandmother and my mother-in-law, but I wasn’t getting paid for it. I was just helping them out as they needed it. I would take them to go to the grocery store or do the dishes or take them to the doctor’s. Then three years ago I answered an ad in the paper and got an interview with the director of the agency I work for now. It was something I always wanted to do, to go into nursing, but I took a detour in my life and actually worked for a health insurance company for seven years. Then I stayed home and had my son, Keatz, for seven

years. Then I decided to go back to work and answered that ad. I had been working for the agency as a PCA for two years when I took the CNA class. I asked the secretary when the next class was going to be. I had to hurry pretty quickly because the classes were starting in September and I asked her about it in August. The training is 150 hours. It used to be 75 in Maine, but they doubled it. They have six modules in the book; it’s a really big, thick nursing book. Basically the class was 4 months long, three times a week. It was tough because I had to juggle work and family and school at the same time. I wanted to do it, even though I knew it would be hectic. I think I went into it kind of blindfolded, but they were very good at work. They gave me enough hours that I could keep my benefits but were pretty

I love going in there and seeing their smiling fac. I just got a hug this

morning from one of my clients; she was just glad that I was there.

19Continued on page 20

flexible while I was taking the class. There were mostly a lot of young people in the class. There was a mother-daughter team there. Everyone was enthusiastic about learning; there were always questions raised. The instructor showed us the equipment that we’d be using. We had a class on how to make a bed, and we’d practice giving bed baths on each other so we had to wear shorts and tee shirts that day. That was fun. There was only one guy in the class, it was almost all women. And he would say stuff just to be funny and the instructor would just look at him like she wanted to throw something at him. It was a fun class. The best part of the class was that it was about teamwork. We had study groups. We actually had each others’ phone numbers in case we had to get together before class. The book for it was interesting. There was a lot to learn because of the medical terms, but the teacher said, “Don’t worry about a lot of that stuff. It is more important to know how to be good with people.” There were some people in the class who hadn’t done the job before and they were really nervous. Maybe because they had never seen the work, and were scared; you know, having to know how to deal with a catheter or with someone dying. There was one particular class where someone came in and did a death and dying seminar. She talked about the stages of death and dying, and she talked about respecting the families and how a CNA can deal with a client’s death. It turned out to be really useful because I had done my clinicals at the same nursing home I ended up working at later. I hadn’t been there for seven or eight months and when I went back to start working I realized a lot of people were gone. Usually when someone does die at the nursing home, the staff kind of keeps to themselves and is very professional while they are with the family. Then they will go into another room and start crying. It can be hard. Especially if they’ve cared for the person for so long. I think the best part of being a CNA is the people. Some residents can be a little crabby, but it’s because of the kind of day they had. Sometimes they need a hug, it makes their day. I love going in there and seeing their smiling faces. I just got a hug this morning from one of my clients; she was just glad that I was there. A lot of them feel like they’re lonely. At least they have somebody to talk to when I come, so they’re glad that I’m there. If you’re going to take the time to do this job, you’ve got to take some responsibility for their feelings. I love the conversations I can have with them about their past. Sometimes they talk to me about where they’ve been. One of them will talk about World War II. He was the frontline man, and there were guns everywhere, but he wasn’t armed. He was just picking up the guys that were wounded, sort of like a medic. He never thought he would come back because he was on the frontline with shooting everywhere. He was surprised he never got shot. He tells me that story while I’m there, and I always like to hear it. I like to learn about people.

The People Make it WorthwhileAfter I got my CNA license, I was just working in home care, but then the agency I work for contacted me and a couple of others CNAs that did home care and said, “Would you like to do some hours in the nursing home?” I had done my clinical there so I was comfortable doing that type of work. I liked the idea of getting the experience of not only home visits but of the nursing home, too.

In the nursing home I’m go-go-go. I have to answer the bells quickly. You can’t spend a ole lot of time. When someone rings you’ve just go to do at they need and that’s it.

Our Stories

20

Continued from page 19

An Open and Loving Heart: Susan Tucker’s Story

In the nursing home I’m go-go-go. I have to answer the bells quickly. You can’t spend a whole lot of time. When someone rings you’ve just go to do what they need and that’s it. For the girls in the morning it’s really tough to get all the residents out of bed and ready for the day. And then when somebody calls out sick, they have to just go as fast as they can with each person. If you give them the face cloth and put soap on it, a lot of the residents can wash their own face and body. Some people can do that, some can’t. You have to do it for them. I think the residents feel like they’re being rushed because they don’t want to do certain things in a certain time. When they were in their own home they had a set routine. Now they are in the nursing home and they probably feel like they’re being pushed around to get ready for breakfast. I know the residents get up pretty early in the morning. They have to be up by 5 o’clock, some of them, or quarter of 6 at the latest because the trays are out by 7. It’s a real rush for the nurses’ aids because there are one or two out on the floor to do 14 beds sometimes. Sometime they don’t even have two nurse’s aids; they only have one to do 14 beds. That’s not fair to the person working at all. There are mistakes when that happens; there have been times where people have fallen. Either the nurses’ aids have to go too fast or the resident is very nervous and is antsy. That happens, and sometimes they’ll even make themselves fall because they’re confused or trying to do things on their own when they shouldn’t. It can be pretty crazy. It’s bad for everyone. I come into the nursing home later in the day to help them out because I usually have already worked a shift doing home care in the morning. I am just a floater, but I’m busy all the time; helping them toilet people before dinner and helping pass the trays out when they come in, giving out med drinks and stuff. Then after dinner I usually go take a break for a bit, like fifteen minutes and then come back and help toilet and put them to bed. Doing in-home work is more relaxed. I’m not rushed when I’m doing my work. In the home I’m free to move around more. In the nursing home I just go from one room to the next. You don’t get a whole lot of time with people; it’s five minutes here, two minutes there. You should spend more time with people, but you just can’t. Right now I have a total of six in-home people. It

switches – sometimes I have five and sometimes I have six. The ones that I have been going to are easy to deal with. There are some limitations they have, they can’t do everything for themselves and I might have to do some things for them, but it’s not very stressful. They all have something good to say when I come over. Right now I have one client in Saco that starts at seven in the morning. A couple days a week I go there and give her a shower, and get her dressed and get her ready because she goes to adult daycare. I’m scheduled on Thursdays with her in the afternoon for a couple of hours, so I go over there and feed and shower her. A diversional activity that she likes to do is to watch movies on TV, so we’ll watch a movie and I’ll do her laundry. She’s a really nice lady. She gives me hugs and stuff and she says thank you a lot. I like the nursing home, but people are easier to get along with when I do home care. I can go at their pace to do things. I think at home they feel happier because they’re not in a facility. As long as they can stay in their home for as long as they can they’re better off. I like to be in people’s homes. They have more there that makes them happy and comfortable. They can still keep their pets, too, and some people have had the same dog for years and years. The pet actually senses if you should be there or not. Most of the time if you are not compatible, they’ll either make it or break it for you. If the pet doesn’t want you there, he’s going to tell you to go. The client I had this morning has two dogs and a cat. If I go up to the client’s desk, the dog will be lying under there and will start growling. He’s very protective, thinking I’m going to hurt her. If I tell him, “It’s okay, it’s just me” he calms down. But when I first walk in he’ll bark and then the other one comes running and the cat comes around too. It gets hectic. This morning I had to give both dogs some cookies, and they were okay. People in the nursing home, it’s their home but I think they wish they were back in their regular house. They miss what they used to have and being able to use their own things and have their own schedule. They have very little other than their clothing and personal belongings with them in the nursing home. That must be difficult.

21Our Stories

What’s Most ImportantI have direct support workers that come and help my son Keatz. I had Keatz in 1994 and shortly after his birth my mother and I noticed that there was something wrong. He wasn’t responding very well. I had had a normal pregnancy right up until the end, but I had to have a c-section. When Keatz was born, the nurses had drawn blood and taken all the normal tests. That night someone called upstairs to the nurses’ station and said, “Put Mrs. Tucker and the baby on antibiotics. They have Group B Strep Meningitis.” That’s a fatal illness, especially in children. If they don’t die, they end up going into a coma or something like that and they have to learn everything all over again; how to dress, how to wash themselves, how to do anything. Not only children get it; adults can get it, too. They caught it in time but he ended up with developmental disabilities because of the damage, because he had seizures to go along with it, and his fever would shoot up past 105. He was fighting the illness, and the doctor told me that if he wasn’t as big and strong as he was when he was born we would have lost him. Keatz had to stay in the hospital for about a month. I got to bring him home the day after Valentine’s Day. I still had my work cut out for me because I had to give him medication in his formula. He was on that medication for at least three or four months. When he was six months old I had to get a therapist from the Department of Human Services. He needed therapy to help get his total motor functions working. He was late with a lot of things, like grabbing stuff and holding his head up. We had to help him, to make his muscles stronger and to teach him fine motor skills. The people from DHS were great, they were very professional. They were just absolutely fantastic for Keatz, and he liked them a lot. After he was about a year old a local agency started a program for younger children with special needs and other problems and he got to go to that until he could start nursery school. After that, he went into public school and has someone come after school and in the summer to work with him. They are mostly young people, young girls. A lot of them were college age or going to be going to college. Kara, who is taking care of Keatz right now, is an HS – Habilitation Specialist. We’ve gone through five or six people, and we finally settled with one agency. He went to overnight camp with them in the summer, and he has Kara that comes into the house and works with him. She comes in about three or four hours a week and takes him out into the community and does what he wants to do. She’s

I like to be inpeople’s hom . . . they can still keep their ps . . . The

p actually sens if you should be there or not. Most of the time if you are not compatible, they’ll eithermake it or break it for you.

Continued on page 34

22

KSomeone to Care for Caregivers:

Karen Bra’s Story

Better Relationships, Better JobsI’m an Alzheimer’s Specialist and I work with the Caregiver Companion program at Elder Independence of Maine. EIM connects people in Maine with home care services, coordinates with families to have PCAs or CNAs come into the home to care for a loved one. EIM clients are assigned individual Care Managers and if they have any problems at all the Care Manager will take a look at what’s going on and try to arrange to have their needs met. When the homecare services are being arranged for a consumer with Alzheimer’s or dementia, they call me. I go in and

work with the primary family caregiver in the home. Caregivers tend to be spouses; many times the wife. But I have husbands and daughters and sons and grandchildren. I make contact with them. I work with their Care Manager so it’s kind of a collaboration between us. We’re updating each other about what’s going on in this family all of the time. I give the caregiver a call and ask how they are doing. I say, “How are you doing?” Family caregivers are used to everyone asking, “How’s your husband doing? How are services going for him?” No one asks the caregiver if she’s doing alright. There’s so much going on that the caregiver is forgotten about. Many times just hearing that question is an opening for me to start a relationship. I have caregivers that I take out for coffee or lunch and find that getting them out for even short periods can be a huge benefit for them. I support family caregivers by

aren Bragg works as a Caregiver Companion for Elder Independence of Maine (EIM). For the Caregiver Companion Project three EIM employees have been trained as Alzheimer’s specialists, working in the homes of consumers who receive services. The Caregiver Companion’s role is to work one-on-one with family members who provide unpaid care for their loved ones. Family members of consumers who have Alzheimer’s and dementia often don’t receive recognition for the support they provide. Karen and the other Caregiver Companions work specifically to help meet the needs of these family members. Karen is unique, as she is the only EIM employee who works as a Caregiver Companion full-time. Karen is a compassionate, thoughtful person who is sensitive to the needs of those she meets with. Her own experience as a family caregiver is what led her down the path to this “dream job,” and her genuine compassion and insight into the situation for family caregivers is what makes her excellent at it.

“What is 100%?” I think it’s just giving your time to somebody, and letting them know they matter . . .

23Continued on page 24

providing them education through written materials about Alzheimer’s, books, fact sheets, and referrals. If they need to know where to go to for a support group, if they need to know who can help them with an application for services, I hook them up with phone numbers for help. I know about most of what’s out there to help families living with dementia and Alzheimer’s. I can tell them there is a phone number they can call 24 hours a day, 365 days a year and get a live voice. Someone will listen to them, someone will try to help. My job is to try to make the family caregiver’s job easier in any way I can. Often, since there are new PCAs assigned to the family through EIM, I end up acting as a mediator between the family caregivers and the professional caregivers they have coming into their homes. This is a new experience for the family caregiver, it can be difficult for them to adapt and sometimes there is tension there. The family caregiver can put too much onto the PCA. They ask too much; they want their whole house cleaned and that’s not what the PCA is there for. It’s important for the professional caregiver and the family caregiver to get along. I try to bring some balance to the relationship. I say, “You know, this is what the PCAs are here for, to help with this, this, and this.” I try to help them focus on what the PCA will do and to accept that and be appreciative. I understand how tense the relationship between family and professional caregivers can be because I was a family caregiver for five years. When I was in my twenties, my grandmother lived with my family in my home and she had the worst form of Alzheimer’s. She was yelling all of the time and she had no short-term memory at all. Our family wasn’t sleeping because of it, and I had young boys and a husband. It was really rough. I was going to RN school and working full-time. I privately hired a couple of people who came into my home to help with her care. I tried different people, people who were supposed to be professional PCAs. I would watch many of them walk right past my grandmother and never say hello. I would watch them throw her dishes in the sink at the end of their shift. I wasn’t asking them to do my dishes for me, but they wouldn’t even do her dishes from her meals. I was a tired family caregiver and sometimes the emotional strain of having the PCAs come was very hard for me. I felt that someone needed to be out there saying, “All right, PCAs, you are very important. I wholly believe you are so important and I couldn’t have gotten through that time caring for my grandmother without you. If you thought more about what’s going on with the family caregiver it would make your work environment better every day. If you thought about the person with dementia and thought about brightening up their day or doing something a little extra, it would make the relationship and the job better.” I really believe that caregivers, clients and PCAs all have to be remembered and respected for things to work out. Being a caregiver for my grandmother changed my whole direction. I didn’t finish RN school and I don’t regret that at all. I started a homecare agency that was run on my philosophies about creating a relationship with family caregivers and with clients. I knew some really good PCAs in the area and recruited some great people. Before we even started I asked them, “Do you know how it felt for me to see PCAs come into my home and go right past my grandmother and never say a word to her, or me? They weren’t treating her like a person, and that made me feel even worse because I couldn’t do anything about it. I needed them there because I needed help.” It was an important awareness, and that awareness

The family caregiver can put too much onto the PCA. They ask too much; they want their ole house cleaned and that’s not at the PCA is there for.

Our Stories

24

Continued from page 23

Someone to Care for Caregivers: Karen Bra’s Story

helped good PCAs do an even better job. I raised their wages. They made more money at my agency than they did anywhere else, and I always made sure I recognized them and how essential they were. At the same time I loved hearing stories from family caregivers that would call and say, “Oh, you wouldn’t believe. We baked cookies together while my husband was napping!” I loved the PCAs that worked for me, but I always had a strong connection to those family caregivers. I loved that company, it was my baby. But it also became a seventeen-, eighteen-hour-a-day job sometimes and so I sold it in 1999. I took a job with Elder Independence of Maine as a division assistant, just helping do general work. Then the opportunity came up to be a Caregiver Companion and work full time with family caregivers and I thought, “My dream job! Finally!”

Best FriendsTM

I often teach the Best FriendsTM approach when I’m working with family caregivers. Beyond lending a sympathetic ear or getting a caregiver out of the house for a while, I find that talking them about the Best FriendsTM approach can really help them to have better interactions with their loved ones every day. This approach can help people to come to terms with what’s happening. What if your husband or your grandmother was the rock of your family, someone you always turned to, someone you could always cry to? That person always held the family together financially, emotionally and all of the sudden that person gets dementia. It’s so hard to accept that. It’s so hard when you always went to your mom or you always went to your dad or grandparents, you always turned to your husband and you always had that support system there and suddenly that person is still there, but that source of support is gone. It’s a huge loss and they’re grieving that. There’s an acceptance with the Best FriendsTM program. It sometimes helps to show them a fact sheet or give them a book on what’s really happening. People don’t understand that Alzheimer’s is a disease in which the brain cells are actually shrinking away. They think that they can help it, help get those memories back but they can’t. As hard as it is to accept that you can’t look at your husband or mother the same way anymore, you can still love that person and learn to look at them a different way. I go into the situation and say, “Of course

you can still treat this person with love and patience; they may not be able to identify as a husband or mother, but what about as your best friend?” If they can accept that new role for their spouse or parent or grandparent, the situation can really turn around for that caregiver. It can help on the road to acceptance, and it helps them both preserve dignity. Dignity is really important. The person with Alzheimer’s is living a different reality and most caregivers have no idea how to deal with that. On Thursday, when your husband of thirty years is telling you that it’s Friday, of course your natural reaction is to go, “No, it’s Thursday!” It’s not going to help. He truly believes it’s Friday. If a caregiver can to learn to accept it and let it go, it can make things go much more smoothly. Then you have severe stages of Alzheimer’s where the client doesn’t remember their spouse. That’s so hurtful for caregivers. I go into so many homes and the caregiver says, “He doesn’t remember me!” They’re trying to make sense of it, they just cannot believe it. “You know me, of course you know me. You’ve known me thirty years; you married me.” But the person with Alzheimer’s just doesn’t remember. I try to be gentle, help them come to terms. We have to talk on a very personal level. Once caregivers learn to accept that they can’t get that old husband or parent back, then they want to try to learn how to interact in ways that will make their days together go more smoothly. Usually I don’t even meet the client with dementia. I work solely with the caregiver, and try to get her out of the home so she can have a break. If the caregiver wants a better understanding of the Best FriendsTM approach, I will actually go in for an afternoon and meet the client and try to role model to help teach the caregiver how it’s done. Sometimes Jack is sitting here and he says it’s Friday and the wife is frustrated. “It’s Thursday, honey. You know it’s Thursday.” I gently introduce a different idea, which is to accept that Jack really believes it’s Friday and by trying to convince him it’s not, it may just confuse him and make things tenser. What if we accepted that and tried to let it go? I smile and say, “Yes it’s Friday Jack, it is. And it’s a beautiful Friday.” I just let it go, then I redirect. “Your hair looks great” or “Your sweater is so pretty. Are you having a good day?” If the caregiver can let it go and move beyond it, it makes the client more peaceful and can make their interactions much smoother.

25Our Stories

The other thing with role modeling is when the wife says, “Jack, it’s Friday and it’s 11:30. You’ve got to go in and brush your teeth because we’re going to have company over later.” Caregivers want to give information to try to orient the person, but often it is more confusing than helpful. You can tell a person with dementia or Alzheimer’s what you’re going to do, they don’t need to be led around without explanation; but explain things nicely, and shorten and simplify. I’ll go over to Jack and say, “Jack, we’re going to brush your teeth now.” That’s all I say. When Jack understands that and responds, it’s great and the caregiver will be really pleased and encouraged by that. I love seeing them realize that if they can learn some simple changes, their lives with their husband or loved one can be more peaceful and they can communicate and have happier days together. I’ll start singing to the client and I can see that the caregivers are thinking, “What are you doing?” But when they see their husband start to sing, they might start singing, too. The client remembers those songs, and it lightens things up. When I leave I try to leave the caregiver feeling a little bit better, even for that day. Even though I worked with the client it was for the caregiver’s benefit, it was to make things a little bit easier. I really get good results with using the Best FriendsTM approach. I’ll come back again the next week and if the caregiver has been continuing to learn and try to use the program, arguments will often become fewer. The caregiver is learning a new way of communicating with the person, and life can be more peaceful. Sometimes I meet a caregiver and I know it’s not a good situation anymore. For the five years I cared for my grandmother I had nobody to turn to. My husband would say over and over, “You can’t do this anymore.” The more people would say, “You can’t do it,” the more I hid things. It would get really bad and I’d be totally burnt out and think “Oh, god, I don’t want to let my husband know that I’m having a really hard time.” I didn’t want to stop being a caregiver to my grandmother. I was the only one who could say that my grandmother needed to go into a nursing home. I didn’t take care of her until she died; I just finally said “I can’t do it any more.” Caregivers hide a lot; they cover a lot of pain because they don’t want to have people say, “You can’t do this anymore.” What I say to them is, “You can do it for as long as you feel that you are able, but you’re the only one who can say, ‘Now’s the time.’ You are the only one who can make that decision. It’s not going to be your daughters, not going to be your sons, it’s

Continued on page 35

If the caregiver wants a better understanding

of the Bt FriendsTM aroach, I will actually go in for an afternoon and me the client and try to role model to help teach the

caregiver how it’s done.

26

Seeing the Job Through New EyesI started to do the OA program because four years ago, when I first stepped into my nursing home, I was thrown directly on the floor with a list of my own because they were working short that day. I remember thinking to myself, “If I’d been a brand new CNA out of school I probably would have flipped right out.” I’m very active and had experience, so I wasn’t going to sit there and be useless, but to have my own list right off the bat was tough. I’d go into the rooms and these poor residents were confused. I just said, “Hi, I’m Karen, I’m new today. Nice to meet you. Um, let’s get up and get washed.” The CNA who was supposed

to help me did her best, but she was running around. Not any fault of hers, but there I was, just totally on my own. In many cases I didn’t even know if they could walk. I was getting one resident up and I asked, “Can you walk?” She said yes, but come to find out the woman was a two-assist. I was getting her out of bed and, whoops. Luckily I was on my toes and had experience, so I caught her and swung her back onto the bed. But someone new could have seriously hurt herself and that resident. That’s why I became an OA, because I did not want someone else to have to go through the shock of that experience. I’m the type of person that would stay and hang on for the ride, but other people would just be like, “See you.” That’s how you lose workers, and we need as many

AREN FARRINGTON has many qualities of a great CNA: flexibility, insight that comes from years of experience, an easygoing nature and good sense of humor. Karen has been a mentor to new CNAs as part of the Orientation Assistant (OA) program at her nursing home. This program is helping to lessen turnover rates by easing new CNAs into the job and making sure they have an experienced worker who is available to them, who is supportive and willing to teach them what they need to know. Karen needs to keep her mind busy in order to feel challenged. She has accepted a job writing the schedule for the CNAs at her facility. This is not an easy task since, as in many nursing homes, there is a real lack of CNAs who are available to cover shifts. Having to work without enough people is one of the biggest sources of stress and burnout for Direct Care and Support Workers, and the problem is prevalent in nursing homes across the state. Karen has a sharp mind, and effective ideas for trying to keep good workers and reduce burnout among those who’ve been working for a while. It is no small challenge, but Karen’s own CNA experience and strong connection to the rhythms of working “on the floor” makes her more than qualified to tackle this new job.

Thriving on Challenges

“Working with other people can be challenging, but one of the reasons I like

this job is bause it’s challenging. Somehow we make it work.”

Karen Farrington’s StoryK

27

good workers as we can get. When the nursing home started the OA program I knew immediately that I wanted to be a friendly face when new people walked through the door. I wanted to fight for them if they had a problem. When I started, I didn’t have anybody to fight for me. The OA program makes it so that doesn’t happen. It helps new workers’ comfort level when someone is there to meet them at the door or have someone to go to if they have a problem. At least they know, “This person’s helped me out before. If I need help, I can go see her.” A lot of CNAs that are supposed to help train will do things by themselves and not include the new person because they have so much work to do themselves they can’t slow down to show a new person what they are doing. The orientee will say, “I need help with this.” “Oh, well, give me a minute.” Then a minute turns into five and the next thing I know they’re running down the hall, “Karen, I need help. What do I do?” Sometimes when you’re a new employee you can’t express yourself as well; an OA can help get your voice heard to a Nurse Manager or the Director of Nursing. When I know that I’m going to have an orientation I will call the new CNAs before they begin working to try to make them comfortable before they even set foot in the place. And, hopefully, I can answer some of their questions over the phone and then when I meet them at the time clock and they’ll already know me. I crack a few jokes and get down to business. I’m always cracking jokes. I’m flexible and friendly if they accidentally mess up. I had an orientee recently drop a plate and break it. No big deal. She said, “Oh, the resident’s so mad at me.” She wasn’t mad at the new CNA. “At least you didn’t put the food back on the plate and give it to her. That would have been really rude.” I said that to her and then she started laughing and said, “You know, you’re right. It would have been different if she knew I had picked up the food and given it to her anyway.” Usually the first day is more paperwork than anything else. Then there are two or three days of job shadowing, where the orientees will not touch a resident unless they feel like they want to be helpful. They come with me in the room, they meet the residents I’m working with and get familiar with them. Then as the day goes on they feel a little more comfortable where they can help me out with the bedpans. That’s how they learn about the residents and what they can and can’t do. As time progresses, depending on the person, they will settle down and start to really help out. It takes different amounts of training for each individual person to feel comfortable working with the residents. I find it depends on the orientee’s personality. You know you’re going to have a good worker when they get right in it; you’re looking at someone who’s going to jump right into the job and be part of the team. Then there are those who come in and say, “No, I’m just here to watch you. I’m here to watch, that’s it.” Well, they only get six to eight days of training and if they’re still having problems by the eighth day we have to sit down and look at where the problem is. Is it that the OA is not helping this new person to acclimate to the environment? Or is it just the person that can’t handle the workload? Maybe they just can’t handle ten residents and they need to go to assisted living where they can work with the residents one-on-one.

“It tak different amounts of training for each individual person to feel comfortable working with the ridents . . . You know you’re going to have a good worker en they g right in it; you’re looking at someone o’s going to jump right into the job and be part of the team.”

Continued on page 28

Our Stories

28

The Rhythms of the JobEven with the OA program, problems still come up when we we’re really short-staffed. Say, on her second or third day an orientee comes in for training, and it just happens that two people called out that day. Someone decides, “Well, Karen, we’ll just put you and the orientee on a wing. That will cover that wing and we can use the remaining people for the other wings.” Even though she is still working with me, on the same wing as me, the orientee is being viewed as a fully trained worker who’s ready to have her own list, basically. The orientee is going to get overwhelmed because she doesn’t know the residents yet. She’s either going to panic or roll up her sleeves and say, “Let’s go.” Those are the ones that you know are going to make it. But the ones that panic - it’s hard for the OA if the new person doesn’t know what she’s doing yet. Plus, I’ll have my own 14 residents to deal with. It’s a terrible situation for both of us. When it happens, I don’t want to scare them by saying, “Well, we’re short today. This is just what happens, get used to it.” Instead I’ll be like, “I’m sorry this has happened. We’ll work together. I’ll do the best I can and you do your best and we’ll get through this day.” Hopefully, the next day it won’t happen. Sometimes it does happen again, and that might be enough to make someone decide they don’t want to work there. Because it’s such a problem, we’ve implemented a policy that says that an orientee is an orientee until their training has been completed. If that means if we have to work short with just four CNAs, we work with four CNAs. That’s hard to swallow because some of the other CNAs don’t think that way. They think, “Hey, there’s this extra body just standing there. Come on, we need the help.” It makes the orientee very pressured. You don’t want them to be pressured, you want to kind of nurture them until they know what they’re doing. I think one of the problems with the CNA classes is that they don’t give the students enough hands-on training. The reality is that working in a nursing home is not an ideal job for some people. It’s hard work. You can’t do this job if you don’t want to get dirty, don’t want to help. Also, if you can’t deal with the elderly being sick you’re going to have a hard time. Some orientees have a hard time with the aging process and here they are on their first day of work looking reality in the face. These

Thriving on Challenges Karen Farrington’s StoryContinued from page 27

are elderly people and this is what you might end up being like. I’ve had a couple that just freaked right out because they weren’t ready to face that situation. The new students have to know time constraints. They have to be flexible, be able to jump around because sometimes they don’t have forty minutes with a resident. Sometimes they’re lucky to get fifteen at the most. Working in a nursing home is a rhythm, and if you have somebody not in the rhythm we all feel it. It’s all about timing—getting them up, getting them dressed, getting them to breakfast. If you fall behind you’re putting everything behind. The whole day’s one revolving door and if you’re falling behind it means someone is not getting what they need, and another worker’s job is going to be harder. The staffing at our facility changes a lot. I can’t say I’m short-staffed a lot, but I can’t say we’re working fully staffed very often. It’s kind of in the middle. We can go a couple of weeks and be six on the floor, and then we can go another two weeks when we’re only four. If we’re working short, not only do you do your six or seven residents, you pick up two more, and you still have to work under the same time constraints. Most of the time I don’t cut too much out of the residents’ routines. I can’t; it’s all necessary. I just work at a double pace. We have a couple of residents that will ask, “Are you short today?” And I’ll just say, “Well, we’re less than ideally staffed.” That’s my quote, “Less than ideally staffed.” People get such a kick out of it because it’s like saying we’re working short without actually saying it. The residents don’t usually get upset at us when we have to rush. They’re upset with the office people, because they know we need the help. They don’t get mad at the CNAs because they know we work awful hard. They understand that. They just get upset that there’s no one there to help us. It surprises me how much they stick up for us. They’ll go to the resident meetings and say, “You need to get these ladies some new co-workers. They’re running ragged. You need to do something about this.” But then of course you have the few residents who don’t care if you’re working short, that still have to do their morning ritual. I don’t skip over what they want, but I’ve memorized their ritual so well that I can do it in half the time. Nothing really gets skipped, it’s just a matter of managing my time to meet their needs more quickly. And

29

when I’m working ideally staffed then I can take the time to fix their hair a little bit more than I would do if I was short. A seasoned CNA doesn’t have a problem managing time or dealing with the difficult situations that typically come up with residents. A new CNA might have problems because they’ve never had to deal with it before. For example, when a resident says, “I don’t want to get out of bed.” Well, you can’t leave the resident in bed all day because it’s bad for their health. A seasoned CNA will say, “Oh, I know you don’t want to get out of bed today, Mrs. So-and-So. But, you know, you really don’t want to stay in bed all day because it can really just make you feel worse.” It’s all in your wording. “Why don’t we get up, get dressed, then if you want to lie down again after breakfast that’ll be fine.” And before you know it, they’re up and everything’s fine. But a new CNA who doesn’t know the residents very well will just leave them there and go on to someone else because they don’t realize there’s another way to approach the situation.

A New ChallengeA couple of weeks ago I started doing the scheduling at work. The difference between being a CNA and a scheduler is that I’m not working on the floor all of the time, I’m at a desk with a computer and a phone trying to put people in the schedule so that I cover all the holes that are there each week. I’m so used to the crazy days I had as a CNA on the floor that I thought being a scheduler would be boring. I figured on sitting there behind a desk looking at the clock being like, “Oh, my god, this day is going so slow.” But, no. From the time I get there in the morning, I am swamped. I’ve been eating lunch at my desk trying to catch up with things. And before I know it I look at the clock and it’s 3:30. I think, “Wow, where did time go?” Then I look down and I see I filled that hole in the schedule, and that hole and that hole. It helps that I know the different floors and I know what the workers are going to need. I know they’re going to need six CNAs on this side and they’re going to need two here. I know what’s going to make the CNAs comfortable because I’ve been there. Because I am on good terms with almost all of the CNAs I can go out onto the floor and say, “Oh, I need a little favor.” “Oh, sure Karen. What do you need for me to help you?” I’ll ask if they can cover this shift or that one and sometimes they say no and that’s fine. I don’t push the issue. A lot of the work call-outs are related to family. I’ve always had a “family

The reality is that working in a nursing home is

not an ideal job for some people. It’s hard work. You can’t do this job if you don’t want to g dirty, don’t want to help.

Continued on page 30Our Stories

30

Thriving on Challenges Karen Farrington’s Story

first” philosophy anyway. If my son or daughter gets sick, I don’t want anyone saying, “No, you have to come to work.” If someone is calling out for a reason like that, okay. It’s a problem for us, but family does come first. Then there are people who just call out all of the time and I’m keeping track of them. That’s a new thing I’ve started as a scheduler; going back and tracing how many call-outs people have had so that the Director of Nursing can address the issue with them if it’s become a problem, and hopefully that will stop them calling out so much. I have been doing things a little differently than the last scheduler. Especially the fact that I’ve enforced the policy that no matter how short we are, an orientee gets full training with an OA. We can’t keep workers if they’re being thrown out on the floor without being trained. That’s how you lose good people. The other CNAs are going to have to accept it and I do feel bad because they’re working short so much right now. I know how hard that is; I have to deal with it myself. We need new people to come in and stay. Right now if somebody calls out I don’t have a backup because there are no people. So other CNAs can disagree about my putting an orientee with an OA and keeping it that way, but in the long run it will be for their benefit. My biggest challenge right now is trying to get the schedule at least a month ahead of itself. Right now I’m barely keeping up with it day by day. They all know their days off and they all know their days on and unfortunately I don’t know them yet. Thankfully there’s a lot of understanding in their direction. Still, there are certain things about the schedule that have irritated the CNAs and nurses. A couple of times people have come in really upset. I’ve had to tell them, “Look, I’m just learning everyone’s schedule. I’m sorry. Just because there was a mistake on the paper doesn’t mean I won’t fix it and make sure you get your hours.” That’s the biggest thing; if their name is not on that schedule when it’s supposed to be, they get nervous. People are not happy about the idea of having hours taken away from them because they are counting on the paycheck. I miss working with the other CNAs. Because I am at a desk I will tell people to come see me. I have a lot of people who come in. I have a chair next to my desk, people come and catch me up on what’s going on out on the floor. It’s a family atmosphere where I work. It’s really unique in that way. We’re very friendly, open; we talk

about everything under the sun. When new CNAs come in, we try to just blend them right in. It’s great when people come in willing to work and ready and eager to learn in this new environment. You need to be easygoing, because you’re going to have to deal with a lot of stress, and you need to be flexible enough to handle whatever situations arise with the residents. You’ve got to take it with a calming factor, you have to be able to organize yourself and adjust to whatever develops. I know that everyone I work with will honestly give new CNAs a fair chance. But the reality is that it doesn’t always work out perfectly. For example, as CNAs we care for all of the residents, but we each have our own lists of people that we work with each day; getting them up, bathing them, dressing them, things like that. Often CNAs will team up with each other to share the workload. Two CNAs will combine their lists and go into rooms together to help with each other’s residents. If you work well together, it can be much nicer than working alone. Well, if a CNA is doing things really slowly, or her work is not up to par people don’t want to team up with her. They don’t want to share that responsibility with her because if she doesn’t get residents done in time, they don’t want to get blamed. She ends up having her list and that’s it, and she takes full responsibility for it. The CNAs I work with would never be unkind to other workers or do anything to make their job harder because they understand that we are a team, so they’ll give her a hand if she asks for it, or of course when she needs help lifting or transferring. It’s tough because CNAs sometimes feel bad because they may like her as a person, but they just can’t afford to be blamed for someone else not doing good work. Working with other people can be a challenging, but one of the reasons I like this job is because it’s challenging. Somehow we make it work. I like doing the scheduling now because I really believe I can help change things for the better, I can get the help I know they need. I like keeping my mind busy and that’s what the OA program was good for. I had to pay attention and see the job through new eyes all of the time. I’m glad I got offered the scheduling job because it was time for a new challenge. I love being a CNA though, and thankfully with the new scheduling job I can still be a CNA on the floor a couple hours a day. I do two hours on the floor each morning and then go to my office, and it keeps me really in tune with what’s going on. Plus, I like being out on the floor because it offers its own challenges; dealing with other people, helping, making a difference, flying by the seat of your pants sometimes. It’s crazy sometimes, but I do miss it - and I do love it. ■

Continued from page 29

31

Common Sense and Patience:Arlene’s StoryContinued from page 9

through MaineCare and other cuts to the agencies that do the consumer-directed personal assistance services programs. One effect of all of these cuts is that we expect to lose hours of care for Kevin. Right now he can get funded 100% of the cost of living in a nursing home per week. That is going to be cut, so it’s 90% of what it costs the state to put someone in a nursing home each week. Kevin is going to be losing sixteen and a half hours of care per week. On top of that there are MaineCare cuts coming soon, so that the eighty-six and a half hours of care that he has left every week, as of August first will then be cut again. More than likely I feel that Kevin will end up in a nursing home - if not right after his care gets cut back, very soon thereafter. He just is getting worse and by getting worse. He needs more care, not less. He’s been lucky to stay home as long as he has. But we can only volunteer so many hours. We’ve got families. And basically that’s what it boils down to is: if he needs the help and we can’t get paid for it, we’re going to be volunteering. His daughters work, which means they can take vacations they can take sabbaticals, but still they live in a different place than he lives. It’s not convenient to run in and do this or run in and do that. They’ve got lives. If the cuts are too big, if he loses sixteen and a half hours originally and let’s say they cut another ten on that because of MaineCare, that’s twenty-six and a half hours less he’ll have someone with him each week. That’s too much time for him to be alone. To cut twenty-six and a half hours of care out of him will mean a nursing home. If he doesn’t have me and the other girls who’ve been around forever to care for him anymore, the state’s going to have to start paying for physical therapy. They’re going to start paying occupational therapy for him. Right now I and his other caregivers have a say in his therapy because we’ve been around him so long. We just look at him getting around and say, “Kevin you’re doing it this way. How about if we do it that way?” We know how he moves. Somebody else as an occupational therapist has to come in and watch him, and see him do something several times before they get the body mechanics of how he moves. It’s going to be completely different in a nursing home setting. They won’t know him. What’ll I do for a job without Kevin? I probably won’t be going into the physical part of it again. I will probably try to switch over to mental health or doing something

with children or something like that because I physically, physically . . . I don’t think I can do it. I’ve got arthritis in my hands, I’ve got arthritis in my lower back, my hip, my knee, my ankle. There’s no way I’m going to be able to continue. The more hours I put in, the more I hurt. And up until about three months ago, I had very little problems with my hands. Now I’ve got major problems with my hands. I did home health care a few years ago. It was okay, but I had a bad experience. I had a little lady whose family wasn’t taking care of her. I was very uncomfortable with that scenario. I don’t think she was getting the nutrition she needed. Let’s say I was in at five o’clock until midnight, and I would take a snack or something to munch on and she’d be right there eyeing me. And I’d offer it to her and she was actually grabbing stuff and she would just eat like it like there was no tomorrow. I reported it and they sent Elder Affairs to investigate, and suddenly food started showing up in the cupboards. Things did improve and then she had a heart attack and ended up in a nursing home. Most of the people that I had in my home care job eventually ended up in a nursing home because they just couldn’t get enough care where they were. There wasn’t enough family to care. With that job each client was different. I didn’t come in contact with the family a lot, if any in some cases. I went in, I went out, I went in, I went out. And they were always short-term in my case. A lot of caregivers will have the same client week in and week out, but I didn’t. It would be hard to do that kind of thing again, because when I leave a client’s house I don’t know what’s happening to them. Kevin and I know each other inside and out, I’m quite sure. He’s a friend. And when he goes I’m not only going to be losing a client, it’s going to be a friend. We’ve lasted longer than most marriages! Thinking about losing Kevin to a nursing home is hard, because I get a lot of satisfaction knowing that I’m helping somebody in the final stages of their life. While they’re here I can do the best I can do to make their lives more comfortable. And that’s the same thing I want for me when my time comes. If tomorrow I’m going to be in a wheelchair for the rest of my life, I want somebody with some compassion, somebody that can laugh with me, somebody that can cry with me, and somebody that makes me feel comfortable to be around and that I’m not a burden. ■

*All names have been changed.

32

slot for that 96-year-old woman I talked about earlier, so I had to go in and take care of Eric before I went down to her house. This, plus I worked around Eric’s schedule at the day program. I had to shift a few clients to other workers in order to take on Eric in the manner in which he needed services. Eric just about challenges every part of my ten years of training and experience. He is total care, which means I bathe him, I dress him, and feed him. I also assist him with medications. He has a pill box that I put his meds in at his direction, then help him take them. I make his bed, I sweep and mop his floors, I cook whatever he wants for meals, I do up the dishes, I even empty and clean the cat’s box. I help him keep his appointments straight, and remind him when he has something coming up. He is pretty good at keeping a lot of information in his mind but just to make sure we use a double-check system. I remind him of things and he reminds me of things. At first, Eric was very leery of having a man come in and tend to him because of things in his past. He had used other agencies in the area with no success, so he said, “Okay, I need this, so I’ll go with this guy and see how it works. If it doesn’t work, we’ll make new arrangements.” After a couple weeks, right in front of me, he talked with my supervisor on the telephone and said, “I resolved my issues, I want this guy here. I feel comfortable with him here.” Our relationship has just gotten better from there. I can be dead tired and have to drag my backside out of bed to go to work, but the minute I go into the house it’s like a switch is turned on for me. Can you imagine day after day going to work with a smile on your face, upbeat? It’s impossible. But you have to do it and he helps. Of course, when he’s down he drags you down a little bit because it’s frustrating that I can’t push a button and make things better. It pleases me he has gained weight. He’s eating better. When I first started working with him, if he was lying on his bed it was like looking at someone with anorexia. He was just all bones with a little bit of skin stretched over them. Now when he is sitting up in his wheelchair, he’s got a paunch – a belly! I can tell he has gained weight because of the way we transfer him from his chair to the bed, or the other way around. At first, I could actually pick him up and lift him around to the bed or chair. I didn’t do it that way, but he was so light that I could have. Now, we have to use the bunny hop method; a modified stand and pivot. My arms

Compassion and Insight: Mike Jon’ StoryContinued from page 13

and joints can tell the difference as well. As I get older and my arthritis progresses, it becomes harder on me. If he continues to gain weight there will be a time when we’re going to have to use the Hoya lift. Eric discusses problems with his girlfriend with me; he discusses problems with his family with me. Sometimes I’m dealing with his depression, anxiety, things that I have learned about in the past. So, it all plays in – CNA, PCA, homemaker, mental health worker, medications. His is a challenging situation. He is a joy to be with because when his mood is up there, he has a laugh on him that would make a rock laugh. You just can’t help but fall in love with the guy. A few weeks ago, Eric got himself a new little kitten. He loves baby animals. He already has a cat that’s five years old that’s very important to him. Well, the new kitten just grew on me, literally, because I’d be bathing Eric and she’d be there trying to climb up my leg to join in. One day, he and one of his other aides were doing something in the bedroom; probably changing into more comfortable clothing for just sitting around the house. Eric uses a three or four hundred pound electric wheelchair and he’s always very careful of his animals and people. But the kitten moved just a little bit too fast at the wrong time and he backed over it and killed it. The other aide was actually holding the kitten when it expired. That alone is tough, to be holding something in your hands when it dies, but then to have to deal with Eric’s emotions was very difficult. The first thing out of Eric’s mouth when I came in that evening was about the kitten. “I murdered my own kitten. I killed my kitten!” Now, how does one console someone in a situation like that? I just had to keep telling him that he is not a bad person, that he loves animals and would never intentionally hurt one. I told him he cannot see all points around him at the same time and that the kitten just moved too fast at the wrong time. He still had trouble for a couple of weeks just talking about it. You see, as PCAs, this is what we do. This is what we run into, almost on a daily basis. This job is not just a matter of sweeping floors, doing dishes and washing somebody’s behind. An RN or an LPN or a therapist comes in for a short visit for a very specific purpose. Of course, they would listen if a client had something to say, but they just don’t have the time to stand there and get into it. As PCAs we don’t deal on that level. We go into that home for general purposes and that means you can get hit with anything going and you have to be ready for it. A message that I would impart to people is, don’t just look at the surface of what we do. Think about what a person coming into your home would go through if they were working for you. Think of the

33

Continued from page 17

What We Teach, What We Learn:

The Work We Do TogetherWuzzy is Kris’s mother, and she and Kris are very close. Most people would call the agency if they had questions at their site. We don’t bother, we just call Wuzzy because she really cares and she’s just down the road. Wuzzy is such an integral part of Kris’s life; she’s over at least three or four times a week. Even when she’s away, we all know how to reach her. She’ll call us just to check in and see if everything’s okay and whether Kris misses her. Sometimes Wuzzy will come over and Kris will be all kisses and saying “Oh, Mom, I haven’t seen you in hours.” Other times it’s like, “Mom, I don’t remember inviting you over to my apartment.” She loves her mother, but she does enjoy her independence. It’s a funny personality she has. What Wuzzy really wants the agency we work for to do is to find Kristen some activities where she can interact with the community and make some lasting relationships with different individuals. We gave them lists of things that Kristen is capable of doing. We even made up a list of jobs she can do to go with her skills. So we gave them about fifteen options for community activities. Kristen and I got tired of waiting for the office to call the library so we walked in one day and said, “Hi. Can we volunteer here?” Kris and I got tired of the office not calling to

set up the children’s museum so we walked in and said, “Hi. Can we volunteer here?” Wuzzy asked the church if they had anything they needed help with. They needed volunteers for their “Meals for Me” program. Wuzzy said, “Great, Kristen’s coming to help.” All of the places she works love her. She can just show up and they’re glad to see her. A few months ago Wuzzy had someone from the upper management of our agency come down one day and talk about community-building activities. The woman who talked to us wanted to know what some of the things to do around Brewer were. We told her about all the places Kristen goes. She said, “What do other 28-year-olds do? Isn’t there a bar around here where they have singles night?” I was in shock – bring Kristen to a bar? What are we supposed to do, put a twenty down and tell the bartender to keep them coming? Hide in the corner until she needs us? This lady was completely out of it and it was so sad. They don’t see the day-to-day and they don’t understand what kinds of things Kristen wants to do and should be doing. They don’t know a thing about her. I had to do a NAPPI training for work – Non-Abusive Physical and Psychological Intervention. It basically explained to me how to defend myself if Kristen were to come at me with a steak knife. I sat through the whole training thinking, “Kristen can’t even hold a steak knife.” The worst thing that will happen is that if we’re having a really bad day and I do something that really irritates her, she might pinch me. I say, “Kristen, don’t do that.” If she does it again I say, “Kristen, don’t do that” and I hold her hand because she can’t pinch me while I’m holding her hand, so she stops. We were sitting in this training trying to figure out how to get rid of behaviors, and that’s fine. But we also have to figure out why she’s behaving like this. There has to be a reason, right? For the longest time we couldn’t figure it out, but she just hated the cartoon Snow White. Normally Kristen loves Disney movies, she has all of them and watches them over and over again. Sometimes she would put on Snow White and try to watch it, but she never made it through to the end. One day we were in the kitchen and she was watching it and she started crying. Usually at that point we just turned the movie off, but this time she left the room and it was at shift change so we forgot to shut the TV off. She came back into the room just in time for the end and sat down and watched it, happy as could be. We figured out that the reason she would get so upset was that she didn’t like when Snow White falls asleep in the movie because she thought that she dies. She had gotten so upset that she never watched the entire movie to find

things they would have to do, the people they would have to encounter in all the various situations life dishes out. I’m very pleased that they have changed our designation from Personal Care Attendant to Personal Support Specialist. If we are doing our job right, we provide support in a wide range of issues and situations, and we do become specialists. We work on a very personal basis. Do you know how many people I meet who ask, in casual conversation, what I do for work? When I tell them that I am a Personal Care Attendant, a Personal Support Specialist, they sort of wrinkle their noses and say something like, “Oh, you go in and give bathes and sweep floors, and stuff like that.” Then they will add “I could never do that.” Well, if the general public can’t do that, doesn’t that make me a specialist because I do it effectively, and continue to do it? That needs to be recognized. ■

Continued on page 34

Jennifer Grodewald’s Story

34

Continued from page 21

An Open and Loving Heart:

fun, she’s energetic, Keatz likes her. Sometimes they’ll have battles back and forth but Kara wins anyway. She takes Keatz to the library or plays basketball with him. Sometimes they get together with another person and the child that they take care of and they go places like bowling, or out to dinner, or they go to the movies or they go to the Children’s Museum in Portland. He gets very excited. I don’t tell him before he goes, because then he’ll look forward to it and if he can’t go, he gets really upset. I’d rather it be a nice surprise. I had gone to other agencies and they just weren’t consistent. The person would call out again and again and he would be so disappointed about the fact that they didn’t show up. So finally I said, “Look, I need somebody who is going to be dependable and work with him. If we get a phone call saying that she’s not showing up, there should be somebody else you can put with him.” When they’d finally hire somebody, we’d find out that they were leaving in a couple months’ time. That’s no way to hire somebody. If they needed to go to a job with more money or to do something else because they didn’t like it, what about Keatz? He likes the girls and gets attached to them and then they are gone. You know, it should work better than this. ■

Continued from page 33

What We Teach, What We Learn:

out that she actually woke up! It’s little things like that that you wouldn’t even think of that for her are a big deal. Kristen has a habit of going into the kitchen and picking up her cup, and when she realizes there’s nothing in it to drink she just tosses it. It’s her way of asking for a drink. One day I figured out it’s so much easier for me to pour a little bit of juice in the bottom of her cup and leave it in the refrigerator and say, “Alright. It’s right there. You know how to get it, so don’t go throwing cups across the room.” She can go in and drink when she’s thirsty and put it back. I only leave a few mouthfuls, because sometimes she can’t hold it and she’ll just drop it. I figured it’s easier to clean up the mess after and let her have some independence than making it so that every time she wants a drink she has to come and drag me to the kitchen. Think to yourself, “What do I have to do today?” Imagine having to do laundry, dishes, go to the bank, go grocery shopping. Sometimes I’ll see Kristen just stand at the bottom of a flight of stairs and know she’s saying to herself, “Alright, I need to get up that flight of stairs but first let me look at it. Okay, there’s nothing in my way. Now, what I’m going to do is I’m going to hold on to the railing and take one step, then go from there.” She has to make a whole plan to go up a flight of stairs, and she has to do it every time. We take so much for granted. She has to overcome so much more than us, yet people think that she’s somehow worth less because she can’t do certain things. They think because she doesn’t hold a steady job and doesn’t have her own income she’s a lower member of society, or not deserving some things because she doesn’t work for them. They can’t understand, because they don’t see all the work we do together every day. ■

Jennifer Grodewald’s Story Susan Tucker’s Story

35

Someone to Care for Caregivers:

not even going to be the doctor.” That caregiver, that wife, that husband is the only one who can say, “I’ve had it.” They need to realize that it’s affecting their whole life. And sometimes a nursing home is the best option when caregivers just have total burnout. It happens and it’s okay. After their husband or wife goes into a nursing home, I might call that caregiver in two weeks, three weeks to check in and say, “How’re you doing?” Even if they visit the nursing home every day, they’re still amazed at the weight that’s off their shoulders.

Giving 100% Every DayMay 6th of this past year, I had a life-threatening illness and almost died. I thought one night that I was getting Strep throat or something; my throat just started feeling really full and sore while I was eating dinner with my family. I drove myself to the ER to get some antibiotics, and by the time I got there I could hardly breathe. The doctor said, “You have something called Epiglottisis,” which is an illness that happens very, very rarely; like to one in a million people. My throat was closing up, and the doctor told me that I might die, that he couldn’t even guarantee me thirty more minutes. He said, “Do you want me to call anybody?” I said “No, no I’m okay.” I think I was in shock. So, anyway, they had to do an emergency trach with no anesthesia. I changed my mind while I was laying there and thought, “I wish I had said goodbye to my husband and my boys and told them I loved them.” When I said that to myself I remember feeling like something was holding me; not like a person, but like a soft glove was holding me. I remember this most velvety voice said, “They already know,” as beautiful as I’d every heard anything in my life. It was a comfort to me. Well, I came through it and feel like I was given a second chance. In some ways, I think I have changed. Whenever I start to get uptight or anxious, a wonderful calmness comes over me. People that know me well have commented that they have noticed a change. When I sit and talk to caregivers facing stress in their lives, I think I am better able to calm and reassure them now. Our visits and phone chats are meaningful because it is special one-on-one time, time for connecting. There is laughter and sometimes tears. We talk about memories and how

important our memories are. Best FriendsTM helps with those memories because if a caregiver can accept that their loved one can’t get their memories back, they can at least live peacefully for the rest of their days and make new memories together that the caregiver can keep. I talk to caregivers about memories because each day they spend with their loved one is very precious. I feel like I got the inside scoop on something, you know? I have lost quite a few caregivers because once the consumer with dementia or Alzheimer’s dies, we have to end our work with the caregiver. I had a funeral director tell me something once, and it really helped me when I’ve lost someone to dying. He said, “Every family that walks in gets 100% of me. I’m there for them 100%. But you know what? There’s always another family who’s going to need me. And I’m going to give them 100% of me as well.” So I always have to figure out, “What is 100%?” I think it’s just giving your time to somebody and letting them know they matter, and that’s what I do. I give 100%, but I always know that there is another caregiver and I need to be 100% again for tomorrow. I can completely wrap up my day at the end of the day. When things get really tense, I go for a ride and turn the music up as far as I can. I love music. I love everything, all kinds of music, even rap. So, I go for a ride and turn the music all the way up and it’s such a release for me at the end of the day. I had a caregiver once whose husband was downtown shopping. I left the house and he saw me go booming by. He went home and said, “You should have seen that Karen go by downtown. She had her radio blasting.” She calls me up and goes, “What is up with you?” I just laughed. I love doing it, I just love it. That’s how I always let go of the day. I think it’s a stress release for me. Things like this are important because I have to know how to take care of myself because if I didn’t, I couldn’t help caregivers. I have to be a caregiver to myself, just like I always tell caregivers, “Remember to take care of you, too.” They are an inspiration to me, and I love my job. I can let people go when our time working together is done because I know that I helped the caregiver get down the road and be there for their loved one. It’s a long road and it’s a tough road, but at least they didn’t have to do it alone. ■

Continued from page 25

Karen Bra’s Story