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Life @fter Diagnosis

Hospice – AT-

Bereavement

The information presented in this file should NOT be considered legal or medical advice. No additions or changes in treatment

should be considered without consulting your physician first and always talk to your legal advisors before signing any documents.

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• You need to prepare with time to deal with hospice

• Hospice can be at home or at a specialized center

• If you choose to have hospice at home, you will have to: Learn to use their equipment

Talk to their Social Workers until all the rules and regulations are clear to you

Make sure you understand the medications they will star prescribing and feel confortableadministering them

• Make sure the Hospice doctor is familiar with the patient’s illness and particular needs and try to

keep your old health care team engaged in some way, even if its only via email

• Hospice does not have to be forever and does not imply you will not be treated. Talk about yourmedical options with their doctors and nurses

• Most probably, you will need to sign a Do Not Resuscitate Form. In Florida has to be printed in ayellow paper

• This would be a good time to sign the Anatomical Donation papers if you have decided this is thebest option for you and you have not done so

• If you decide to hire in-home help privately, please remember you will become an employer, and as

such, will have to pay Social Security, unemployment payroll taxes, etc

• If you have Long Term Care insurance: Insurance companies have different criteria for payingbenefits. Some require only a doctor’s order. Others base their coverage on the policyholder’s

ability to perform everyday tasks such as bathing, dressing and feeding themselves. These tasksare called Activities of Daily Living, or ADLs. When an insurance company uses ADLs as aguideline, the difference between someone being able to perform these tasks with physicalassistance, supervised assistance can mean the difference between eligibility and ineligibility

Hospice

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If ready for Hospice, you can start by contacting … 

For a brain tumor patient, please check: www.brainhospice.com  

Suncoast Hospice - http://www.thehospice.org/  

Homeinstead: These senior home care services may include assistance with trips to the doctor, reminders to take the right medication at theright time, meal preparation, light housekeeping, errands, shopping and even Alzheimer's and dementia care.

Center to Advance Palliative Care (CAPC), www.getpalliativecare.org 

National Association for Home Care 202-547-7424 www.nahc.org 

National Hospice and Palliative Care Organization (NHPCO) 800-658-8898 www.caringinfo.org 

Serving the Miami-Dade County community http://www.hospicesouthflorida.org/ or you might want to check also:The Alliance for Aging,which has been designated by the State of Florida Department of Elder Affairs as the Resource Center for Miami-Dade and Monroe Counties.

International Association for Hospice & Palliative Care http://www.hospicecare.com/  

The nation’s largest provider of end-of-life care http://www.vitas.com/  

Catholic Hospice offers end-of-life care to people of all ages and fai ths throughout Miami-Dade, Broward and Monroe counties, Florida.http://www.catholichospice.org/  

One of the largest hospices in the nation, providing caring for persons with life-limiting illnesses in Florida http://www.covenanthospice.org/  

The National Caregivers Library was created by FamilyCare America, Inc. and is one of the largest single sources of information and tools forcaregivers and seniors in the country http://www.caregiverslibrary.org/Default.aspx?tabid=375 

An online destination for those seeking information and support as they care for aging parents, spouses, and other loved oneshttp://www.caring.com/  

Excellent pain resource site, for caregivers and health care professionals http://www.partnersagainstpain.com/  

Palliative care info for cancer patients http://familydoctor.org/online/famdocen/home/common/cancer/treatment/722.html 

List of resources and providers by State http://www.getpalliativecare.org/resources - http://www.getpalliativecare.org/providers 

Remember to have at least a Health care power of attorney and the DNR forms signed and in a safe place. You will need to sign an AnatomicalDonation form also if you have decided to donate the body to science. Contact you local med school university to get a copy.http://www.ilrg.com/forms/st_healthcare.html 

ARTICLE FROM HEALTH USNEWS / MDANDERSONhttp://health.usnews.com/health-conditions/cancer/information-on-palliative-care#6  

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Most states also provide for special do-not-resuscitate ordersthat are effective outside of hospitals, wherever the personmay be in the community. These are called out-of-hospitalDNR orders and generally they require the signature of the

physician and patient (or patient's surrogate).

A DNR order does not mean "do not treat." Rather, it meansonly that CPR will not be performed. Other treatments (forexample, antibiotic therapy, transfusions, dialysis, or use of a

ventilator) that may prolong life can still be provided.Treatment that keeps the person free of pain and comfortable

(called palliative care) should always be given.

A do-not-resuscitate (DNR) order placed in a person's medicalrecord by a doctor informs the medical staff that

cardiopulmonary resuscitation (CPR) should not beperformed. This order is useful in preventing unnecessary and

unwanted invasive treatment at the end of life.

Do-not-resuscitate (DNR) order

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Assistive Technology

From Caregiver.org - Sometimes called assistive devices, independent living aids, and adaptive equipment,assistive technology (AT) can help your loved one live more independently before or during Hospice. It mayalso make your job as a caregiver easier! Many manufacturers provide nowadays a wide range of products and

devices. It can be confusing, however, to determine which products might be right for your loved one.

Here are a few basic tips to help you in this task:

Focus on the actual tasks your loved one wants or needs to do when choosing devices.

Generally, it is best to pick the simplest product available to meet the need. Simpler devices are often easier touse, less expensive, and easier to repair and maintain than more complex devices.

Ask experts that provide care to your loved one, like rehabilitation specialists or physical and occupationaltherapists, about which type of technology might be best.

Ask other people (or support groups on line) with disabilities what products they have found to be helpful.

Ask to use the device on a trial basis to see if it is truly going to meet your loved one’s needs. 

Ultimately, your loved one’s opinion about a certain piece of AT is the most important. The device needs to be

comfortable, attractive, and simple to use.

The following website provides comparisons of assistive devices and is a good resource for consumers tryingto decide which equipment and devices to purchase:

Technology for Long-Term Care

(213) 371-2354

www.techforltc.org 

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Types of AT

Communication AT

Modified telephones which may use large buttons, headsets,speakerphone capabilities, or keyboard and visual displays to maketelephones useable by disabled people.

Computer technology can allow people to stay in contact via email,while more sophisticated technology can employ modified keyboards orvoice recognition software to enable disabled individuals to usecomputers effectively.

For people with communication difficulties due to stroke, ALS, aphasia,quadriplegia or other disorders, assistive technology can be veryhelpful in allowing them to communicate with others: Communicationboards can be simple low-tech plastic board or automated boards withvoice input or a computer screen are also available. Voice- or eye-activated communication systems, speech amplification systems, etc.

Home Modifications

You may be able to make some simple modifications to your lovedone’s home with relatively little cost or assistance. For larger modifications, such as widening doorways, lowering counters,remodeling hallways and installing lifts or elevators, you may need tohire a licensed contractor.

Two useful checklists to determine if your loved one’s home needs toundergo some changes to make the house safer and more accessiblecan be found at the following websites: www.homemods.organdwww.rebuildingtogether.org/files/1192_file_Rebuilding_Together_Home

 _Safety_Checklist.pdf.

For links and photos please check the Help Guide on the film’s website 

To read the complete article, go tohttp://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1412 

Independent Living Aids

A wide variety of products and appliances which help people perform“activities of daily living”–i.e., eating, food preparation, bathing,dressing. Many of these items are available from drug stores andlarge retail stores:

Personal Care Products

Personal care products are designed to help people with physical or

cognitive limitations dress, disrobe, groom and maintain good hygiene.

Medication Aids

Pill organizers to ensure that correct dosages of medications aretaken each day. Timers and mini-alarms to remind your loved onewhen the next dose is due. Pill crushers and splitters help whenswallowing is difficult., etc.

Incontinence and Toileting Supplies/Aids

Adult protective undergarments, now widely available at drug storesunder brand names like Depends, Attends and Dignity. Mattress andfloor protectors such as a plastic fitted sheet or mattress pads andfloor runners that protect flooring. Others: Antiseptic skin lotions andwipes, portable receptacles, bed commodes, toilet seat modifiers andurinals, raised and adjustable seats, safety rails, grab bars, etc.

To order call the National Association for Continence guide ofproducts for incontinence call (800) 252-6667 or go to: www.nafc.org.

AT for Improving Mobility Gait belts and lif t vests, folding canes, adjustable canes, double-grip

canes and three- and four-pronged canes, foldable walkers,wheelchairs (both manual and electric), etc.

FCA does not recommend ordering wheelchairs or scooters by mail oronline. Purchasing a chair or scooter through a local dealer or supplierwill insure that you have a convenient place to take your product if itneeds to be replaced or repaired. Talk with your local Center forIndependent Living to find out which dealers have a good reputation inyour community.

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Bereavement

Grief is a complex and very individual process

It could start before losing your loved one (Anticipatory Grief)

“First” dates (Holidays, anniversary, Birthday) will always be difficult. Do not ignored them, but also don’texpect family and friends to be aware of such dates

This is a good time to get a support group of you have not done so yet. There are many on-line supportsgroups specific to your kind of loss

Grief is manifested in many ways, emotionally an physically

Try to eat regular meals, exercise and call your friends and family if you need company

We cannot control where or when we grieve. Grief is an uneven process, a roller coaster with no timeline.

We never fully detach from those who have died, but over time most people learn to live with loss.

If you were a caregiver, you might face a double loss: The loss of your loved one and the loss of yourROLE as a caregiver

If you feel overwhelmed and are not making any kind of progress, please consult a physician, you might besuffering from complicated grief (which is a debilitating disorder associated with important negative healthconsequences), major depression or post-traumatic stress disorder.

For more info, you can go to: http://www.samhsa.gov/mentalhealth/anxiety_grief.pdf 

http://www.americanhospice.org/articles-mainmenu-8/working-through-grief-mainmenu-13 

http://hospicefoundation.org/pages/page.asp?page_id=78811 

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Bill of Rights for the Bereaved

Bill of Rights for the Bereaved:

We have the right to express our grieving in our own way.

We have the right to know that grieving is slow, hard work and to move through it at our own pace.

We have the right to express our feelings about grief and to explore them.

We have the right to forgive ourselves for the things we think we “should” have done or “might” have done and

realize that what we did in that moment of time was based on the information at hand and that we did the bestthat we could with the knowledge we had.

We have the right to be ourselves and to recognize our strengths and our limitations.

We have the right to participate actively in our mourning, to remember the past with fond memories and toallow ourselves to enjoy our lives again.

We have the right to move forward and to speak of our pain, whether that makes people uncomfortable or not.

We have the right to go back and forth in our grieving; some days making progress and other days slippingback.

We have a right to express our emotions and to have others bear witness to our story.

We have the right to believe that we will have a whole life again!

From: Gloria Lintermans is the co-author with Marilyn Stolzman, Ph.D. L.M.F.T. of THE HEALING POWER OF GRIEF: The Journey Through Loss to Life and Laughter,

ISBN 1-932783-48-2 and THE HEALING POWER OF LOVE: Transcending the Loss of a Spouse to New Love, ISBN 1-932783- 51-2 (Champion Press, Ltd., March, 2006).

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For more information, you can visit:

http://www.susannataddei.org/ 

http://www.lucreciadelrio.blogspot.com/ 

http://healthystate.org/videos 

RELEASE AND WAIVER OF LIABLILITY: I hereby release the State of Florida, the Board of Governors, the University of South Florida,WUSF Public Broadcasting, and their officers, employees and agents (hereinafter collectively “USF”) from all actions, damages , or claimswhich I or my assigns may have against them which may be incurred as a result of the information presented in this Guide.