Hospice and Alzheimer's Disease: One Family's Story

by Edyth Ann Knox
More About Edyth…

I was the caregiver for my mother-in-law, Milly, from 1989 until July 1, 2000. I cared for her 24 hours a day, 7 days a week at home since 1992, until she took her last breath in her own bed in her own room. I was aided in her care for most the time only by my husband and two children. It was the most memorable time in the life of our family and one that was filled with riches that could be found nowhere else.

Now, don't get me wrong: life while caring for Milly was not all funs and games. It was far from that. It was filled with frustration, agitation and feelings of helplessness and guilt. There were not a lot of little cooing voices saying "I love you". There were times where all day long I would hear, "I am going to kill you" or "They want to kill my baby" or "He will kill us." I think those words will be forever implanted into my brain.

Yes, there were plenty of hugs and kisses and there were "I love yous." Mostly though it was a struggle and the family did adjust and deal with it well. During those eight years there was very little assistance to be found for caring for Milly in the home. The only time she qualified for assistance was the last few months when she qualified for hospice care.

Hospice is a wonderful service that provides a team support/care for those in the terminal stages of a terminal illness/disease. They provide this support in the home, in a care facility or in a special hospice facility. The hospice team provides support and assistance in the physical care, emotional needs and the spiritual needs of not just the Loved One but the caregiver, family and close friends of the Loved One. Their services are often flexible to try to help fill the individual needs of the Loved One and the caregiver.

Calling Hospice to qualify a Loved One with Alzheimer's Disease or related dementia can be a very difficult step for a caregiver to take. Hospice takes those that are terminally ill only in the very end stages of their disease. Many times for a caregiver to admit to herself that their Loved One is on the final leg of the journey, can be scary. Many caregivers feel that to admit the last few months are near is like giving up even though they know that death is the end result of the disease. Also many caregivers do not realize that they can use hospice for end stage Alzheimer’s Disease and other related dementias, not just cancer or AIDS.

Qualifying For Hospice

Though most hospices belong to the National Hospice and Palliative Care Organization (http://www.nho.org) it is important to remember that each hospice is it's own entity and runs itself accordingly. Hospices can be funded in many ways. Most commonly, Medicare covers the cost of the care they provide. But some hospices also receive donations. The budgets of hospices can vary also from area to area. Many Hospices in 1998 had a budget under $500,000 while only 1% had budgets over $10 million, according to the National Hospice and Palliative Care Organization.

At one time hospice use to say that to qualify a Loved One for hospice that you only needed a doctor to say that the loved one only had six months to live. The problem with Alzheimer’s Disease is that it is impossible to say how long someone has to live: The disease goes at different rates for each person and there are too many factors involved to predict how long a Loved One has to live with the disease. Medicare also wanted to qualify the "Six Month Rule" more with those with Alzheimer's and related diseases. The general hope was that new guidelines would also make it easier to qualify those in the end stages of Alzheimer's Disease. Doctors were also uncomfortable saying that a person with Alzheimer's or related diseases had only X amount of time to live and the hopes were that with a new set of guidelines doctors would recommend hospice care more often for those in the end stages of Alzheimer’s Disease.

Hospice still quotes the Six Month Rule but they use the new guidelines to qualify a Loved One to be covered by Medicare. Many hospices would not have the financial resources to care for those in end stage Alzheimer’s Disease without Medicare coverage. The general guidelines are that the Loved One be in Stage 7 of the disease (according to Reisenberg’s seven stage scale) and have some form of complication, such as:

  • Unable to ambulate without assistance;
  • Unable to dress without assistance;
  • Unable to bathe properly;
  • Urinary and fecal incontinence; and
  • Unable to speak or communicate meaningfully.

The complications that may be present at the time of qualification may be:

  • Aspiration pneumonia;
  • Signs of a recent stroke;
  • Upper urinary tract infections;
  • Bed Sores or Decubitus ulcers (multiple, stage 3-4);
  • Recurrent fever after antibiotics; and/or
  • Difficulty in swallowing/refusing food.

However, not all hospices follow these guidelines to the letter. Many times it depends on how large their budget is. Some hospices feel that if they accept one or two end stage Loved Ones that do not qualify for Medicare coverage they can still afford to cover the cost of the care. Many hospices though do not have the spare money in their budget and need Medicare to cover the cost of the care of our Loved Ones. Even though if your Loved One is in an earlier stage but has difficulty swallowing, has one of the complications and/or has had a sever weight lost they may still qualify for hospice care.

Opening Your Home to Hospice

Hospice will provide a nurse to check on the Loved One on a regular basis, generally once a week. They will also provide Certified Nursing Assistants (CNAs) to do bathing and personal care. You can arrange to have your Loved One bathed up to 7 days a week, although with Milly I choose to have someone come in three times a week to bath her. They also have pastors who you can ask to come out to visit to help give spiritual support. Many caregivers by the end stage are overly stressed and hospice also has social workers who can help you through the very emotional time of the end stage. There are also Grief Support Groups that you may go to, that can provided a lot of support and comfort from those going through the same thing as you.

I as well as others have trouble at times thinking of letting someone else doing something that I had been doing as relief and assistance. That is true especially in having a CNA coming in to bathe your Loved One. I had been bathing Milly just fine for 8 years and letting someone else do that task was in all honesty for hard for me to do. It was also hard to realize that such a simple thing actually was going to help me or provide any relief. It however was one less task that I had to do for Milly and the CNA coming in also provided someone to talk to.

The CNA also brings in supplies such as bathing supplies, chucks and diapers. They check the Loved One each visit and report any problems the caregiver may not notice to the nurse. The CNAs from hospice are generally well-trained and have good experience. They are always very happy to show the caregiver tricks and methods of caring for someone in the stage that your Loved One is. They can also offer reassurance to the caregiver that they are doing what is right for the Loved One.

My experience with the nurse from hospice was wonderful. She came in each week and took vitals and asked about Milly's previous week making notes of any signs of decline. She always treated me with respect and never ever did she talk down to me. She was very helpful in answering questions and very supportive when it came to making the hard decisions, though the decision itself was always left up to me especially on the really hard issues. The information she provided really helped to make the decisions and she always supported me in every decision I made, never expressing that she would have done differently.

The hospice nurse will also help assess and acquire and medical equipment and supplies that you would need for the care and comfort of your Loved Ones. They will help provide hospital beds, wheelchairs, eggshells/air mattresses/gel mattress for the bed/wheelchair that you will need for the comfort and possible bed sores that your Loved One may have. The nurse will talk with the doctors for you and help arrange for medication. What is even better is that hospice will take care of the insurance and coverage of these items and they will do the PAPERWORK for you. You do not have to worry about dealing with insurance, worry about whether they will cover the cost or fill out the mountain of paperwork.

I really urge everyone to take advantage of the pastoral staff as well as the social workers. I found these people of great value. I particularly enjoyed the pastor. It was the first time I had a pastor visit that did not condemn or judge and genially understand the hardships and situations of caring for a Loved family member who had Alzheimer’s Disease. The social worker was also cheerful and supportive. She seemed to be concerned about my emotional state as well as the emotional state of the rest of the family, especially my two teenaged children.

When Your Loved One Lives Longer Than Expected

Once your Loved One qualifies for hospice they can receive hospice care for two 90 day periods. After the two 90 day periods, they can requalify every 60 days for an unlimited period of time. I found the requalifying (especially the frequency with which it occurred) the most stressful. In order for your Loved One to requalify for hospice and for Medicare to cover the cost you must show that the Loved One has declined since the last evaluation of hospice. This can be very difficult to do with those with Alzheimer’s Disease and related dementias.

To me the requalification process brought great stress. The fear that hospice would drop Milly from their program was intense. In the eight years that I cared for Milly at home, hospice was the first real help that Milly, my family and I had received. There was great comfort in having the hospice team to come in, the nurse was invaluable to me and having companionship in Milly's care meant I was no longer alone in her care. Having the nurse to discuss my choices with Milly's care was wonderful. She would help me look at all angles and the results of them, she helped to keep my feet on the ground and able to look at myself in the mirror every day.

Communication with the nurse about the requalification is important. The nurse is at bat for you and the one presenting your case to requalify. In our case the nurse fought hard to keep Milly on with hospice and she was able to present Milly's case very well. There most useful way you can help the hospice nurse to present your case is to document (write down!) all changes and difficulties that your Loved One has. It is a good idea to ask the nurse what kind of things they are looking for to show decline. I saw the decline of Milly but much of what I saw was subtle and difficult to demonstrate. Things that they will look for in showing decline are:

  • Changes in blood pressure or heart rate;
  • Any wheezing and sounds of fluids in the lungs;
  • Any difficulty in swallowing, refusals to eat, signs of aspiration or severe weight lose.
  • Charting all these on a calendar is extremely helpful and will go a long way in requalifying.

In Milly's case when it looked like we may not have been able to requalify her for hospice we weighed her. I held Milly in my arms and got on the scale with her, then I weighed myself. A little math showed Milly's weight. Then at the time of requalification we reweighed her. When she started hospice she weighed around 90 pounds, the last time we weighed her she weighed 58 pounds. To be honest I was a little hesitant to weigh her because I knew that it could also back fire on me. I knew that Alzheimer’s Disease was a very unpredictable disease and a Loved One could go through a bad period and lose weight then go through a window of clarity or a good spell, eating could momentarily improve and they could actually show no loss or even in rare cases an incline in weight. Though it is through her weight and charting it that was the biggest factor in keeping hospice.

Hospice may not be perfect and Medicare can make it more complicated but hospice is worth having in the End Stage. The thing is that no one should ever have to go through the last months/days alone. So many times a caregiver feels as if they went through much of the care by themselves. For a caregiver to go through the very end alone is not necessary.

Internet Resources:
National Hospice and Palliative Care Organization
Official Medicare Website

ElderCare Online Resources:
Transitions & Spirituality Channel
Death, Dying and Late-Stage Alzheimer's Disease Hot Topic
Medicare and Hospice Care (Article)

Book Reviews:
Hard Choices for Loving People by Hank Dunn
Handbook for Mortals by Joanne Lynn, M.D.
My Mother's Voice by Sally Callahan

Professional Resources (Not Online):

Legal Aspects of the Dementias. Dickens, Bernard. Lancet (March 29, 1997), v. 349 (9056), pp. 948-50

American Geriatrics Society Position Papers and Practice Guidelines

Fairhill Guidelines on Ethics of the Care of People With Alzheimer’s Disease: A Clinical Summary. Post, Stephen; Whitehouse, Peter. Journal of the American Geriatrics Society (December 1995), v. 43 (12), pp. 1423-29

The Care of Dying Patients: A Position Statement from the American Geriatrics Society. AGS Ethics Committee. Journal of the American Geriatrics Society (May 1995), v. 43 (5), pp. 577-78

Good Care of Dying Patients: The Alternative to Physician-Assisted Suicide and Euthanasia. Sachs, Greg; Ahronheim, Judith; Rhymes, Jill; et al. Journal of the American Geriatrics Society (May 1995), v. 43 (5), pp. 553-62


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