Expert: Mary Gordon - 11/18/2008

Question
My mother is 77 and currently in a nursing home. Her doctor says she is in "End Stage" of Alzheimers. I am very confused for two reasons. One being, the social worker at the nursing home told me you cannot identify Alzheimers until post-mortum. The second being, my Mom has almost all of the physical symtoms of end stage with swallowing and talking becoming extremely difficult at this point. Her memory for words and such is gone and she begins a sentence without finishing it. The part I don't understand is she has no problem remembering family members. She's beginning to sleep alot and just seems as if she's in another world when I'm looking into her eyes. I wonder what she's thinking about, or IF she's even thinking. She has begun aspirating her food and has been hospitalized and suctioned, the whole nine yards, usually ending up with peumonia. The doctor did say she had 6 months or less and is elidgeable for Hospice. How long does this end stage last? I am deeply hurt feeling as though she's laying in that bed day after day waiting to die, which to me is suffering. Also, will she just stop talking completely? Do all Alzheimer patients forget who their family members are? Most importantly, I need to know when the time is near so I can bring her home with me so she doesn't leave this world alone. I am not real healthy, having depression and other health problems, but I refuse to let her pass in a nursing home. Please help me with answers. This is the hardest thing Ive ever faced and Ive faced alot.

Answer
Hi Marilyn,  the social worker confused you for no real reason. It is true that the only definitive way to diagnose Alzheimer's is a brain biopsy - rarely done for obvious reasons. However, there are many other ways to come to the conclusion that it is very likely to be AD. The doctor starts by ruling out everything else it can be. Usually, the person is referred to a specialist, such as a neurologist, who does further tests to rule out other possibilities. AD shows some distinctive patterns of brain shrinkage/atrophy on CTs and MRIs. It also tends to have a reasonably predictable pattern of progression, and behaviors.

There are other causes of progressive dementia, but almost all of them end up in the same place your mother is now - terminally ill, with permanent brain damage that will continue to get worse. Whether it was Alzheimer's or one of the many other types really doesn't matter, so don't torture yourself wondering. I know this whole thing is awful. I know you wish this wasn't happening. I also know you wish with all your heart and soul you could help her somehow.

I truly think this is harder on you than her. She's almost like a small baby - I'm not sure she is really aware of what is happening to her. She's passed the point where she can hold thoughts in her mind long enough to be scared or worried. As dreadful as it seems, she will lose her speech if she survives to the end of this disease.

My mother in law stopped making sense 2 years before she died. She would still talk, but it was just garble and nonsense syllables that she would repeat over and over. Very occasionally, she'd come out with a word or two that made sense, but not very often. She verbalized less and less as she got closer to the end.

It is also likely, but heartbreaking, that she won't know who you are. It isn't so much from forgetting. It's from damage to the parts of the brain that let the person recognize people, places and things. Its called agnosia. They get to the point where if you held a comb or a cup in front of them, they wouldn't know what it was, or what it was for. They might be able to see a face and know its a person, but they won't be able to figure out that its someone they know.

The doctor has told you he thinks she has less than 6 months to live, and that she is eligible for hospice care. If I were you, I'd go have a long talk with the hospice workers and find out what they can do for both of you. In some places, hospice care can be done at home, or in a special hospice facility, so you need to know what your options are.

It can be wonderfully supportive and caring - both for the person and for their family. Hospice will do everything possible to keep her comfortable and peaceful - but it does usually mean an end to medical treatment other than comfort measures like painkillers. Palliative care means no trips to emergency, no hospitalizations, no tubes, no oxygen, no resuscitation. It means surrounding her with love while nature takes its course.  Her condition will continue to deteriorate no matter what anyone does, her quality of life will also go down hill. Are you ready for palliative care - ready to let her go when her time comes?

She may live for some time yet, or she may develop another infection and be gone sooner. Its very hard to tell. As I know you know, she is entering into a stage where she will be very frail. She will eat less and less and drink less and less. She will sleep more and become weaker and weaker. She will move less and less and be more and more susceptible to infection. She won't really be aware of her surroundings, or who is with her.  

This won't be like many other diseases where you will have a a good idea of how much time is left - it can go on and on.  Personally, having been through this with my mother in law, I would find it extremely difficult to have the person at home. My mother in law lived almost two years in the last stage. Not only was her physical care very heavy and difficult - requiring a lot of specialized equipment - but I don't think I could have taken the stress of having to watch what was happening 24/7. I'm being completely honest. We loved her very much and my husband was an only child, so you can believe he was very close to his mother. As it was, it was extremely difficult on our family - particularly the last couple of months. However, because she wasn't in our house, we could at least get a break when we were getting to the end of our ropes. We could go home and get some rest, go out and blow off some steam, take a day or two off and get some other family members to visit.
When you talk to the hospice representatives, ask about your options. You may even be able to try having her at home for a while with supports, and see how it goes - and then if its too much, bring her into a hospice facility. Your mom needs you, so you have to be realistic about what you can take. If you end up getting stressed and sick, no one benefits.
Looking after yourself has to be part of your decision process. Your mom would not want you to drive yourself into the dirt trying to cope.
 
Hospice care, even in a facility, usually means that family are allowed to be there whenever they want to be there, or need to be there.  What we found was that there was wonderful care and help from the hospice team. They were there to give spiritual, mental, emotional and physical comfort to both her and us. They were committed to helping us with our grief, and to ensuring that her last days were as gentle as possible.

Even though she was in a facility, when she passed, my husband was sitting by her side, holding her hand. It was quiet and loving. My husband feels very strongly that he did the right thing by her.

Hope this helps. Book an appointment to talk to a worker about hospice options and find out as much as you can about what they can do for you and your mom. I think it will make you feel a bit better just to know what's available when you are ready.

Mary G.