Expert: Mary Gordon - 4/27/2008

Question
My father is 82 years old, likely with late stage Alzheimer's. Until about two months ago he was living in an assisted living facility. He began not eating, and loosing weight.  He also became difficult for the staff to dress, and began on occasion to strike out at them (completely out of character for him as he was always a very gentle man).

He had a fall in which he hit his head quite hard and was hospitalized for about a week. According to the doctors, no permanent damage was done.  From the hospital he went to a rehab unit in a nursing home for about two weeks. When he was there all he wanted to do was sleep, didn't eat, and was very uncooperative concerning rehab.

When he was discharged from the rehab center, the assisted living facility said that they could no longer provide him with adequate care. He no longer had the ability to walk without a fair amount of assistance.

He now is in a nursing home, has become incontinent, and has difficultly supporting himself even if he tries to stand.  Almost the only thing he will eat on his own are sweets, so he has continued to loose weight and become quite weak.

He has difficulty formulating sentences, but he does try to communicate, and he rarely can remember anything that happened more that 5 minutes earlier. He seems to recognize  my siblings and I, but often doesn't understand that we are his children. He sits in his wheelchair with his face buried in the palm of his hand as if he's trying to escape the reality of where he is. Although he has difficulty communicating it, it is clear that he is aware of where he is, or at least realizes that it is someplace that he does not want to be.  However, given the level of care that he requires, there appears to be no other alternative but for the nursing home or for me to move him to my house and arrange for 24 hour care since my wife and I both work. It breaks my heart every time I have to leave him there after a visit.

My question is, is it normal for someone with Alzheimer's to  have the difficulty my father has communicating, the memory problems, and the other issues my father has concerning walking, eating, and incontinence, yet still maintain the cognitive ability to be very unhappy with there surroundings?  I don't know if the nursing home is the best place for him or if we should be doing more to find another alternative.  Thank you.

Answer
Hi Greg,

You don't mention what meds he was on at the time, any concurrent medical problems he may have had, or what the facility did to deal with his eating problems.

As you probably know, loss of appetite is common. Part of it can be due to loss of sense of smell, which in turn affects how food tastes, making it as appetizing as cardboard. They also develop coordination problems manipulating food in their mouths, chewing and swallowing. Many do better with thickened liquids and purrees. Did they try to maximize calories into him with sweet fortified drinks like Ensure and Boost or Gain. They can also get calories into a person by adding fats to foods (i.e. butter or cream), and making sure every bite counts - such as by throwing out some of the conventional rules and letting the person eat high calorie fortified puddings, custards, ice cream - whatever they will take in.
Empty sugary stuff such as juice will kill his appetite for the higher nutrient and calorie food he needs. Because he is spiralling due to weight loss, some concerted effort to stop that would help on every front (i.e. with some of the weakness and sleepiness). Have they got the dietician involved to get a plan in place? Would more small meals and hand feeding help?

He can't really cooperate with rehab because it is likely frightening and uncomfortable, and he can't understand the purpose and goals. Part of what happens with Alzheimer's (and with many other progressive dementia) is a loss of muscular coordination and sense of balance. They also develop perception problems, so they can't tell how far away the floor is. They can also perceive different colored surfaces as being farther away or closer (i.e. dark areas may look like holes). Once they stop walking for any reason at this stage, its next to impossible to get them back on their feet again. My mother in law broke a hip at this stage (she stood up from a chair and without taking a step, went down onto a carpeted floor). Despite a lot of effort, we just weren't able to get her walking again, although in terms of mechanics, it was in theory possible.  Learning to use a walker can't be achieved by a person with no memory - every time they see it, they will have lost the knowledge of what it is for, and how to use it.

My mother in law also became incontinent at this point, and her speech went entirely about six months after the hip break. After that, she would occasionally come out with an intelligible phrase or word, but mostly it was just garbled nonsense syllables.

I know this is just heart breaking, but quite honestly, at this stage, you should be cautious about attributing too much conscious thought to him, or try to interpret his emotions based on who he was and what he would have wanted prior to this horrible illness. It is unlikely that he knows where he is. Even if he was in your home, it is unlikely he would have any idea that is where he was, much less have a specific "feeling" that that place was somehow better than somewhere else. My mother in law, for example, used to want to go home from the Alzheimer's unit she was in prior to the heavy care nursing ward. One day we actually got some answers out of her - her mind had completely erased her long marriage, her marital home, the fact my husband was her son. Where she wanted to go was her girlhood home, where she thought her parents and sisters were waiting for her, even though they were all long dead, and the home sold more than 50 years previously. I've heard it that the desire to go home is more about the wish to return to a time in their lives when they had purpose and meaning, where they felt secure and loved and understood their place in the world.

I think everywhere is stressful because they just are in a confused jumble. A swirl of unfamiliar faces and events, where nothing makes sense, and they can't grasp any part of it. The worst of it - I don't don't think there is anything you can do. Have they tried any antidepressants on him? At this stage, they may have no effect, but its always worth a try if you think any of this is depression in the usual sense of the word.

It is absolutely gut wrenching to watch this and not be able to help your loved one. I know how you feel. We used to visit my mother in law and find other relatives sobbing in the hallway - and many just stopped visiting because seeing her in the later stages was just too much for them. She remained in the last stage for about two years, slowly getting worse and worse,  and less and less responsive. Finally what happened was that no amount of coaxing would get her to eat, and we made a choice for palliative care only.

The only thing that you can hold on to is that the brain damage is in a way merciful, since it is unlikely he can formulate a coherent thought. He may know that you are familiar faces on some level, but can't really grasp who you are, any more than grasp his own situation or where he is.  This is every family's nightmare come true - and I know its painful.

If you brought him home, it wouldn't be  better. If anything, it would be worse, because you and your spouse would be watching this slow horror unfold in front of you, on a 24/7 relentless process, and it would eat at you even more - and you would not be more able to influence the outcome. It is also very hard to care for a person in later Alzheimer's at home because they become so helpless. In a nursing home, they have specialized facilities and equipment that make the care easier (i.e. lifts, special bathing facilities, easy to clean surfaces, special trays etc. ). It is gruelling to try and provide home care for someone who may be totally helpless and unaware of their surroundings, and may stay in this state for an extended period of time. I understand the urge to gather him in and care for him at home, but its not necessarily the best choice for everyone involved (including your spouse), and he may actually get better physical care where they are better equipped to manage his needs.

Have you tried to have a care conference with the nursing facility. You might find it helpful to call one, with your father's doctor, facility staff, and some of your sibs present, and really have a heart to heart with them. If nothing else, you can get some straight up conversation with them about his condition, and what can or can't be done to help him be more comfortable and serene. You can also get a feel for what they can or can't offer, and that would help you to decide if another nursing facility might be the best alternative.

You may also want to talk about end of life issues now, so you have a plan ready - for example, would you want him taken to emergency if he developed a health crisis? Would you want him recuscitated? Would you want tubes, IVs, artificial feeding? Would you want treatments  beyond comfort measures? Have you thought through alternatives for palliative care vs. more active care ? Everyone who loves him has to be comfortable with the plan, and know he is getting the most loving and respectful alternative for his situation - and that the plan is in accordance with what his wishes would have been.  

I hope this helps. I know I've blethered on a lot, but take away what is useful to you. My heart absolutely goes out to you. I've walked in your shoes, and there is absolutely nothing worse than seeing a loved one in later stage Alzheimer's and feeling so powerless to help.

Mary G.
Toronto