Expert: Mary Gordon - 4/27/2008

Question
Hi,
Only one question for now, more to follow, I'm sure.  I suspect my father has LBD but has not been formally diagnosed with it.  Most of the doctors are not interested - they think he has Parkinson's and Alzheimer's.  But I see that as being incorrect.  I believe he's in end stage (where he's beginning to refuse food, refuse drink, etc.)  

Looking for information in the net, I found your reply to another question where you state you elected palliative care when your mother stopped eating.  How long did she live after she stopped eating?  Do you mean she stopped eating and drinking completely or just "wasted away"?  Forgive me if I cause you any painful memories.  I"am having a hard time finding information (more detailed than the blurbs) about just what to expect.  We live in New Mexico and the health care system is fairly good - for some things - but not for the advanced, specialties, you understand.  As a former New Yorker who is used to having the best and the brightest at her fingertips, I'm frustrated!!  Can you offer any guidance?  Thanks for your time.

Answer
Hi Linda,

in later dementia it is common to develop all kinds of problems with eating. A big one is from dysphagia - the loss of muscular coordination required to manipulate food in the mouth, to chew and swallow properly. On top of that, its common to have an impaired sense of smell, which in turn impairs the sense of taste, and can make food unappealing.
With my mother in law, I truly think she reached a point where she no longer felt hunger or thirst, or if she did, she didn't recognize what the sensations were about, or that food or drink would help. She just wasn't interested in it all all at the end - it was as if she had no idea what it was, other than a bother.

Your father may not be at that point. Have they had anyone in to evaluate his eating issues to work on an approach ?  They need to look at what he is eating, how, where and when.
For example, many people with dysphagia can't chew or swallow and have problems with thin liquids. They often have problems with foods with mixed textures like a crunchy cereal with a liquid like milk.  Soft or pureed foods can help, as can thickened liquids - they make products like "Thick It" that can make regular liquids the consistency of pudding.

It can also help to throw out rules about what they give him to eat - if rich puddings and custards are something that he will take in, its worth trying. Boost and Ensure and other fortified drinks can be worth a shot as well. Calories can be added to food by adding butter or cream to sauces etc. I would  avoid juices, since they are essentially sugary drinks with no real nutrition. They can kill appetite. In a person like your dad, you want every bite to count.

With my mother in law, they found she would eat more if she was alone. The dining room was too much for her because of all the noise and confusion. It was distracting to her. She would eat much more if fed in a quiet location, so they set up a card table for her on the main ward, while everyone else trooped off to the dining room.  She did best with small quantities, and a very calm approach. When she would still feed herself, they let her get food into herself any way she wanted. It helped her to have more frequent, smaller meals. Better to get something into her every two hours, rather than next to nothing every four or five.

When she got to the point where she needed prompting and hand feeding her, they put a small amount of food on the spoon and would avoid contact with her teeth (she'd bite the spoon). If the person feeding her pushed down on her tongue with the spoon, that would stop the tongue falling back in her mouth and getting in the way of swallowing. She needed to be given LOTS of time for chewing and swallowing - patience was important. They also had to watch her for chipmunking (keeping food in the mouth instead of swallowing). Its a common cause of choking. They would keep her upright after a meal to make sure she wouldn't choke.  

As you can imagine, there comes a tipping point. My mother in law reached hers about 6 -8 weeks before her death. She had been in Stage 7 AD for almost two years at that point - unable to walk or talk, incontinent, pretty much sleeping all the time and oblivious to her surroundings. As weak and frail as she became, her weight had only been slowly declining.

And then, she stopped opening her mouth. If you brought a spoon or a straw to her mouth, she would push it away, just not open up, or let it sit at her lips without any reaction. We upped the efforts on every front, and despite best efforts and coaxing and every strategy we could think of, she took in less and less. The decline was very rapid after that point.  

She had had a "Do Not Rescusitate" Order on her for some time by that point and we had also told the doctors that if she developed a life threatening illness, they should only treat it for comfort (i.e. painkillers). We did not want her taken off to the hospital for all kinds of poking and prodding, when there was no hope of a recovery to a reasonable quality of life.
I don't suppose we had seriously considered that starvation/dehydration would ultimately be the crisis - I guess we figured some other health issue would carry her off, whether an infection, or some organ failure. The staff were actually quite relieved that we did not want IVs and feeding tubes.

They made her very comfortable, and she did not seem to be in any distress or pain at all. They kept offering her drink and she just took in nothing. They kept her mouth moist with glycerine wipes.

She shut down, and just drifted away. That is not to say it wasn't hard on US because it did take those 6 or 8 weeks, and that was gruelling for my husband (an only child). When he looks back on it, he regrets that she ever had to go through the misery of Alzheimer's in what should have been her "golden" years, but he feels very strongly he did the right thing for her.  We have nothing but positive views on how she was treated, and how our family was supported by the palliative team. .

If you do any reading on people who die after they stop eating, you will find that our experience is common. They sleep more and more, finally fall into a coma, and just drift off. It was not frightening in any way, and she seemed entirely serene. She died with my husband holding her hand, although I can't say that she knew he was there. It mattered to him though that he was.

I don't know if this helps. I know this is hard. I'm thinking of you and your dad. You sound like a wonderful daughter. So many families have a very hard time contemplating end of life issues. We always think we should be fighting death, and its very strange to reach a point where you feel that the most loving thing to do is just sit beside them and let death come.  I'm sure you've had some of the same experience - my mother in law was gone from us in almost every way that mattered long before her heart stopped. Death no longer seemed like the worst thing that could happen. We were actually relieved that she was finally at peace.

Hang in there. He knows how much you care.

Mary G.