Expert: Mary Gordon - 8/26/2006

Question
My wife first showed symptoms of AD 10 years ago. Since then she has progressed through every stage (at home and with my care). Now we find ourselves at journey's end (she is 80 and I 78). My question relates to how aggressive I should be in getting her to eat. She drinks Ensure with a little encouragement, but getting her to take even soft food requires much time and patience. I do not mind spending an hour or more feeding her at mealtime, but it taxes her. Can you give me some pointers on when it is time to feel that "enough is enough"? My only concern is for her. I could go on for hours if I thought it productive. I have read your comments on other matters related to AD. You are completely "on target" as related to my experience. Thank you.  

Answer
I really feel for you - this is so difficult, and I know how hard you are trying. You know she is likely to eat less and less with time, and that weight loss is what finally tips the balance for many people in later stage AD - once they become very thin, they are not only frail, but weak, and that makes them more susceptible to infections, and a general spiral downwards. That can be a very difficult thing to stand back from - i.e. when you get to the point where the tide is going out, promise me you'll look into hospice, so you aren't carrying this alone.

Before you admit defeat on the food front at this stage (my sense is that things are not quite at that point yet), my advice would be to make every single bite count, and try for more small meals (i.e. six smaller ones vs. three large ones). If she will eat only a limited amount, go for very high calorie and high nutrient foods. Don't think about regular "dinner menu" type foods. Nothing says she has to eat traditional foods like two vegetables and some meat if they have limited calorie content and make her tired from eating them. So think sideways about food.

You can add calories by adding cream, butter, or oil to foods. Put butter and gravy on whatever you can. Avocado is high calorie and very soft and bland, another idea for things that can be blended in with other foods. You can beef up protein by adding dry skim milk powder (or purchased protein powder) to just about anything. Tofu is a great source of protein that can be hidden. Cheese (including creamed cottage cheese) and peanut butter can be snuck into many dishes which gives you extra protein and fats, as can pureed meats. It doesn't have to appeal to you, but just be something you can get into her - so be creative. If she does have a sweet tooth, that certainly can be exploited to advantage with ice cream, puddings, cheese cake. Fruit smoothies are another good idea that can be doctored up invisibly with extra fats, protein etc.

Make sure the food is not too bland - does she respond to any particular flavors or spices? If you can, exploit that. Like I said, it doesn't have to be something you would serve to guests or eat yourself, but if she'll eat it, who cares what it looks like.  I've dealt with family members with cancer who had lost their appetites and we made some pretty creative concoctions to get them to eat (egg nogs with heavy cream and vitamins added in).

The general advice is to focus on the highest calorie foods first at any meal, so she doesn't fill up or get too tired eating lower density foods. For that reason, go for high protein, lower sugar as the first item so her appetite isn't turned off prematurely (i.e. the scrambled eggs made with cream or the meat and tofu concoction before the pudding).

Use the ensure as a snack between meals. Companies like Ensure and Boost also make puddings, for example, that might be something to try to get calories into her. Here is a sample of the idea
http://www.novartisnutrition.com/ca/productDetail?id=853

I am concerned about you as well.  What is your plan as things progress and the care gets heavier and more and more time consuming? I don't want to read too much into your query, but you do sound very tired.

I hope sincerely you have access to supports and that you can get some daily help with her care in your home - whether that be hired assistance, or family, friends, neighbours, your church, community volunteers, social agencies. I know caregivers are often very reluctant to ask for help, but this is the rainy day you planned for all your adult life, so stick your hand up - I'm willing to bet you there are caring people out there who can pitch in.

After all, if you become unwell from the strain, it won't help either of you - your wife needs you well, so looking after yourself is part of looking after her.  I know you know this is a marathon, not a foot race. Are you able to get rest and some time for yourself in all of this? Do you ever get a break? Could you get someone to come in to feed her at least some of her meals - not just to give yourself some respite, but to see if she'll respond to any different styles of coaxing. You never know, sometimes someone else on the end of the spoon works the magic.

Thinking of you, and in awe of your courage, your fortitude and your sense of love and duty.

Mary