Mom not eating as much...ethical dilemma

eastcoker

My precious mother turned 75 today. She was diagnosed with Alzheimer's in 2013, but she recorded symptoms in her journals as far back as 2007.

While Mom has retained her pleasant demeanor this entire time, she does seem to be turning a corner.

Her face doesn't light up as brightly now when she sees me. I seem to be the last family member she recognizes, although I think she believes I am her husband.

She is more confused about everyday things now. I took her shoe shopping which was a confusing mess for her, whereas last year it would have been easy enough.

As best I can tell, the only things which bring her pleasure now are seeing beauty in nature, singing familiar songs, seeing young children, and going on little day trips with me (during which we do most of the other things she likes). Everything else she seems only to tolerate with her saintly patience and pleasant demeanor, though I have seen her rolling her eyes now and again at the more patronizing nursing staff.

Meanwhile, she has lost 11 pounds in three months, which is a lot for her because she's petite and thin.

Mom long ago indicated she doesn't want heroic means taken to preserve her life.

Given that, and the fact that I have durable POA, my impulse is to instruct the memory care facility only to prioritize hydration. Certainly I will ask they try something more concentrated and nutritious such as shakes, but if Mom doesn't want to eat, I don't want her being badgered into it.

Has anyone been in this situation? Do you see any flaws or gaps in my thinking?

Nerdyblond

Hi eastcoker,

 It sounds like she knows her time is drawing near, and you sound like you're very close with her!!

For the record...I am very relieved your mom is the kind of person who sees nothing but beauty and light. Not too many people are that lucky. I am not that lucky, surer than taxes.

I believe she sees you as her husband because when people start forgetting like that, they are scrambling to try to remember, so they use some means of association to trigger any memory. So she's associating you with the closeness she felt towards someone like her husband...maybe? Don't take it personally if she does not seem as excited to see you. She might be just scared.

I believe you are instinctively doing the right thing. God bless!

M1

no gaps in your thinking at all.  It comes down to a simple question: is she comfortable?  If so, nothing to worry about.  If she's in distress, what will bring comfort?  I wouldn't worry about her intake a bit.  Good luck to you....

MN Chickadee

Seems logical to me not to force her to eat. My mother was the same in her wishes. There definitely comes a point in later stage Alz where no matter how hard caregivers try it is extremely hard to stay on top of hydration and getting them to eat. A couple random thoughts: 

My mother got to a point where she still enjoyed eating (certain things anyway) but struggled with the act of eating. She would sit down at the table and look confused by utensils and pieces of food. She did best if family or an aide sat with her and encouraged and supervised eating. This would probably have to be in her care plan. Is it possible your mother needs more prompting, assistance putting the cup to her mouth, cutting food small etc. than she is currently receiving?

Do they have her drinking out of a regular cup, a straw, or special adaptive cup? Each serves its purpose at various stages. You might ask if they can try a few things to see if hydration improves. We switched to a straw cup for a while and they added some hydration instructions to mom's care plan and it did help for a while. Eventually her understanding to take a drink and swallow diminished and putting it to her mouth did nothing. But trying to stay on top of hydration is a key piece to fighting off other issues such as UTI and illness, so it's worth trying. 

There came a point in my mother's disease where it seemed digestion was affected. Even when she was still a good eater she was slowly losing weight. The workings of the gut and absorbing of nutrients was even affected by the dementia, or so it seemed anyway. Months later her blood work also showed something that suggested she wasn't properly processing the protein in food. 

You may indeed need to try ensure, smoothies, purees or some other type of nutrition. Some people at mom's facility were eating baby food type purees but it didn't look fun. The staff spoon fed them. They never forced it, just offered it to the mouth. Many people only took a few bites but it doesn't take much to keep on going when they aren't moving around.  My mother didn't linger in that end stage long. My thought is that eating is a pleasure of life, and when a person's mind and body are so far gone they are prevented from enjoying it or even being able to physically perform it, there isn't much to be done. It sounds like she has made her wishes clear and you are bravely honoring that, hard as it is to watch. If it doesn't turn around, and given her weight loss, she may qualify for hospice now or very soon. You may want to have her evaluated, and if not accepted now then stay on their radar and ask them to track her. That usually means they check in every couple weeks to see if she qualifies or if anything has changed.  They come into facilities and can be very helpful at this stage and are an added level of service to her and the rest of the family. 

May flowers

Is the MC telling you she is refusing to eat? If my FIL was refusing to eat, we would just do what you are saying and focus on pushing hydration.

We thought my FIL was at this point last fall. We later learned that FIL wants to eat but gets distracted and has to be reminded to take another bite every few minutes. MC caregivers should be trained to be aware of that. However, I know this was not happening in a facility he had to move to late last year, and he lost 10 pounds in a few months. We thought he was refusing to eat, but when we visited he talked about being hungry. Since being back here in January, he has gained 15 lbs and eats like there is no tomorrow.

Bost

Has she said anything about her weight loss?  Does she have gut pain?  Are her teeth hurting? When she did her own shopping, what kind of sweets did she purchase?  Is fruit being provided?  Even if she doesn't want to eat, a meal should always be presented.  Meals are not heroic, they are considered basic. Even if she doesn't want to eat, a fragrant, warm, attractive meal should be presented near her 3 times per day so that on some occasions when she is in the mood, she can partake.  That's not at all forced feeding.  And it's not heroic.  It's simply basic humanity.  Those liquid meals, from my experience, are usually candy bars in a bottle with a crushed up vitamin, really.  If I was eating a lot of those, I would be put off food, too.  Liquid meal replacements are a huge weight-loss dieting strategy among women trying to lose weight.  While your mother doesn't want heroic measures to save her life, she might be open to some high calorie foods being around.  It's easy to add a teaspoon of mild-tasting olive oil or even a few olives or marinated artichoke hearts into almost any meal without affecting the taste. How about leaving the liquid food around as an extra, not as a meal substitute  Best wishes finding a balance for your mother's intake.

Bost

I joined this forum because it was the only one I could find that welcomed professional caregivers like me.  I guess I'll use the word LO instead of client though, since most people here are family of their patient.  I had a LO who needed a caregiver for meal preparation and walks around the long block for exercise.  When we went to the store for meal ingredients, I had a problem.  She didn't wait to enter the parking lot with me and the heavy grocery cart I was pushing.  She raced ahead, not even looking as she crossed the parking lot.  With the cart, I could not keep up with her.  I was worried she might get hit by a car.  I wonder what other caregivers would do in this situation?  When I asked her to wait, she was sarcastically dismissive of any concern for her welfare.  After seeing my concern dismissed, later before we got home I made a special point to request that she stay with me when we leave the store.  Her face looked angry then.  She dropped me as a caregiver that day, probably because she felt I over-reacted.  I would like to know good ways to handle this in case it happens with another LO sometimes.  I was thinking of asking the store for help out, so an employee can manage the cart.  But caregivers are expected to work hard?

eastcoker

Thank you all for the comforting and practical advice.

I will definitely ensure they are prompting her correctly, and I will be trying high fat things like ice cream shakes, which she likes.

Recently I was able to get her to drink a whole glass of cranberry juice simply by prompting her a few times. I do believe the repeated prompting seems to now be a general need for her, which might explain why taking her shoe shopping was so hard. I had to keep telling her to sit down, give me this foot, etc.

I hope I can do right by her. Sometimes I just wish I could look her in the face and tell her she doesn't need to live like this, that she can choose to stop eating and join her mother in a better place.

May flowers

Some things we give my FIL between meals that he likes are things he can hold and eat like nature valley protein bars - they have peanuts, almonds, and chocolate, he would eat five at one sitting if we allowed, but we switch it up. He also likes the uncrustables sandwiches - they have PBJ and also meat and cheese ones, he loves those. 

For some reason, if it is food he can hold, he stays on task but if it is a spoon and plate he has to be reminded. For prompting, all I do is say, you still have some food, and he says, “I do?” and starts eating again. If he says he’s not hungry, I don’t push it. I just take the plate away and offer again later.

Jo C.

You have received some good input from other Members which may well be helpful.   I would like to add one more suggestion to the group.

It is common for our Loved Ones (LOs) to develop "silent" urinary tract infections.  These UTIs are called, "silent," because there are no overt signs of infection such as pain or burning, BUT in a person with dementia, there will often be changes in behaviors to the negative side of the ledger.  Sometimes those changes will be a bit subtle, other times they can be quite significant.  This is something that may be helpful to have checked.

If there is a UTI, once treated, some or all of the negatives may adjust themselves; it is well worth having it looked into.

No matter what, your mother is blessed to have your loving care and advocacy.

Let us know how she is doing, and so hope that some good results will be found in whatever is best for your mother.

J.

mommyandme (m&m)

I’m sorry for these struggles.   

Have you considered a hospice evaluation to assure her comfort care if needed? 

eastcoker

Jo C. wrote:

You have received some good input from other Members which may well be helpful.   I would like to add one more suggestion to the group.

It is common for our Loved Ones (LOs) to develop "silent" urinary tract infections.  These UTIs are called, "silent," because there are no overt signs of infection such as pain or burning, BUT in a person with dementia, there will often be changes in behaviors to the negative side of the ledger.  Sometimes those changes will be a bit subtle, other times they can be quite significant.  This is something that may be helpful to have checked.

If there is a UTI, once treated, some or all of the negatives may adjust themselves; it is well worth having it looked into.

No matter what, your mother is blessed to have your loving care and advocacy.

Let us know how she is doing, and so hope that some good results will be found in whatever is best for your mother.

J.

Interesting you should mention UTI. They did a UA on her last week. She had TEN high levels and one Abnormal, but no evidence of bacteria, so they didn't treat it, but that decision was made by a nurse practitioner, so I am going to ask her GP for a second opinion.