I'm confused and don't know what to do

QueSeraSera

Mom was diagnosed about 4 years ago. Since her diagnosis her cognitive and memory abilities have only declined slightly - but her physical condition has progressed to a level so severe that do not understand how her cognition/memory seems to remain unaffected. It makes me question her diagnosis to some degree - but objectively she clearly has dementia. She hasn't been able to handle her medications, cooking, bill paying, household tasks for 4+ years. In the past few years she's went from being able to prep small meals, and do light housekeeping, bathing etc to doing none of these things. The weird thing is that she "can" do them in a sense, she can describe the sequence of things and hold a normal conversation about most anything, but she'll forget it most of the time.

The biggest issue is her physical decline. One of the main reasons I pushed for an evaluation was her weight loss (over about 5 years she went from about 140 lbs to 100 pounds without trying.) The weight loss has continued and it has become harder for her to eat - she says she's not hungry and rarely eats anything other than Ensure shakes. She weighs just 70 lbs. She has severe vision impairment mostly due to plaquenil use for rheumatoid arthritis. She has always been a "night owl" and often sleeps during the day and then stays up very late. Its gotten intensely worse - and now she's sleeping for 18-20 hours a day. She is using adult briefs but manages it on her own, and has occasional bowel incontinence (when she's had diarrhea) and mostly manages the clean up on her own. She's frequently nauseas and very tired.

She has been on hospice and then gained enough weight to be transitioned to palliative care. She has lived at home alone, with family going by every day, but recently I began staying with her when she had covid (she's recovered). Since I started staying with her I see that I'm more able to support her when I'm here so I'll stay here for a while longer, maybe indefinitely.

The palliative care nurse visited yesterday and explained (again - as I have repeatedly) that her body is beginning to shut down from lack of food. The nurse asked if mom was making that decision, because it is OK if she is. Mom said no, she doesn't want to stop eating, she just isn't hungry - and doesn't know how to deal with that. The nurse said, "you have to make a choice then, you need to eat even if you don't feel like it - in order to keep your body alive, or we should start talking about end of life issues."

She told me she wants me to prod her to eat, because she doesn't want to stop eating and give up. It is so hard to be in this position of having to nag her constantly - it feels awful. Even when I prod her the most I can get her to eat is just a few bites a couple of times a day.

She doesn't have swallowing difficulty, dental issues or problems recognizing food. She had an obstructed bowel 2 years ago that made eating a big problem but she recovered from that and began gaining weight again and then just stopped.

I'm sorry this is so long - It just confuses me that her physical condition has deteriorated at such a pace when her cognition and memory seem nearly the same as when she was first diagnosed? Is this just a different way for the dementia to progress?

terei

All parts of the brain are not affected equally. I would assume that the parts of your mom’s brain that control all these issues are more impacted than others.

My mom basically stopped eating at the end of life + I did not encourage her to eat at all. I was assured by everything that I could find on the subject and by hospice that it is not painful + frankly, I did not want to extend my mom’s condition any longer than necessary.

Emily 123

Hello,

This is similar to my mother. She retains some things and other abilities are gone. I noticed she was starting to not eat with much appetite in June, and then in late summer she had covid, which seemed to reduce her appetite further. The covid pushed her into some stage 6 behaviors, and she seemed to have more apathy and loss of executive function, but she's regained some engagement over the last 4 weeks. Like your mother, she doesn't want to NOT eat (when pressed) but she has no appetite, picks at her food, and assumes her appetite has been normal. She won't believe me, but when told that the NP at her facility has been tracking a weight loss it will briefly spur her to eat. They have placed her on Ensure to be served with lunch and dinner. I try to supply her with cookies and crackers in her room, which she enjoys, and they're supposed to make sure she has juice offered twice a day because she won't drink fluids otherwise-this is not a lack of appetite thing, she NEVER would drink fluids outside of meals ever. (Funny aside, I remember being in maybe 6th grade and playing outside all afternoon. At dinner I gulped down all my milk right away because I was thirsty, and was told I wouldn't get anymore because I wasn't 'going to fill up on milk and not eat [my] dinner'--so yes, hydration not a thing with the family...). Short of having an aide sitting at her group table at meals to prompt her to eat, which she would resist, I'm not going to push too hard on the weight loss. If she's not hungry, she's not hungry. The neuropsych will assess her and see if she might need meds added. Her AL is dementia focused, so they tend to keep the residents out of MC longer, but they'll be assessing her over the next few weeks to see if she needs the support of MC for ADL's.

The AD definitely prevents Mom from comprehending what her quality of life has devolved into. She doesn't have the ability to understand that she has a terminal disease, or where she is in that process. She thinks she's living a normal life in AL. She can't appreciate the ramifications of forcing herself to eat more. She used to work in healthcare, and so she was very clear about not wanting to drag things out when quality of life was gone. Being in stage 7 would horrify her, and so I'd would rather focus on helping her manage what she can still manage, and eat what she wants to, but not extend this out longer. Doing that would be more in align with her approach to life back when she was whole.

JDancer

Have physical issues been ruled out? Have you considered medication to increase appetite? I'm not sure if these suggestions are appropriate, I apologize if they aren't

kerstinfromgermany

I actually also believe that it's your mother's decision to either eat - even if she's not hungry - or die. You can simply set a timer to remind her to eat regularly and you don't have to pressure her at all. A short invitation - and then it's her decision. At the end of the day, she understands this causal relationship very well - eating means life. Food that she has always enjoyed is helpful, even if it's the same at every meal. If it's not quite so balanced, then work with food supplements.

I know this sounds very harsh, but ask yourself anyway, if she doesn't want to die, maybe she wants to achieve something else? And it doesn't even have to be conscious. 

I had to care for my mother after a stroke at a relatively young age. She made good progress. Until she suddenly made less and less effort to achieve the best possible therapeutic outcome. What had happened? She had realized that if she became too independent again, we (my family and my sister's family) would have to look after her less, we would visit less often and she would have to do unpleasant things herself again. But she would rather accept a certain reduction in her quality of life than do without us. Was it a conscious decision on her part? I don't know, probably not.

Maybe your attention is very important to your mother, as you wrote that you might stay with her to look after her. Of course it's a kind of mental blackmail, whether consciously or unconsciously makes no difference to you in the end. For you, it means worrying about her life, a guilty conscience because you don't manage to feed her properly, perhaps you neglect your own family and your own well-being out of concern for her. 

If this thought is within the realm of possibility for you, then this is not about eating or not eating. Then you will only resolve this conflict if you really take a close look at your relationship with your mother and sort things out. Is she overstepping your boundaries or are you not setting any boundaries? What was it like before her diagnosis? Has "mental blackmail" always been a tool, or have you always had to take care of mom because she couldn't take care of herself? And even if this now means even more stress, perhaps pain and hurt, it is also your (probably last) opportunity to sort out your mother-daughter relationship and perhaps make it an even more honest and loving one.

Wow, that was a long way around your original question. I hope, even though it may not solve your mother's problem (only she or a feeding tube can do that), that it may still have been helpful to you.

Quilting brings calm

Having a cognitive condition does not protect someone from having serious physical conditions and vice versa. A person’s physical condition can decline as part of the dementia path, or independently of it, or both.

My step-father has serious physical conditions that will take him long before he gets to stage 7. He’s started losing weight because he isn’t hungry, isn’t all that active, and also because he can’t swallow certain things. So far, his weight isn’t yet low for his height. I’m told that when he goes to the dining room, he eats all the meal and sometimes a second helping. However, he sleeps through some meals.

I’ve asked the facility nurse to keep an eye on all of this and to let me know when it’s time to discuss it with his doctor. The truth is that we all know it’s a symptom of his physical conditions getting worse and there’s nothing more to be done for his physical conditions in terms of treatment. COPD has one final outcome, thyroid cancer nodules in the lungs has one final outcome, etc.

Have you asked if any of her medications suppress appetite? Maybe one could be changed to a medication that increases appetite. My mom’s NP in neurology monitors mon for weight gain because her antidepressant is known to cause weight gain. If your mom is not on an antidepressant, adding one might increase her appetite

Iris L.

My mother had cancer, not dementia. Her appetite decreased until she only ate a few spoonfuls of ice cream. She never complained of hunger or pain. We had a good conversation the day before she died. She died during the night in her sleep. I had consulted a dietician because I was concerned about her low eating. She said not to force her.

Iris

JDancer

Kerstinfromgermany- I must disagree. A PWD does not understand that not eating equals death, their brains are broken.

jfkoc

I would question her diagnosis too. Can you compare how it was done with the current process which you can read about online.

Even if the diagnosis seems to ring true I would get her back to her Dr for a workup. It is also possible she has some depression. When did she last see her Dr???

I would also stop talking to her about a choice and have food at the ready for grazing all day long. She will likely gravitate towards sweet things. If so things like pudding and ice cream can be laced with protein powder.

Cheese or peanut butter crackers are also good to have available for her to grab a few.

BTW...have you tasted Ensure?

dancsfo

I agree with @jfkoc I still recommend discussing with a doctor or a dietician, but one thing I learned is that in order to provide calorie and/or protein rich foods, one must often ignore choosing to eat what is considered "healthy" -- such as low-fat, low-sugar or low-salt. At this point, regaining weight is more important, so if there's something she likes, such as cake with buttercream frosting, then go with that and it may be what she wants. Carnation instant breakfast mixed with milk is good (it's also sweet). Ensure powder is good, but is hard to get now, but Carnation instant breakfast is commonly available. You can, however, get Ensure in a bottle.

QueSeraSera

Thank you all for your insight and caring - to answer some of the questions that were brought forward- 

Physical issues have been ruled out to the best of our ability - we have only done video appointments with the physician over the past several months, but she’s been examined by the NP in person and nothing was notable except the weight loss/lack of appetite, along with bloating that the NP said is from the lack of food. 

She is on remeron for depression and to increase appetite. We’ve increased the dose about 6 weeks ago and I haven’t noticed a change except possibly making her sleep more. We’ve eliminated most all of the medications that can suppress appetite or cause nausea, but she does take methotrexate 1x/week and I think it contributes to her lack of appetite. I may ask if we can decrease the dose commensurate with her lower body weight.

In terms of mom being manipulative to get me to stay here - the opposite is more the case. She’s asks me every day when will I go back home and don’t I miss being with my family - before I started staying with her, she nearly always told me not to “make a special trip” when I went to her house. She’s (thankfully) not manipulative in that way at all - I’m grateful for the good relationship we have and that in many ways it hasn’t changed.

As to her diagnosis, she was diagnosed after a neuropsychologist interview and testing (she was given at least a dozen separate memory/cognition tests) she did poorly on most of the tests; She has also had 2 MRIs and brain CT that show “white matter disease” and “mild atrophy”. 

She was seeing a neurologist who didn’t specialize in dementia, and when her primary care doctor left the practice we switched to a geriatrician who she sees for everything - she is no longer seeing the neurologist. 

I’m not thrilled with her doctor and I’m thinking of looking for someone else who specializes in dementia/AD. The latest difficulty with her doctor was when she had labs done and she said everything looked ok, but a few weeks later when her rheumatologist saw her, she asked if mom was on iron because her labs showed her dangerously anemic and a possible candidate for transfusions, so obviously her PCP isn’t looking at her health as closely as I would like. We’ve started her on slow FE and wonder that could be causing some of the nausea. 

She has tended towards sweets for a while now and enjoyed ice cream daily for a long time - but now she won’t eat anything cold - it isn’t a tooth/dental issue, it is that she always feels cold and doesn’t want anything even slightly chilled at all. I’m sure part of this is due to the anemia. Every once in a while she will drink a fast-food milkshake but won’t drink one that I make for her. When she’s having trouble making herself eat, she will drink chocolate Ensure sometimes 2-3 per day, but the doctor said that can be causing stomach issues too. 

Iris L.

In a post menopausal woman who is low in Iron to the point of becoming anemic, a search for source of blood loss is suggested. Blood loss is usually from gastrointestinal bleeding. However, since there is a history of poor appetite the low iron level and anemia could be of dietary origin. There are medical tests to determine the cause. How detailed you want to be will take into consideration her stage of dementia. Improving the anemia can improve her quality of life, by giving her more energy for her daily activities. A diet heavy in milk tends toward anemia. Low thyroid can cause a person to feel cold. Lactose intolerance can cause gastrointestinal isdues.

Iris