Are we nearing the end?

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Are we nearing the end?

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My mother, 87, with Parkinsons and moderate dementia, has been in a NH just over a year and increasingly refuses to eat. She'll go for breakfast as she likes oatmeal, refuses lunch and I suspect is now refusing dinner as well. Yesterday I picked up things she had asked for which included two types of cookies and assorted chocolate bars. I used to take her a little fruit but, in the last couple of months (since having a stroke) she won't eat it and only wants cookies and chocolate. I didn't go to her room but left the shopping at the desk as I have a cold.

I called her just before dinner time (when I knew she'd be awake as the staff try to get her to go eat) and she told me she wasn't going to dinner. She also said the last time she was weighed she was 80lb. As you can imagine, she's skin and bone and due to taking blood thinners (has for many years) is covered in bruises. After her stroke she was returned from hospital to the NH deemed palliative and sleeps most of the time.

Is her body starting to shut down? Are we nearing the end? Deep down I think I know the answer to my question.

End of Life

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Wise words skinonna very wise words

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First of all, I would like to say I respect the sanctity of human life. Secondly, dying is the price we pay for having the opportunity to live. Thirdly, we need to be careful that we are not prolonging death instead of prolonging life. It is for the individual and family to decide. Forcing food on someone whose body is shutting down may not be the best thing to do. To keep them free from pain and assuring them they are loved may be more advantageous. Hospice may be able to help you.

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I just re-read your post, you did state that she has Parkinson's, ask the doctor for a swallow test, my dad has Parkinson's and stop eating, or drinking much at at all, we had the swallow test done and they saw that different textures of food were impossible to swallow, even his water had to have a mixture added to it, so he could swallow. He also tried to stop going down to the dinning room, now we all, that includes the facility has adjusted his diet and food textures and he is starting to eat and drink a little more, still skin and bones. Hope this helps.

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Why is everyone focusing on Ensure, it does not have enough protein to substance anyone and it taste bad. Try real protein drinks, I personally use EAS Multiplex I buy at Walmart. that has only 3 grams of sugar and 20 grams of protein. Costco has an excellent protein drink that has 0 sugar and 30 grams of protein. If she is not eating, she is missing much needed vitamins like D, B, Calcium. Add you can blend some fruit or ice cream into the protein shakes. NH will not be so hands on, I was getting foggy and having some memory loss, and after a blood test found out I needed to add Magnesium and vitamin B to day, and wow, it helped a lot. Again, were is her doctor? The ER doctor does not know her health history. . Have a blood test done, there may be some kind of chemical imbalance, she may be lacking vitamins or minerals. Her wanting sugar may be a medical issue, again, were is the doctor, you should not be trying to figure this all, and the NH can only do so much, also, people with OCD, ADD, other Neurological issue should probley be seeing a Neurologist. There are medical test that will let you know what is going on. Once, my family and I got involved in my dad's medical issues, we got his Parkinson's diagnosed, found out he had Basal Cell cancer, had it removed, found out he has Arial Fib, got medicines adjusted. We found out that he had an old brain bleed were he had a fall he did not remember. The blood work or labs uncovered a great amount of issues we did not know he had. Once we got his medications adjusted, we got the nutrition from the daily protein shake in his system, got a daily multi-vitiam with iron into his system, his memory seemed stronger, he has more energy, I think I made a point, she is having more than just cravings. You said she has increasing dementia, what stage did the doctor say she was at? Maybe, the lack of B-6 and B-12, can make you have memory lost. They have facilities that are set up to work with dementia, if the doctor has stated that she has dementia, he can write medical orders stating the stage of dementia and that will help you find the facility that can manage the stage of dementia. Some facilities do complete lock-down, to other things that a regular NH will not be qualified to offer.

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I agree with Twenaton. Ensure is really nasty. I did manage to get one down when I mixed it with coco powder. Now Boost is a different story that is really pleasant. I like the chocolate best, it tastes the same as chocolate milk but strawberry is OK too. Don't like the vanilla. I have had exactly the same experience as Frenchmadeline after major illness and surgery. Eating was like trying to swallow rocks so I existed on Yogurt and turkey sandwiches for a long time. I had zero interest in food or the desire to cook it. Once in hospital they sent an aide to encourage me. Well if they had sent the cute ex marine they might have had better luck. But this guy just hovered and as soon as I reached for anything he was right there to take the top off. In the end I just told him I hadn't lost the use of my hands. You really crave the strangest things when you are in that zone

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Have you guys drank ensure? The stuff is nasty, I wouldn't drink it on any basis as any form of food??? What is it with nursing homes?? People are suppose to die on their own, not be made/forced to die?? When did all of this all take place??

Candy and cookies are not ideal choices for people with dementia, they bring on the problem of the mind scattering to much at least that is what we notice here, we use that stuff only if she eats and has regular food, so far it has worked, she has been home now for 1 and a half years, she has an afternoon treat and one after dinner, they are usually home made to be in charge of the ingredients.

A person starving themselves to eat chocolate and goodies does not do anything for their muscles, and would be prone to falling, but it us a proven fact, that people often crave what they shouldn't eat, we do limit her intake...so far...is she any worse in the year and a half??? OCD's are really kicking in and of course they do not make sense to us or her...

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Thank you for all the thoughts and suggestions. Cooking for her won't work. During the years I cared for her I'd spend hours cooking and creating things to tempt her but she'd only pick at it, if I was lucky, though she would take a protein shake each day. In the NH she dines with 3 other residents who have shared the table for months and she's comfortable with them but she just has no desire to eat. If the staff didn't insist she go to the dining room she'd just stay in bed 24/7 and meals are only delivered to a room if a person is quarantined due to illness. Due to increasing dementia, having a talk with her will get me nowhere and I often have to check with staff to see if something she says is real or imaginary - yesterday's disaster was a light bulb had gone out and the NH didn't have any light bulbs. I deal with her as one would deal with a petulant stubborn child in the hopes that some of what I say might sink in, such as you must not try to get out of bed by yourself or you will hurt yourself badly - did that Christmas night, taken to hospital for stitches but thankfully nothing broken. According to the doctor there is nothing more that anyone can do and we go day by day.

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Are you nearing the end? I can't answer that because I have not seen your mother.
As we age our taste buds do alter and we crave sweet things. can you add peanut butter to the cookies? or even eggs. Food needs to be of a soft texture and moist without things like nuts in them. Is she a real vegan? I assume not so make your own mayo for the salads with real eggs and her favorite seasonings.
if she appears to be able to swallow soft foods and salads I would not put her through a barium swallow. I have just done that and managed to inhale some. I am not going back for the food challenges. I know what I can swallow! The staff should be checking on her bowel habits if she can't stand she must be getting help. She needs a stool softener regularily start with half a tab. I doubt she could manage Metamucil because of the volume. Plenty of apple juice helps too. Everyone says make drinks cold but sometimes room temperature is easier to swallow. By all means have a hospice consult and consider a higher level of care and talk to mom to see how she feels about things herself and follow her wishes

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@Ashlynne: I don't know why you would think your Mother is "shutting down." It sounds to me like she wants to eat what she wants to eat (cookies and chocolate) and she will also drink what she wants (apple juice) and where she wants. Because she doesn't want the food the NH has to offer she doesn't feel she needs to go sit in the dining room, she may find the room and the other diners annoying or depressing to her. She'd like to eat alone but what happens of course, is she has her space invaded (she has never been a joiner!) by a staff person whose job it is is to make her eat the food she wants to avoid. You have said that 1) she is a vegetarian and that 2) you used to take her fruit. She also might find the smells of the dining room peculiar and/or off putting so all things being equal, she has decided to just skip the effort/experience entirely. So then as her daughter I would STOP the staff from making your Mother appear in the dining room and insisting that she sit at a table (alone?) just to drink her juice. This could be very humiliating for your Mother. This alone could create stress-related eating problems. I think perhaps it would be a good thing for you to begin once again taking her fruit, interesting colorful tasty fruit...maybe even something like chocolate dipped strawberries which you know would appeal to her. After surgery for a broken hip all I wanted for many months was cool and tasty liquid yogurt (Frusion) and in only one flavor, peach. (And I was relatively young, 59, at the time). My husband was a bit alarmed but he let this run its course and it did; it took two years but I eventually moved on to other things though my taste and desire for food (and wine) never returned to as it was before the surgery. You also might bring some creamy Greek yogurt to eat with the fresh fruit.
More important however is that you start a conversation with your Mother, as best you can, about her diet and the fact that she wants to limit her food intake to cookies and chocolate. Ask if she's even aware of this. Her response might surprise you. I wish and will pray that you and she will work this out together because talking about shutting down seems to be jumping the gun as far as your Mother is concerned.

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Does the NH staff think she is nearing her end, and shutting down? Would an evaluation for hospice care be helpful at this point?

While he was on hospice, I gave my husband what he wanted to eat. Some days that was only popsicles. Some days he wanted breakfast. Some days he ate almost normally. He ate small portions of a traditional thanksgiving meal, including wine and pumpkin pie. The day he died (two weeks after thanksgiving) he enjoyed breakfast.

If professionals think that your mom is actively in her final stage, it may be best to relax about the food and let her set her pace and preferences. That is why I ask about the NH staff opinion, and an evaluation by hospice. Always make food available to her, but don't try to figure out how to get her to eat it. Don't let the poor dear think she has to hide her protein shakes! On the other hand, if it is not close to her time yet, it makes more sense to try to coax some nutrition into her.

Hugs to you. This is a very difficult time in the caregiving journey. I felt privileged to be there for my husband on the last leg of his life journey, but it was also a painful time.

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Lostfamily my mother is in a nursing home where the staff are wonderful and there is an on call/visiting doctor from a hospital 4 km away. The nursing home calls me for every little thing but, even though I am the only family and POA I'm not allowed to even give her an aspirin without their doctor agreeing and providing it.

Here once you go into a nursing home you don't keep your own doctor - her previous doctor is now 85km away from her in any event. Even if she were able to have a doctor locally I can't lift her into my truck and the nursing home staff are not allowed to do so.

As far as meals are concerned she can feed herself but for those that can't there is a separate dining room where residents are fed by staff one on one. Believe me, if her teeth were giving her trouble she'd be all over me like a dirty shirt.

She's given protein shakes several times a day but mostly refuses to drink them. She likes apple juice drinking boxes and I make sure she always has plenty on hand. She often refuses to go for meals but the staff insist and make her sit at table even if she only has a juice. You can't force her to eat.

What she did on Christmas Day was what she does every day, mostly watch tv and sleep. There are a lot of activities at the nursing home but she's always been something of a hermit and has never joined in. I call her every day, though she has a habit of answering then, confused, putting it down and leaving it off the hook for hours. I haven't visited for over a week as I've a bad cold and, as you may be aware, there's a virulent strain of the N1H1 flu virus sweeping across Canada.

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I believe it is part of the process of "closing down" for a lack of better words. I have cared for my aunt, BIL, father and now Mom and they all seemed to be about the same other than my BIL. Things just don't taste as good as they use to, the body doesn't require as much food, and in a NH they supply food but they generally do not coax or feed patients if they are not willing to eat on their own. If I did not coax my Mom at home to eat food, I would find her sitting around with a cup of coffee and cookies or candy. Her favorite food is salad, so there is no real substance there and she will have diarrhea.

I did read an article that said that dementia/Alzheimer's patients crave sugar....their brains need the sugar. At 85 I do not care if Mom eats sugar, but I would like to get a bit of eggs or meat and veggies into her every day.

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What does her doctor say? Does he/she think she needs to be on Hospice? Maybe the blood thinners need to be adjusted. Just because she eats cookies, does not mean that she isn't having problems eating other foods. Why isn't she drinking daily or twice daily protein drinks, a person can substance, even if she is a vegetarian on these drinks. She may have to move to an facility that can give her more of a level care. Please, do not take this wrong, but it sounds like she needs someone to coordinate her care, it sounds like there are a lot of different things that need to be watched, and that she is not getting that help from the facility, it sounds like she is living in an assistant living facility and not a nursing home that has a staff that can handle her medical needs. She needs to have more assistance, and if you are not able to do it yourself, you may want to do some research and talk to the doctor about your concerns. If you are not the one who goes with her to the doctor, maybe you should. I do not see anything with what she did on Christmas Day, sounds like she needs assistance other than just an alarm. My dad has staff in his room several times a day, they help him get dressed, shower, shave, they change his catheter bag, and if he can not make it to the dinning room they bring him a tray to his room, and will sit and talk to him while he eats. Is your mom in a facility that deals with dementia patients? It sounds like the staff is not trained to handle people with dementia.

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Obsessed with her looks and forever on a diet she's always been a picky eater plus she's a vegetarian, which the NH is aware of. Her teeth are fine and she munches away on cookies and chocolates every day. If I took those away she wouldn't eat any more real food anyway. Yesterday (Christmas Day) before supper she decided she'd go look in her closet. She can't stand alone, the bed alarm went off and they found her on the floor. She'd skinned a finger and, on blood thinners, it wouldn't stop bleeding. I can't lift her to get her in my truck and the NH staff aren't allowed to help so an ambulance took her for stitches. With increasing dementia it's only a matter of time before she has a bad fall with disastrous consequences.

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I think there's time for your mom yet. My mother can have only liquids now and through a dropper. But I can see her bones right through her skin yet she's still swallowing albeit much slower.

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My 88 year old father has Parkinson's and other issues, and stopped eating much for a time, and meal time is his favorite time. The doctor ordered a shallow test, and found out that he was having trouble swallowing a certain texture of food, and that water was even hard to swallow. The facility had to change his food, and had to add a mixture to his water so he could swallow it. He was getting so dehydrated and stop drinking, now with the small changes, he is able to eat again. Have you had a protein shake or two added to her daily intake. Most give around 20 to 30 grams of protein, and helps put nutrition back into there diet. It sounds like she may be giving up, you need to talk to her, and maybe talk to her doctor, if she is letting go, she may feel that there is nothing she can do, maybe some positive changes to her food intake, and someone to talk to, could help her.

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When was the last time she went to the dentist? Is it possible that she has some tooth or gum trouble that has caused her general disinterest in food? It's worth looking into just to cover all your bases.

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Then go with your gut.

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You do not need to feel guilty for letting nature take it's course. How about a conversation with her about how she feels, how she feels about dying, what she really thinks she wants to do? Of course none of it may make sense, but it is her life. Make sure she suffers as little as possible, mentally, emotionally and physically. Maybe hospice can help....

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My mother lost her sense of taste several years ago but hasn't lost weight because her sweetness taste buds do work yet. That's what dementia does. There is a resident at her AL that refused to eat and she was given Ensure 2 or 3 times a day. The staff made her come to the dining room to be social. Recently I saw Miss Dolly actually pick up her fork to put some food in her mouth. Now she eats something every day, even if it's a small amount. I agree with the "Milk Shake" idea, you might try yogurt also. McDonalds makes a yummy $1.00 breakfast yogurt with fruit and crunchy topping.

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Ensure now makes a protein supplement that for all intents and purposes looks like fruit juice. You may have to purchase it yourself if they don't provide it where she's living.

Constipation is often caused by narcotic medication - is she on something for pain?

Taste, buds wane as humans age, even more so with dementia. My aunt lost your ability to taste and enjoy food almost overnight when she had three little strokes, which were in no way obvious by the way, and they affected the area of her brain that controlled her taste buds.

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geewiz for a long time I'd take her lunch (she was eating better then), but even though it was home cooking and things she used to really like she gradually ate less and less of it until she'd barely eat a morsel so I gave up. On top of everything she's a vegetarian - the NH is aware of that - and has always been super picky. For a long time she'd accept Boost then no more. The staff give her nutritious shakes all the time but she rarely drinks them. Last spring she fell and broke her hip trying to hide a shake on top of the wardrobe so staff wouldn't know.

She's always been constipated, going #2 only every 3 days, and that was while I cooked/cared for her and she ate well. Now she tells the staff she goes every day, lying so they don't give her a laxative as those make her explode. She just tells staff stories to get out of things and they know it.

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It might be 'near the end' OR it might be the dementia escalating. Spend some time with her at meal times (You can ask for a mask if you think you are getting a cold). I've watched the aides at the memory care center cajole the residents into eating some of their meals. Some of the shake type supplements can be passed off as a 'milk shake' you brought for her. (Get it cold though). Apple sauce and puddings can go down easily. Keep trying different items and you may get her past this phase.BTW, the staff should be able to tell you the weights. Palliative care doesn't mean we can't try to encourage them to eat. If you don't have any success, at least you will know you tried.

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Are we nearing the end?

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