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Long story short, my 90-year old bedridden grandma is slowly dying... or maybe not so slowly. The doctor wouldn't specify how long she's got, but she's been refusing almost all food and water for about 10 days now. 'Almost' being the key word. I live with her and have a good relationship with her. We were never close, but we respect each other and I know her life has been miserable for years. She's almost blind, almost deaf, has no hobbies or interests left - she just lies there and stares at the ceiling. So when she gradually started eating less and less in the last 3 months, I accepted it quickly - after all, I wouldn't want to live the kind of life she has left :-/ In the past 10 days or so she refuses practically all food and drink. She only drinks to take her meds and to moisten her mouth. I've started applying lip balm to her lips and she likes that. The rest of the time she's generally sleeping or staring blankly mid-naps. She's not demented, just tired and apathetic. But that's only when it's just the two of us. When someone else is here (I get lots of help from family and a hired aid), she seems to try to please them and is more likely to agree to a meal. Of course, she then eats only a few tea spoons, and is quite happy to stop eating again as soon as this person leaves. I am not sure what to think. I firmly believe that she's doing it to please them, seeing as they have a hard time accepting that she's nearing the end. She doesn't seem to take any enjoyment from the food, she doesn't even care what it is. When we are alone, I offer her food and drinks regularly and she only accepts very rarely. I've tried explaining to the rest of the family that pushing her to eat is only delaying the inevitable and we should allow her to make these final decisions for herself... and they generally agree, but they just can't do it. She sees them and feels their pain and frustration and she tries to be a good (grand)mother to them - and I believe this is making her miserable for longer. Yes, I sound pessimistic, and no, she's not terminal. But she's shown clearly that she doesn't want to live, and I have just accepted that I cannot change that and the only thing I'm required to do is make her comfortable. Any thoughts, advice and similar stories are most welcome - I just feel so alone, and sometimes think that maybe I'm the evil one, maybe everyone else is being better family than I am, and I am just there trying to kill her faster and get the apartment for myself. But then again, I am the one being up half the night trying to manage her pain... Thank you!

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My mother had a stroke and decided to "give up". They moved her to another section of the hospital where nurses provided plenty of encouragement and palliative care (lip balm, wiping the inside of her mouth, etc.) (She had previously signed all the legal papers specifying in detail what type of care she wanted in each situation, which I think made things considerably easier ...in fact I doubt the hospital would even admit they _provide_ palliative care without ironclad advance end of life instructions.) With her not accepting any food or water, she died in just three days.
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blannie: Thank you for that useful tip! That was new information to me.
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ah, blannie, thank you; never knew that's what that was
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Debdaughter if you put her name "belledarcy" in the search bar on the left (top where the bars are), you'll see the posts she's posted.
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thank you, cwillie, but how did you find this?
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www.agingcare.com/questions/Its-not-a-relief-watching-her-die-Its-peaceful-Anyone-else-felt-that-way-433276.htm
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how do you search for her? I clicked on her name
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She's ultimately only going to do what she has the capacity to do given her strength, will, and lack of livelihood for want of a better word. Those few extra calories when company comes really isn't going to prolong her very much. In fact, the small act of showing an effort even if for their benefit may make her feel like she is soothing them. Sometimes, that has a positive effect, or a negative one on a mind. But in the end, it's not adding days. Not really scientifically possible on a physical level. She will pass when it is her time. Right now, it is her choice to eat or drink. It would be another story if someone pushed fluids, feeding tubes, etc. at her age. But time spent in her presence even when you might not think she knows you're there, she will appreciate if it's comforting to her, like the lip balm.

Another thing to consider is asking her when she is awake where she goes when she's asleep. The mind is a vast universe with endless possibilities. She may be enjoying the respite from old age, and it might be more pleasing to be there more than here. In a way, that idea for your mother is beautiful to me. I would want to have that pleasure if I were in her situation. You might find that she would love to tell the story. Then, maybe she might even feel a little famished. But, it is her choice. Much peace and love to you and your mother.
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BelleDarcy: Deepest condolences going out to you.
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Belle wrote this at the 3rd post.."We don't have hospice where I live (Bulgaria)". We need to read ALL the posts to not give suggestions to something she's already stated they don't have.

As a nurse, I've seen many families try to force dying patients to eat. Whether they are in denial of their LO's condition or they are encouraging food because it's a basic human need and they MUST be hungry, I don't know. They mean well but they don't understand human body shutdown.

When my dad had 2 severe strokes, they put in a feeding tube. As his health declined, the liquid nutrition was not absorbing. Even though I had seen this many times (as a nurse), it's different when it's your family member. I reverted to wanting him to be nourished. Hospice did a wonderful job of "reminding" me that he was preparing to pass and I would be hindering the process and causing discomfort. It's the last little thread we hold onto before we have to give in and accept death.

We all act differently, no one is right or wrong.

Belle, may your grandma rest in peace. You did a wonderful job.
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It sounds like you are a loving and insightful daughter. Is it possible your mom is ready for Hospice? Your MD could write up a Hospice referral for an evaluation. My mom is on Hospice now. I worked as a therapist in hospitals for 40 yrs. Elderly patients often choose not eating as a way to die-it's one of the only things they still have control of! A few bites now and then won't make much difference as long as no one is force-feeling her. My heart goes out to you ❤️ You sound like a wonderful person.
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Your relatives basically "force-fed" grandma because it made THEM feel better - not grandma - and grandma played along because she knew that it pleased them! This same phenomenon is also seen with patients with terminal illnesses - where the family members insist that the patient eat/drink, even though the patient has no desire to do so.

I find it cruel when family members do this to persons who are clearly at the end of their time here on earth.
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Om Shanti!
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Her grandmother did pass away and she posted a lovely, thoughtful post about how her grandma's passing made her feel. Search her name and you'll find it. Her grandma and BelleDarcy are now both at peace. She absolutely did the right thing.
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It's easy for family members to come in, Think or say cruel or insensitive things because they have no idea what it is like being there all the time. YOU ARE ! Your grandmother deserves to die with dignity, She is of sound mine and this is her wish. If not already, You need to be POA and Executor of Estate if she so wishes. This crap happened with my dad, I was the only one besides my dad that took care of my mom. Dad did 80 % of it, A family member come thru one day and told him he was not patient enough. My mom had Dementia and Parkesins Disease, What a cruel thing to have said. It really hurt him to hear such a thing.
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Prayers for you. You were doing everything exactly right. You showed compassion for your grandmother, treated her with dignity and respected her wishes. Most importantly, you were there for her.
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How'd you find that out?
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I believe Belle's grandmother passed away a few days ago.
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Please call Palliative and Hospice care Nurses in your area. They will support you and your family.
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It sounds like your family is resisting because they do not have to do the care--so it is easy to judge sitting on ivory towers; your choice is to hospitalize her because she is refusing fluids and nourishment--feeding tube or no feeding tube. You need to call 911 and get her in the hospital.  She will die without fluids. It sounds like you need to do a family care conference and that's best done in the hospital setting. At that age, family will dispute if she has her mind or not and claim she can't due to dehydration. Anyway, if she does not have the ability to make up her own mind -- then you will definitely need to get with your family and make a decision--otherwise at this rate she will end up in the hospital from dehydration and damaged kidneys due to lack of fluids. But if your family insists on "do everything" make them share on the burden of caring and see how fast they change their mind because they actually have to do some work, bathe her, change her diapers, and cleaning up her bowel movements. Let's talk about her bowels. If she is not eating and drinking fluids, chances are she is impacted--they get impacted in a matter of 3 days. If if they cannot poop, the stool becomes large and hard and unable to pass the feces. Another hospitalization will be required for that serious issue.   Bottom line you and your family MUST get together and make some decisions..and if your granny is still refusing fluids call 911 and get her in the hospital because it sounds like your family is fighting everything you do. Oh and if she has kidney damage from the dehydration you CANNOT use Fleet enemas, Miralax, mag citrate or Milk of Mag because they will damage the kidneys (the phosphorous will form crystals in diseased kidneys and destroy them)--READ THE LABEL it will tell you about warnings. If she is dehydrated the last thing you want is diarrhea from laxatives without fluids to replace it.  She will need to see a doctor about her bowel issue. and yes if she is impacted that will impact her appetite not to mention how uncomfortable it is to have a colon full of stool.  Bottom line--DEHYDRATION WILL DAMAGE KIDNEYS so get her in the hospital now..and if she is passing liquid stool she is impacted as well because the bowel excretes liquid (which is normally used to soften stool but if the stool is hard it cannot do that so the water passes around it making the situation much worse).  Constipation is also a very serious issue, by the way. And the skin. If she's in bed all day with lack of nutrition think what that can do to skin and bedsores.  It's a mess. 
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BelleDarcy, good for you, you can see the forest for the trees, and that is a special gift to be able to do that... you know that Grandma's journey will be ending before too long.

It can be frustrating when other family members are in denial. They see Grandma eat a teaspoon of food and right away she is on the road to full recovery. And you know that Grandma is just being polite to her guest.

As long as the family isn't getting out of hand, let them continue to believe what they want. Grandma knows that you are on her side, and that you are allowing her to make her own decisions :)

Regarding the Boost type drink. My Mom would refuse it unless a nurse put ice into the beverage to water it down, thus not so sweet tasting.
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I don't think you need advice. I think you are on exactly the right path.

As long as all the other relatives want to do is encourage her to eat some, and they aren't wanting invasive tests or treatments, I think I'd let them be.
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Countrymouse, she's always been anaemic, so am I - it runs in the family. However, it has gotten worse in the last 3 months. It was controlled while she drank the Boost-like thing, but since she started refusing it (and we've tried different tastes), her blood count has fallen. She didn't just lie and stay in bed one day - she had a hip fracture 3 months ago after falling repeatedly in the last 2 years and refusing to use a walker. While in the hospital, blood appeared in her urine. All possible kinds of tests were done, and everything turned out normal. Sadly, modern medicine has failed to pinpoint the exact reason for the bleeding. It is not severe though, doesn't cause any discomfort, and her blood count remained steady for 1.5 months after the bleeding started. So that's not the main reason. As I said, nobody has been able to give us a diagnosis and we spent some very horrible days and nights in 3 (!) different hospitals and have sworn to not do the same to grandma again. All things considered, I'd say anaemia is a peaceful way to go (Internet research).
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Anaemia doesn't happen on its own, not dramatically, not just because of failing appetite. Has the doctor given you a formal diagnosis?

Strictly speaking, the doctor is bound to preserve life rather than to prolong it; although that catchy little rhyme "thou shalt not kill, but need not strive officiously to keep alive" was written as an angry satire on modern attitudes and not, as many medical students suppose, a recommendation. Still! - it does give the gist.

Your belief that there is no point in a lot of procedures and pills more than makes sense; I would say it is positively humane. Subjecting your grandmother to invasive tests is pointless unless there is an aim to treat; and then again subjecting her to the kinds of treatment needed for serious illness? - she's ninety years old, frail and tired. It would be downright cruel.
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Thank you, guys!

We don't have hospice where I live (Bulgaria), but there's a doctor who visits regularly and is up-to-date with her condition. She isn't in a lot of pain by any means - she often has stomach ache, but we treat that with regular meds, as he said the pain's not bad enough for anything 'hardcore' yet. And he's probably right, since she sleeps about 22h/day and rarely wakes up in pain. When she does, we give her meds and they usually help quickly.

I am her primary caregiver, but simply because I live with her (in the last 6 years, in fact) and work from home. Her daughters and my cousin are all great and they help a lot - there's one of them here almost every day for a few hours, giving me time to go out and keeping her company. Not that she needs much company these days - she gets tired of it very quickly and prefers to get back to sleep, so we pretty much keep each other company while hovering around her and making sure she knows she's not alone in the house.

Our doctor is...well, a doctor. He told us point blank that his profession obliges him to prolong life, but it is ultimately our decision. We've decided to not have any IV fluids, but are giving her a Boost-like drink for her anaemia. She doesn't want to drink it (I prepare it and I make it tasty enough for ME to drink!), though, so her blood cell count is quite low. Blood transfusions are pointless at this stage, and since she isn't in any great discomfort (no serious pain, no bed sores yet, no delirium or anything like that), we just follow her cue as to what she wants when. After all, she's a grown-up.

I spoke to her yesterday and told her that if she didn't start eating and drinking more, her heart will stop (as a result of the low haemoglobin) and asked her if that worried her. She said it didn't. She's not afraid to die, that much is obvious, but not suicidal either. She's just doing the easiest thing possible (has been for the last couple of years, actually) - in this case nothing. And yes, she is very weak now and cannot really do much, but even before, when she could, she wouldn't, and has been saying for years that it's time my granddad came and took her. She's just living on autopilot, it seems, and I see no point in a lot of procedures and pills. Does that make sense?
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I agree with CM. Gram is lucky to have someone who is judging the situation so well.

You say that Gram is not terminal. Would you consider a hospice evaluation? Their knowledge of what is likely in the end stages of life can be a very valuable help to all involved. They are particularly adept at managing pain.
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Hello Belle, and welcome.

So you're living with your grandmother and you're her primary caregiver? Do you have any support with this day-to-day?

I'll come back to the eating and drinking issue, but for me the most important point is that last bit - your grandmother's pain management. Could you say a little more about the cause of pain and what treatment your grandmother is receiving for it?

You're not the Evil One (!), you're doing a grand job and following recommendations - offer small appetising meals regularly, ensure your grandmother has water available at all times (sorry, that sounds like what pet owners are told, but I'm sure you know what I mean), ensure that she is comfortable.

But beyond counselling them to take no for an answer, I don't think you need worry that the little extra amounts your grandmother is accepting from visitors will be enough to make a significant difference; and if your grandmother responds as she is doing it will make them feel better and it will do her no harm. That doesn't, either, make you wrong not to nag her on and on about it. You are her daily routine, they are her special occasions. The difference in approach is fine.

How your grandmother feels about life in general... That's very hard to judge, I know. My great uncle lived for years in long term care, saw only my aunt, and told her on each occasion that he wished he was dead; and no doubt he did; but he lived on all the same. My grandmother refused food and water and meant it. I've come to believe that the point of living, as in "what's the point?", has a different meaning when you get to very old age, and a quality of life so reduced that you might once have thought it intolerable you just bear (grinning optional). It takes a very strong will, which most people in their nineties cannot muster, to starve yourself to death if your body itself is physically craving food.

So I don't think your family is being cruel - they're making a fuss of their materfamilias, quite right too - and I don't think you're being callous or neglectful either.

Wanting your grandmother not to suffer and not to be miserable is not the same thing as wanting her to die. It sounds to me as if you are making the best possible job of standing by her, and she is lucky to have someone who is judging the situation so well.
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