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!
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.
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?
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.
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.
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.
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.
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.
See All Answers