DM not eating but doesn't act like she's approaching end of life

[Magnificentkitteh]

My DM (81) has advanced heart failure which is implicating other organs (kidneys and liver) with oedema and episodes of extremely low blood pressure and blood sugar. She has had sporadic confusion but I haven't noticed this at all in the past few weeks so am starting to think it may be temporary and linked to the low blood sugar episodes, rather than vascular dementia as I first thought, but the jury is out on that.

Most of her symptoms are explainable by malnutrition and she has been diagnosed with various mineral deficiencies and prescribed supplements and ensure drinks. She is very underweight - 5 stoneish. But she is still eating very little and not really drinking or taking the meds either.

I think the general advice is to accept that she is likely approaching end of life and not to pressure her to eat or drink, but she doesn't act like someone who has accepted this state of affairs. She is still pushing for appointments from her GP and medical team, talking about getting strength back and cooking more for herself.

But her actions don't really match her words as she doesn't do the things that would give her the best chance of doing this. I'm finding it quite hard to know how to best support her as it's hard to watch her getting weaker and weaker while not seemingly wanting to accept she is approaching end of life. If she was sleepy and confused or withdraw it might be easier to reconcile in some ways.

Anyone experienced similar?

She may well know she is dying but gets more reassurance from pretending to herself that she isn't. And if you're on ensure drinks and are feeling sick from the liver issues then they aren't very motivating to drink. Have her dieticians tried different flavours? Aymes do a cool ginger one that is less sweet (they are all so relentlessly sweet).

It sounds like her body is failing but she doesn’t want to acknowledge that. Or she knows it but doesn’t want a lot of sympathy/fuss. What is she like usually regarding illness and aging?

My mum is similar, she said the other day about a scan the drs were concerned about and how she was worried now. Then she sat up and said ‘oh well must keep going’ and firmly closed the conversation. She is clearly aware of her deteriorating health but doesn’t want to discuss it. She’s always been a bit like that, reluctant to dwell on things she can’t change.

Yes similar I suppose. There always seems to be a reason why she's not feeling tip top today but if she can just get shot of this cold/the weather gets better/the meat wasn't too tough or whatever then things would be different. I suppose I just follow her lead and go along with this fiction, but I don't know if I ought to be doing more to get her to eat/drink/take meds or accepting that she doesn't want to, regardless of what she says.

She's supposed to be having an endoscopy to investigate her swallow but it's been postponed twice because of low blood pressure and low blood sugar and I don't know if it's actually been rearranged. Part of me feels like that's quite an invasive thing and I wouldn't be comfortable pressurising her to have it against her wishes, but my current approach is quite passive and I don't know if I should be leaning more into her fighting talk.

Sorry OP, it's so hard isn't it.

Apparently, appetite for food sort of evaporates as we approach the end of life. Partly to do with reduced brain function, partly as the body is less able to process intake, and partly as swallowing can become difficult.

This is sometimes misunderstood as people refusing to eat/drink, whereas it's really a total loss of interest in something that no longer really benefits them as it once did.

Regarding her refusal to accept her situation, it seems that many of us approach death in a state of complete denial. I suppose it's a sharp learning curve, we've never done it before and I expect few of us embrace the idea fully!

There's no "right" way of handling this, but perhaps the easiest is to try and accept whatever terms she chooses to view it all in. Easier said than done, I know 💐💐💐

Thank you, that's helpful. I suppose it's easy to imagine we will approach our own end of life in a logical manner whereas we probably do versions of this our whole lives, where our words and actions don't match up.

I think I've accepted that she is near EoL, but what that means in practice in still trying to work out. I have no idea how to approach Christmas for example and am just taking things a day at a time. But this could go on a long time.

Yes, the not knowing how long it's going to go on for gives everything another layer of difficulty! (and might also explain her "carry on as normal" approach)

Good luck OP, very tough times.

Thank you. To an extent this has already been going on a fair while but it's ramped up, with two hospital admissions in September and October for ridiculously low (unmeasurable) blood sugar. She currently seems relatively stable with no blood sugar/pressure dips that I know of in the past few weeks though it's hard to imagine how long that can last while barely eating and already malnourished. The human body is more resilient than you'd imagine, but it's quite horrible to watch.

I agree this is horrible to watch.My mum went 4 weeks without food once she was admitted to hospital the last time. All you can do is take the lead from her. You are doing the right thing by respecting what ever fantasy she lives in.

I'm sorry that you have been through similar.

Really feel for you OP. I nearly had a breakdown over my mum and food.
To us it seems so simple.. your complaining that your weak, tired, not well.. all of these things are connected to your not eating. You don't want to be in hospital, but you are going to end up collapsing through lack of food and breaking something and that will be the start of the end - It seems so simple, most of us have spent our lives living the opposite - trying not to eat too much, so in my mind being asked to drink tea and eat Chocolate biscuits and cake and custard seemed like a sodding dream !
It was so frustrating. Mum was on the aymes shakes, although she did prefer the soup versions.
After going at to the Doctor and ending up a sobbing mess, she told me that i had to stop forcing the issue. All you can do is try to make sure there are high calorie foods available. I was lucky that mum would take things like a Chocolate mini roll heated with a few tablespoons of custard on it, or a cream of chicken soup, but the amounts were very small and i couldn't trust her to eat if she was by herself ( this was part of her beginning to wind down and also Alzheimer's ) but had more luck if i ate with her as more of a social thing.
i would say the last 12 months her appetite was non existent. The guilt was terrible, and i questioned everyday how thin can someone get and still keep going - in mums case it was just over 4 stone. It seemed genuinely amazing how someone could survive on so little. I felt like i was failing, that people would think she was starving to death and it was my fault.

I'm so sorry you are going through this, it is so hard to understand unless you have experienced it, but all you can do if offer little and often, but not push and accept that it is just nature taking its course. In the end i had to accept that mum wasn't dying because she wasn't eating , she wasn't eating because she was dying - and that process can be long or quick, but either way it is out of your hands. Just agree and keep the peace, there is no need to make the last few months or however long is left a battlefield over food - it isn't worth it and it wont change the outcome anyway

In the end i had to accept that mum wasn't dying because she wasn't eating , she wasn't eating because she was dying - and that process can be long or quick, but either way it is out of your hands.

Perfectly put 💗

Who is preparing meals for her? Is she doing it herself or is someone doing it for her? My mother is similar and will always say say she’s not hungry but if she’s taken out for a meal she will eat pretty despite protesting initially that it’s not hungry. It seems more that she doesn’t have the inclination to go and make food but will eat if it’s presented to her. She will eat chocolate or a yoghurt if left to her own devices but that’s about it.

She has a partner who does the cooking but really it's whatever or whoever is cooking including eating out unfortunately. Puddings were slightly better but even those not really going down any more