Calorie dense foods for late stage Alzheimer’s

[Albless]

This is more an expression of my frustration than anything else. This seems a safe place to vent rather than screaming uselessly into a void!

My DF, who first showed signs of dementia about 11 years ago has been in a nursing home for over 2 years now. He has been in the final stages pretty much for all that time. My DM has POA, and has buried herself in denial, which I have come to understand as some kind of self protection which isn’t entirely conscious. DF is 90, can’t move himself so everything has to be done for or to him. He can eat a little mushed up food, and drink from a cup. He rarely speaks, and then usually only to say, “please help me”. He is often agitated.

The nursing home have weighed him and he has a BMI of 15, so they are giving him calorie dense drinks and mush. I was there with DM when one of the carers came in and told us this. I just want to say, “to what end? Why are you doing this? Just to keep him in this miserable state for longer?!”

But I said nothing, because I’ve had all these conversations before with my DM and she just says, “But I don’t want him to starve”. My opinion is that he should offered food and drink, and if he takes it, well and good, but why are they constantly trying to shove calories into him!

Aaargh!

And yesterday I wondered - should there not have been some discussion with family about his weight and whether or not to increase his calorie intake? It was simply presented as a decision already taken by the home and my DM simply accepts it. It’s surely just prolonging the inevitable.

Sorry this is so long.

My DF seems to be the man who just doesn’t die, although he looks like a barely animated corpse. It’s horrible. Gruesome, even.

Infected pressure sores are not a nice way to die.
The nursing staff should have acted before a BMI if 15 but they are trying to stop the worst effects of malnutrition.

I would speak to GP. If its a nursing home they go in on a regular day. There is no point in prolonging his agony. Its very hard but I work in an advanced dementia unit and many residents die like this. So cruel. Is he end of life yet?

I totally get you.

My mother is now bed bound doesn't move at all needs turned regularly and can't even hold a cup. She does talk about bit more than your dad (usually to demand attention)

My sibling is complaining that the doctor hadn't seen her recently and why was she not getting physio to loosen stiff joints. I was trying to convey that we are in advance stages of dementia and it make no difference.

I'm being accused of waiting on her to die! It's difficult for the care staff I think as they seem to deal with things on a day to day basis.

This is not a pleasant experience for anyone not least your poor Dad! Why is this so undignified? I'm so
Sorry I can't offer any advice. But I do see you. I hear you and I agree.
I wish I had more to offer.

It’s a cruel horrible death. My df isn’t at this stage yet - I’m praying he dies of something else before it gets to this. He’s 85 and in a home where there are several residents now bed bound. It’s not living and it’s not kind. It’s also so complicated. If there was an off switch I’m not so sure these residents would push it. They seem to cling onto life. It’s probably much harder to watch…. Can you reduce your visits?

Care Homes are generally terrified of being criticised for not feeding their residents or them getting pressure sores.

This is a Catch 22 situation for them as stopping eating is a natural part of dementia and end of life.

It also sounds like your mum is happy to accept what they say as 'experts'.

Probably the best solution is for you and your mum to see his GP together and talk it through.

The nursing home should continue to offer calorie dense foods - Fortisip is good - for as long as your father will take them. If you are worried about unnecessarily prolonging his life, don't be. There will come a point where he refuses food /drink /medication and they won't force him. My father reached that point and died 5 weeks later.

My mother was in a care home for many years (Alzheimers). When she was first fed pureed food I felt the same as you. In particular I hated seeing her fed by carers when she was no longer able to feed herself. She was about 6 stone for the last couple of years, skin and bone.

But the care home do not have a choice, they have to offer fluids and the best option of acceptable food. It makes no difference what you or your mother think or say about it.

However if your dad does not want to eat, he won't. My mother would sometimes clamp her teeth together and refuse food, so when she didn't want to eat she made that very clear.

It was horrible watching her decline over so many years, but I came to accept that all of it was beyond my control.

Thanks for all your comments.

I guess my fear is that his life, such as it is, is being prolonged by being given deliberately high calorie foods and drinks. But even with them, his intake must still be very low.

Another aspect, which is very personal to me is the contrast between my DF’s situation and that of my DS when he was a baby. Long story short, DS was induced 4 weeks early because he had stopped growing in the womb, he was tube-fed for first 4 weeks while at same time trying to establish breast feeding. He refused to breast feed and I got zero support for bottle feeding which was as much of a struggle as breast feeding was. 2 days after I stopped attempting to breast feed he had hernia surgery and was in hospital for almost a week. He was 6 weeks old and weighed less than 5lbs. The nurses in the children’s hospital allocated 20 mins to feed a baby and DS could easily take 2 hours to drink half a bottle of milk. But no one seemed to care about that, no one offered support or help to bottle feed this tiny, low birth weight baby.

So having experienced zero support for the feeding of my son at the start of his life I do find it … galling, frustrating, mind-fucking … that there is this obsession with getting calories into my father at the end of his life.

To be clear, I do understand that my DF should be offered food and drink, and assisted with that. It’s the calorie dense aspect that I struggle with.

At the start of November last year a new member of staff was very concerned and got the GP to see DF. GP decided he should start end of life care, all his medication was stopped and he was to receive IV morphine. Then more established staff came on shift and decided this was wrong. They said that the new member of staff had “over reacted because they didn’t know DF like they do”! Nursing Home phoned GP who didn’t come back out but just agreed with NH decision. All this happened without any contact between family and GP, and no consistent and clear communication from staff to family.

Communication with NH is poor, and some of the staff seem to like contradicting each other as a kind of one-up manship. Since that time there have been more agency staff and you rarely see the same members of staff 2 days in a row. Add in the fact that my DM is hard of hearing, and only gets part of what they’re saying and just nods along a lot of the time.

But, yes, a chat with the GP would be a very good idea.

If your DF is agitated then he needs more, and is asking for more help: so what is it he wants?
My (ex)MIL doesn't have enough appetite to support herself and food needs to be really tasty before she summons the energy to eat enough.

But it's about imagination rather than familiarity for her.

My mother was ’end of life’ for two years. It is unfortunately quite common for people with dementia to appear to be near the end, and then rally. Sometimes repeatedly and for some time.

The food is calorie dense because it’s the most efficient way of feeding him. The GP is likely to be guided by the care home as they are doing his daily care, but it might help you to have a chat with them.

We have no way of telling what he wants as he rarely speaks and then it’s just the occasional word or name. For the past couple of years it’s mostly, “please help me” or just “Help” but that’s not connected to anything that’s happening in the moment, that we’re aware of anyway.

The agitation comes and goes - he groans and bites his hand. (The only part of him that he has been able to move for a couple of years is his right hand.) My mother will try to stop him doing this, and he’ll bite her hand. It is awful.

I think unless you’re (speaking generally here, not to the person I’ve quoted) in the unfortunate position of seeing someone in these late stages of dementia or Alzheimer’s you just can’t appreciate the impact on the whole body, the whole person. It’s about so much more than loss of memory, but because it is largely a disease which affects the elderly many are lucky enough to die of something else before it gets this bad.

I’m in my mid 50s. My aunt died at 60 a few months after being diagnosed with an aggressive cancer. My DF got 20 good years more than she did, but if I had to choose between going like my aunt or my father, I’d choose my aunt’s death, and the timing of it.

OP.. I'm so sorry this is happening to you and your family..
My own wonderful Mum died just before Christmas..
She had Alzheimer's too.
Sending a virtual hug 🫂.. x

I wrote a longer post but didn't want to be insensitive but you are totally right with your latest post.

My brother and I were only saying yesterday that she/we were 'lucky' because she'd recently got a cancer diagnosis..

It was decided no investigation or treatment.

Within a month she stopped eating and got a very high temperature..

Put on end of life care.
She refused oral antibiotics.

She died just over a week later.

I stayed the whole time requesting a morphine/sedative top-up if she so much as grimaced..I promised her I wouldn't let her be in distress or pain if I could help it so we were the 'lucky' ones that she got cancer.
Not having to watch her decline anymore..

I'm truly wishing for a peaceful end for your dad.

And I'm truly sorry for what you went through with your son.
I'm an X children's nurse here and am so upset to hear this.

Oh gosh OP, I'm so sorry. I think it is completely reasonable to question what seems like the prolongation of a pretty terrible life.

I also agree with you about the contrast between the NHS treatment of children/babies and the elderly. It seems illogical to me - before anyone says I'm ageist and want to kill off the old, I'm not, I'm asking for some sort of parity. But I would also argue that if resources are scant, they are better spent on the very young than the very old. My son had a similar experience to yours and ended up with a hospital stay which could have been easily avoided with minimal help. In contrast, I asked for my father's medical notes and got sent 400 pages for the last two years.

Oh gosh this resonates. My stepdad has vascular dementia and is declining rapidly, although still at home with my mum (for now). He's quite confused and distressed mostly. I wondered why she spent so much effort in making sure he got his flu jab this year, but didn't dare say anything.

This weight loss should have triggered Dietician referral.
People with dementia lose weight, BMI of 15 not necessarily result of poor care.
The advice will be, as you say, calorie dense/ foods enriched with butter, cream, cheese. Also about good positioning to eat, good feeding technique, focusing on times of day when least tired, assessing swallow, dentition etc to see if these are impairing intake.
I hear your frustration, but if the Care Home don't try to give your Dad food and drink according to his care plan they could be charged with wilful neglect.
A Care plan that just presents food with no assistance to someone unable to feed themself would trigger a safeguarding enquiry as neither care homes or family carers can let someone starve to death.
There may come a time when your Dad can't swallow the food or drink. There would then need to be decision about whether artificial feeding is in his best interest. It's not likely to be, not least because in end stage dementia the body stops being able to utilise nutrition.
Sorry you're all living with this, it's awful isn't it.

Sympathies OP. My DF is in a very similar situation and my mum is determined to keep him alive and was delighted when changing his meal times and diet meant he put on weight (and like @Hedonism's stepdad, gets his vaccinations). He can't move much, or speak or see.

He sometimes cries but can't explain what's upset him. He's been like this for years now, there's nothing I can do.

It's horrible - the only people that seem to benefit are the owners of the home and the pharmaceutical companies.

Sympathies here too. My grandfather was in a very similar position 2 years ago, except he was still overweight when they started introducing the high calorie shakes, because he had lost a little weight. It was bloody ridiculous. The staff would say ‘oh poppy has lost a little weight, we can’t have that’ and then they would constantly be there giving him high calorie and nutritional supplements. He eventually died from a fall and head injury. At its lowest, I’d guess his BMI was around 26-27. It seemed ridiculous to me they were even weighing him. I have no idea what his trajectory would have been without the fall, but I have no doubt that those drinks were part of what was keeping him physically strong and robust before his death, even though his Alzheimer’s was very advanced. My father was of the opinion that being quite an expensive care home, they did want to extend the life of the residents, as there could be vacancies after deaths. I was skeptical about that but there were probably about 3 or 4 other times they could have let him pass quite quickly from one thing or another, but they didn’t, even knowing our wishes were to avoid life extending measures (which were based on the wishes he had consistently expressed when he could).
My guess though is that for everyone who is quite pragmatic about death and feels similarly to us, there is someone who wants their relative to receive any and all intervention to extend their life, irrespective of the quality. One of my colleagues was beyond furious that her mother with very advanced dementia fell out of bed and died from the injury within 2 hours, and she was pushing for an inquest to lay blame. Her mother was bedridden, non-verbal, and tube fed. Honestly, I was bloody grateful when my grandfather fell and died quickly. My actual grandfather had long gone, his body was just a shell that resembled him with a level of functioning similar to a newly born infant. I maintain there was nothing cruel or negligent about his death. If staff did make a mistake that contributed to his death, I’d thank them profusely. Death can be far kinder than living sometimes.

My Mum is in exactly the same state. The home suggested calorie dense supplements before Christmas, but we declined these. My sister and I have health power of attorney and there is no way Mum would want to be kept alive like this. This triggered a meeting with the GP and the nurse in the home who were very supportive and we have agreed she won’t have any more medication to prolong life (antibiotics etc) and won’t be sent to hospital if unwell. So whilst it is painful to watch I feel reassured she’ll end her days there. They are giving her soup, yogurt, drinks etc. So she is still eating and has been going like this for 3 months. It feels never ending.

Maybe see if you can arrange a meeting with yourself, GP and care home? At least to talk through the options.

I completely agree about the feelings of wishing it had ended sooner. She’s 84 now and had successful treatment for breast cancer at 70. I often think back in the day she would just have died of that and never got to this stage and that would have been better.

Big hugs as I’m finding this final slog so hard so know exactly how you feel.