My father is losing weight

[MereDintofPandiculation]

My father is in a nursing home. He has steadily declined over the last few years and is now bedbound. He’s sleeping a lot, is comfortable, and happy. If he had told me that quality of life was important to him, I would be content that his life was slowly drawing to a peaceful close.

However, he didn’t tell me that. He told me that he wished to continue living, that he wanted to be resuscitated if necessary, have all treatments available, and end life in a hospice. That was 4 years ago. Since then he’s declined cognitively and become very deaf, so it’s not possible to revisit that conversation.

What is worrying me is that we’re not doing everything to prolong his life. He had antibiotics for a chest infection a few weeks ago, but he’s still being served normal meals, not being given protein drinks for example. Am I betraying his trust?

I’m going to talk to the manager next week, but I’d like to hear other views

I think you're right to link him sleeping far more to him being near or nearer the end of life, and there's no treatment for that.

Does he eat all the normal meals- how is his appetite? Does he eat more if he's fed? Is he having energy/protein-rich food, and will he eat it? - cream and sugar in his porridge, hot buttered crumpets, smoked salmon? Or is he struggling to swallow complex textures?

You could ask for a dietetic review - why not?

It’s not unknown to lose weight as we age, the body cannot use the nutrients like it used to. Weight loss can also be a symptom of heart failure.

My dad is not in a nursing home, but has noticeably lost weight recently. I suspect he's not got a great deal of time left sadly. He used to be a big guy, now he's skin and bones. It's "just" old age.

When my dad was sick the doctor and nurses commended him on his diet, the fact that he was trying to stave off weight loss with rice pudding most evening, shakes in the morning and as much of a meal as he could manage, and yes, boiled eggs, mashed potato, custard, jelly and ice cream, bananas etc Definitely talk to them, really diplomatically about options. Best of luck! X

Appetite not good. He works his way through meals he’s given, taking possibly two or three hours. He doesn’t like being fed. Sometimes he forgets he can swallow.

One problem is that he has always been very faddy, doesn’t like any meat except for beef, doesn’t like cheese, doesn’t like nuts, doesn’t like eggs except scrambled or omelette. So protein is a problem.

I think his appetite has gone as he no longer eats his favourite sweets, hasn’t touched the bag of chocolate buttons he had for Christmas.

I think we could be doing more to get nutrient into him. But should we? The answer would be easy for most people - he’s happy, leave him be. But he did talk to be about wanting all that medical science could do to keep him alive

Mum at 70 was quite clear what she wanted her later years to look like but it was a different story once she actually got there. I'd like to live forever - with my current capabilities.

In the four years since he stated his wishes has he declined a lot? Is what he wanted then still what he wants now? That's the big question.

I would suggest, brutal though it sounds, that it doesn't matter what you do at this point, the outcome in six months will be the same. Do whatever makes you feel less guilty.

he did talk to be about wanting all that medical science could do to keep him alive

but years sitting in a nursing home could change that. It really isn’t a good quality of life. The body, and mind, gets tired. If he’s happy enough in himself, and in no pain, I personally wouldn’t fight to build him up, especially as you can’t have a conversation to confirm that’s what he wants. You would be doing it for you, not him.

In the four years since he stated his wishes has he declined a lot? Is what he wanted then still what he wants now? That's the big question. And that’s the question I can’t ask him.

You would be doing it for you, not him. I certainly wouldn’t be doing it for me. I’ve lost my father as I knew him.

My mother has a similar view to your father but regardless her body is crumbling and deteriorating. She would also want “everything possible” done but the fact is there isn’t much more that can be done - what she wants is impossible unless she can have a fully body transplant into a much younger body…

To some extent it depends what's wrong with him as in why he went into the home in the first place.

I think try to not to think too much about what his wishes were 4 years ago and focus on where he is now. Resuscitation is absolutely brutal and if it were attempted could well lead to a worse quality of life than he had now IF it works. Would a hospice even take him if he's in a home with staff who know what they're doing and is he well enough to be transferred? They're absolutely wonderful places and I had the bittersweet experience of being there when my dad died in our local one so have some experience of this.

Having been in this situation with my late mother I think you have to just focus on the facts as they are now. Mum had vascular dementia, swallowing became almost impossible at the end and she died from aspiration pneumonia. Her final weeks/months saw her losing weight and sleeping a lot. About 6 months earlier she wasn't well, they called the doctor and I went along too. The doctor suspected an infection and prescribed antibiotics but had concerns about if she'd be able to swallow them. The alternative would have been a trip to hospital for IV antibiotics and all the distress/upheaval that would come in such a scenario. As her POA I didn't think that was in her best interests (to be another demented old lady in hospital with nobody who knew her how she was etc). We did the end of life care form and my wishes were for her to stay at the home where she was happy and surrounded by people who knew her and loved her (it was a super loving home, we were very fortunate). After that was done and signed both the nurse and the GP said I'd done exactly the right thing. Life at any cost isn't always the best route when they're frail and ill. It turned out to be the best decision not least because this was all decided right before Covid in February 2020. Not even sure they'd have had taken her at the hospital. We were able to visit again by the summer but restricted and appointment only by the time she died in September 2020, but she was sleeping for most of those visits. Thankfully for what turned out to be the last visit she was awake, looked absolutely fed up and couldn't speak, but recognised dad and me and was following our conversations. We broke the rules and gave her a kiss as we left which she liked (smiled) and I'm so glad we did as things turned out. She died 6 days later. The home home were great, we were allowed in to be with her on her last day.
I feel for you, these are always difficult decisions, but I think you have to try and focus on what's best for your dad now which is not necessarily the same as his stated wishes 4 years ago.

I'm really sorry. I always seem to be the most negative voice on this board. But this is the normal progression of cognitive decline, for which there is currently no treatment. You can be sure that you are doing pretty much everything that medical science can now do.

A drastic intervention would be a feeding tube, which would increase his nutrition. Evidence shows that they make no difference at all to quality of life and length of life when used in cognitive decline. The theory is that the body stops being able to absorb the nutrients so well.

For sure, when you visit him, put the chocolate buttons out on a plate and model eating them/talking about them; he make take a few if he sees you doing it. And there is no harm at all in trying a supplement drink if the home will agree. He certainly may be able to swallow liquids more easily and with less effort than more solid food.

I think for now, look at what his situation is communicating. He's sleeping; little interest in eating; showing no drive to change that. Is that how he was when you last had your conversation? How were his actions then?

I’ve already signed a DNAR on the grounds that he didn’t fully understand the procedure and that it has a low chance of success. I don’t think I’d want him going into hospital either - he has already specified he’s not to be taken to one of the hospitals. And he wouldn’t take well to a feeding tube.

Interesting comment on feeding tubes Evidence shows that they make no difference at all to quality of life and length of life when used in cognitive decline. The theory is that the body stops being able to absorb the nutrients so well. Can I extrapolate this to protein drinks etc? That the proportion of the extra nutrient being absorbed makes the exercise futile?

Not being a dietitian, I went looking for more evidence. I have probably overstated lack of nutrient absorption as a problem with feeding tubes. Not the pointlessness of them in these circumstances though.

This is a paper about nutritional supplements (drinks) in dementia- from what you say your father doesn't have a diagnosis of dementia, but you mention significant cognitive decline. The paper was cited in a review of evidence on nutrition in advanced dementia.

What I take from this is that yes, weight increased in the people who had supplement drinks. But there was no change in how they lived, their length of life, or their cognitive status.

Other papers and dietetic advice i read said that, if you're going to try nutrition drinks, it should be with a specific goal in mind and for a set length of time.

So if you would like him to say be the same weight as 3 months ago, you could look at trying to achieve that - if he likes the drinks.

I'm perhaps influenced by my mum simply refusing the bloody things. Lucky I worked in the hospital as they would tell me 'she's having 2 Ensures a day' when what they meant was they were opening 2 Ensures a day which sat untouched on her table. If you tried to persuade her to have any she wouldn't even have a sip! We got them crossed off her drug chart in the end as it was such a waste and a pretence.

Dint my DM started to lose weight noticeably about nine months before she died. The trajectory wasn't a straight line down. Occasionally for a week or a fortnight, she would rally a little.
This coincided with DM no longer recognising a spoon or a fork. DM started to feed herself with her fingers but didn't always know where her mouth was or what to do with food.
For example, if I brought her a little home made iced fairy cake she couldn't put it in her mouth. I would break off a little piece and gently try to coax it into her mouth. If I was successful, 50% of the time she would just spit it back out.
I started bringing little bite size items like caramel shortcake piece by Thorntons and again these were rejected.
The staff said she would eat porridge in the morning and soup at lunch with them, sufficient to sustain her. I was bracing myself for her being fed by a tube.
She, too, hated the Forsip drinks and little shakes which would sit unused on her table. One day, however, I brough her a Nakd Fruit Smoothie and that day she gulped it down and smiled the biggest smile in about a year.
My advice is to just keep doing, what you are doing but not try to second guess him.

Thanks everyone for your thoughts, and thanks, @PermanentTemporary, for that interesting paper. I spoke to the Manager this morning. She confirmed that all the food they serve is fortified. She’s put him on the list for the nurse practitioner tomorrow, meanwhile we talked about extra ice cream and milk shakes. Sure enough, when I was with him this afternoon, they brought him in a chocolate milkshake which he drank with enthusiasm.

Am I betraying his trust?

No. By your own words, he is safe, comfortable and happy and receiving appropriate care for someone at his life stage. His age/illness may not have progressed in the way he imagined when he instructed that he wanted all available treatments, and he may not have imagined that this would be what his life would be like when he said he wanted it kept going as long as possible. This does leave you in this quandary, but I would focus again on safe, comfortable and happy. It's all any of us could ask for.

He said he wanted to end his life in a hospice, did he expand on what he thought that would involve, because it seems to me spending his days in bed, sleeping, is pretty close to what many of us imagine hospice life to be like, just longer term.

Out of interest, when he had this conversation with you, did he have a realistic idea of what could be involved and know what he was asking for? Eg have close relatives been resuscitated/ had continuing medical care and he wanted that? Or was it a more general concern that he would be neglected and allowed to go before his time, and he wanted to make sure he'd have every chance to live life to the full?

I don’t think he had a realistic view of resuscitation, which is one reason I felt OK signing a DNAR. And I don’t think I would now opt for hospital treatment or a PEG. I think what is behind his decision is a feeling that it is wrong to shorten life either deliberately or by withholding available treatments. Coupled with a rather touching faith in the NHS’s ability to control pain.

He had nursed his wife through her long battle with rheumatoid arthritis and her eventual succumbing to complications of the disease. So he has some idea of the suffering involved in long term degenerative disease. He was against the GP’s desire to take her back into hospital, not because he didn’t want to inflict further suffering, but because he thought she’d die on the journey. I knew, because she’d told me, that she didn’t want her life prolonged, she felt she had nothing to live for. This is partly why I think what’s driving him is a religious view that once should try to keep life going as long as possible.

It sounds as if you are absolutely following his wishes Mere 💐

An update - he’s been enjoying his chocolate milk shakes, and doctor has decided against prescribing protein drinks for the moment, as he’s put on 3kg in the last 10 days.

My lovely dad was totally sound of mind and quite fit, but within a few months got frail in late 80s. He just stopped wanting to eat anything much, having always enjoyed his food. He died within a couple of months of an infection, I think it’s just the body winding down.