Weight loss in elderly father

[dementedma]

Dad is in care with advanced dementia. I visited him twice during Covid - once outside on a sunny day and once trying to talk to him through a half open window. I noticed a marked deterioration in him.
Today the care home called and said he has lost 4kgs during the last month. he was skeletal before that! They have said they will weigh him weekly.
If this is the end, and the release he needs, I don’t want them badgering him to eat just to continue in this miserable existence. Is a dramatic weight loss a sign of the beginning of the end?
I can’t get in to see him. I can’t have him sitting outside in the cold and rain just to stare vacantly at someone he doesn’t recognise. What to do?

You might want to ask them how his mood is. If he's low in mood due to coved restrictions, not having visitors etc. It's having a huge toll on mental health of all ages. Also check if he's constipated or if he's having trouble swallowing. Is he sleeping too much and not awake for meals. Does his usual meds need review. Put him on weekly weights, make sure he has little and often high calorie foods, cream and full fat milk. Sweet things if he's not diabetic. Check his thyroid function. There's lots to be checked out by the GP who can refer to dieticians if needed.

Also he may well be approaching the end of his life but you need to know he has been reviewed by his gp and is stated on his notes. The care staff can then talk with you about how your dad can be most comfortable and without pain and distress.

Hes been put on weekly weights. I dont want them to keep him alive by feeding him fattening stuff. I dont know how his mood is. He didnt recognise me the last two times anyway so I dont think he knows if hes had visitors or not. The last visit was through a window which was awful. My sister has PoA but shes in London( long back story) so dont know what they'll tell me. We have a DNR and have stipulated end of life is to take place at care home, not hospital. I just feel so useless.

LPA doesn't stop you from knowing what's happening with your dad and talking to his carers about what makes him most comfortable. They can update you if they have informed the GP Who often do a weekly clinic at care homes. They tend to be by telephone at the moment though.

I don't want them to keep him alive by feeding him fattening stuff. If it's the beginning of the end, I don't think tempting him with fattening stuff will make any difference, he still won't want to eat much if at all.

GP might be willing to talk to sister (or you) over the phone. I've had very useful conversations with my father's GP.

My Mum was, given Ensure drinks . They are a bit like a fortified milkshake. She liked them but was never forced to drink them. Easy with a straw too.

Given his MUST score is likely to be 2 (high risk malnutrition) with 4kg weight loss in a month in an already underweight man, the care home will have a malnutrition procedure and Nutritional plan they need to follow to:-

• ask GP to review him- gp will likely prescribe fortified drinks
• arrange nutritionally loaded diet- adding cream etc to his mash and hot drinks, full fat calorie loaded doors and deserts

To have lost that amount of weight though, together with progression of his dementia, it sounds like he is losing his appetite and he may be near end stage of his dementia

Contact the home snd ask what they've done - what gp has done - as a local daughter who visits regularly you have right up know, even if it would be your sister who makes any decisions. They should be contacting her as she has health and welfare LPA since there are decisions to be made here regarding his health & welfare . Regardless of how busy she is, she has responsibility to be ensuring his health and welfare needs are being met in his best interests as his appointed LPA. (She can be removed as a LPA (it can become safeguarding if serious) -if she fails to respond repeatedly when she is only one appointed to make those decisions on his behalf. )

If the home hasn't done anything, then contact adult social services to ask them to follow up

Another note on Ensure....

My Mum lost huge amounts of weight and wasn't near the end, just had dementia and had lost interest in eating... and forgot to do so

Yes the care home will "fortify" his diet... what helped mum was lots of sweet milky coffees and we used to take in a bag of M&S/Waitrose "puddings" (like cheesecake, or creamy yogurt or creme caramel) each week..... and most of all Ensure Apple Juice.

Ensure comes either as rather sweet milky drinks - which Mum loathed - or a range of fortified fruit drinks. Mum will only drink the apple one and has two a day. They are brilliant. (Her GP can give him one of each to try - or easier, though cost me £15, I got a selection which the chemist ordered.)

So hard to know what's behind this especially when you cant visit... I've just given practical advice from my own experience above .... but most of all want to send you a hug and if it is the end, to wish you luck and not too much sadness along the way