MIL won't eat

[Faranth]

Has anyone got any recommendations of what we can do to get MIL to eat?

She's mid 80s, has just been diagnosed with Alzheimers. She's been struggling to eat for months, has no appetite and says she chokes. Now that Alzheimers has been diagnosed we've been told that trouble swallowing is a symptom. She's been prescribed Complan which she says is vile, and she refuses to drink it. I've just ordered some Fortisip and some Aymes cup. A soup type things from Amazon as I've heard that tastes better, and hopefully it will get at least some calories in her. I suppose if she does like it the next battle is to get that prescribed instead of the Complan. Her GP couldn't be less interested.

If she doesn't like the Fortisip or soup what can we try? We've been told no rice or bread as they're apparently the worst for choking. SIL says the paperwork for carers says she's on a 'mush diet' but they obviously only heat stuff up so SIL has been thinking perhaps baby food is an option? I'm worried it won't have all the nutrients and calories she needs but obviously it's better than nothing. I've been looking at meal replacement stuff online but none of it is high calorie. We're going to be lucky to get 2 or 3 Fortisip in her a day - that's still only max 900 calories!

She's 4ft 6 and size 8 clothes are hanging off her - I think size 6 would still be too big. She needs to eat, she's not going to survive much longer if she doesn't.

She's been assessed for care needs, has carers 3 times a day for meals and meds, but they can't force her to eat. She just pokes at it and won't eat.

She's got capacity, but she's been told she needs to move to a retirement type flat, not a nursing home but with a red button call system etc. She doesn't want to leave her current flat, I understand, it's her home. But it's up 2 flights of stairs and she has trouble just getting out of bed. It's a loft conversion with low ceilings and crap communal heating. It's completely unsuitable for her needs now.

She's so apathetic about everything. She just can't be bothered to eat, to get out of bed, to wear her hearing aids, to do anything, and the less she does the less she wants to do. We're 100 miles away. SIL is nearby but in ill health herself, is really struggling and is understandably frustrated that her DM won't even make the minimum of effort. And feeling guilty for being frustrated. She is returning to work next week after being off with stress. I want to take some of the stress and burden off her but don't know what I can do.

She definitely needs a dysphagia assessment from a speech and language therapist. The gp should arrange this or phone up slt dept at local hospital and they will tell you how to arrange the assessment. Face to face dysphagia (swallowing) assessments are still happening. Then you will know what she can safely eat. Thickened drinks, mashed pureed etc. You will be told exactly and your self or carers can be trained. The gp will prescribe thickened or whatever else is needed. Once you know what's needed it would be a safeguarding concern if carers keep just heating up random ready meals. Things will change over time and sadly mil is likely to need physical help with feeding later on. It's really hard. You can't make her eat of course and no one is going to force feed her. Eating the wrong (or even the right) things will likely lead to a chest infection and this is how many dementia patients pass in the end. Please insist in professional help with feeding

Complan IS really gross. If you get the berry or vanilla one, you can make a simple sugar syrup 1/2 cup each water and sugar, bring to the boil until all sugar dissolved, then add in a tablespoon of gelatine powder (extra proteïne too!) . Add in an equal amount of frozen berries of your choice and let that boil for a minute or two and infuse the flavour. Blend the syrup when it’s cooled down. Strain the seeds out with a very fine sieve. Mix into Complan and refrigerate.

You could also look at Huel which is like a milkshake. Might not help, sorry

You can also add extra chocolate and simply set warmed complan with gelatine. A lot of Alzheimer’s patients just live on sweet food.

My mum had parkinsons which offsetted dementia also, she had exactly the same problem in that she had no appetite and choked on food. We stocked up on Complan and Nurishment and she had several of those a day.. It's not ideal, but it was something.

When my mum wasn't eating she really liked the nutritionally supplemented chocolate orange pudding pots. I think they were these ones
www.nutridrinks.co.uk/nutricrem-chocolate-orange-4-x-125g-

She didn't want to hear from the specialist. She doesn't want to leave her flat. She doesn't want to eat. She has carers 3 times a day and doesn't sound that engaged with them either.

If she's got capacity then it does sound like decline is what she wants, really. If you're 100 miles away, then once you're sure she's seen an SLT in case the issue really is just the swallowing, I'd focus your efforts on making sure that DH can visit her as often as possible and having a lovely time with her, because it doesn't seem like she wants to set herself up for more years of increasing dementia in a care home, and I think it's reasonable to respect that wish.

You need a speechie to assess her swallowing, to work out if she needs soft/bite-sized/minced/puree meals.
Then you can get a dietician in, to suggest calorie rich foods and supplements.

But you can't force her. I'm sorry, I know it's hard to watch.

Also, do you think she's depressed? Just what you said re she can't be bothered doing anything, and with Covid restrictions and isolation etc. Depression can cause lack of appetite too.

We had the same issue. She really does not need many calories .I recommend ice lollies made with fruit juice for hydration. Chocolate, Ice cream, yogurts and mousse. She is not being stubborn, she does not have any appetite and therefore giving her mush food won’t work. The eye appeal and smell of the sweet food may tempt her.

I can understand your fears about starving herself to death. My mum lived on long time on this very restricted diet. If I had known that sooner I could have saved myself a lot of stress.

It may be that she needs thickened fluids, too.

My mother in law went through this and sadly it was not long from the end. It took a family member who is a nurse to state how serious it was and stop faffing about making meals she wouldn't eat and get palliative team out to her ASAP. If she will take soup or ensure or ice cream or full fat milk then give her that every day as much as possible. But sadly she will have no strength at that weight. I wondered if my MIL was aware and gave her an element of control but who knows. Best to make everyone aware urgency.
I wouldn't move her until she needs hospice care just up her carers if needed.

She needs to be referred to SALT to check that her swallow reflex is safe. In the meantime give/ offer her semi solids ie milkshake, liquidised food and anything else with calories...dementia patients do generally go for sweet food...good luck.💐

Thank you all, I've read all the replies. I got a bit overwhelmed yesterday and couldn't reply.

She's never been keen on sweet foods, although she did eat some ice cream when we went up over Easter so perhaps that's changing. SIL is completely overwhelmed I think, and isn't doing so well herself so isn't making logical choices (still buying her skimmed milk for instance, because that's what she's always used), and because it's so illogical we don't even consider that she might be doing something like that until we find out by accident, as it were.

Being so far away means we can't do the day to day shopping, etc. I can't even order a shop for delivery without involving SIL as she'd have to be there to carry it up to the flat etc and it just makes it even more complicated than her doing it herself. Also, she's not my mother - I'm concerned about overstepping.

I have asked SIL if she's already had a swallowing assessment, but no reply yet. She was supposed to have a barium meal in hospital last time but they discharged her before it was done. I don't know if another assessment was done instead.

We are going up for 5 days to do the house move later this month, when we're physically there I can go and buy her high quality ice creams and stuff like that, then if she does eat it then at least SIL can just buy the same again instead of having to try to find things to try. Hopefully that'll take a bit more of the mental load.

I do feel for you. I had my mum, my stepfather and MiL all at the same time. I looked after them for 5 years and all died within a short time of each other. Although I could not say it to anyone else, I felt like I had been let out of prison when the last funeral was over. The mental stress became unbearable.

Please take care of yourself and, no matter how hard it seems, always remember that you and your SiL cannot do the impossible.

I had a wonderful Nursing Sister on the Dementia Ward. There were so many people sitting with elderly patients, trying to do their best for their relatives. The Sister said, ‘the body knows when to give up, all these things, like loss of appetite and lethargy are part of the closing down process”. She also said that the idea of letting someone starve death is horrendous, but it really not the same as when a healthy body is starving. The patients are not feeling pangs of hunger and do not suffer the effects of not eating.

My son's chinese girlfriend made some congee for my MIL who had difficulty swallowing after a stroke. It's a rice porridge that can be flavoured or bland as required. She made it with chicken broth and ginger. We tried it and it was actually quite yummy.

Can she still feed herself OK? If she struggles with cutlery (and pureed and soft food can't be eaten with fingers), this will put her off eating. She may need to be spoon fed by someone else.

My dad could be coaxed into eating soup and yoghurt from a spoon, patiently. Will the carers do this? This is not forcing, but encouraging.

He ate tiny amounts for the last year of his life, nothing really, but they need surprisingly few calories. It's important it's all full fat, real sugar not sweeteners, as each mouthful counts. I'd have been furious with sil for buying skimmed milk.

I'd not worry about telling her she has dementia. She'll forget that anyway, and it isn't a kindness to keep breaking bad news to them, each time like the first time for them.