Do I buy what she wants or just what she needs

[expat101]

Looking for suggestions, please. In May Mum weighed in at over 108 kilos and is 6 foot tall.

My Father died nearly 5 years ago, and since then, Mum has gone from using a walker to deciding she cannot walk so relies on a wheelchair. This was supplied by a rehab hospital after a fall to assist with her fear of falling.

Mum was diagnosed with dementia not long after Dad died (I'm aware he ended up being her carer) and he put into place with Mum's Doctor for the testing to occur if he didn't pull through an operation. However, it's not taking the ''normal'' path of forgetfulness, rather she goes through angry, lying, and abusive cycles coupled with periods of calm and pleasantness. If she doesn't get her own way, she becomes nasty, whether that is directed at me or nursing staff.

Because of her confinement to the wheelchair, she now lives in a private hospital. The staff are fantastic and the care is 2nd to none.

The staff have to use a large hoist which isn't the small lightweight frame type, but rather similar to a small bulky crane, to get Mum on and off the toilet (extra high chair already in place) and out of bed.

After the big weigh-in, I received a text from the hospital advising there was to be no more biscuits and chocolates, which I buy each week along with additional fruit and personal needs.

Mum claims she isn't eating dessert now (although was on the warpath when pavlova didn't make an appearance one meal time recently).

At the beginning of June, her monthly weigh-in was just under 108, so good news there however she has started to ask for biscuits again and now has decided she wants a bottle of sherry for happy hour glass.

Mum had a dietician visit her last year, however, she tells me she can eat whatever she wants, the hospital does not stop her.

I have refused to buy any more biscuits unless its a special occasion like Mothers Day and the sherry until the Doctor/hospital confirms that it is ok. Of course, their ok hasn't come through so Mum retaliates by saying she will go and get drunk on their horrible wine instead... (it's like negotiating with an under 5-year-old terrorist).

I have emailed the Senior medical officer which has been acknowledged asking for direction but she hasn't responded in full. I know they have other issues on hand than worry about this sort of carrying on, but it doesn't resolve the issue with Mum.

My family say I should buy all the chocolates, biscuits and sherry she wants and let her go to it. One of her Brothers is upset that she will do nothing to get back into some sort of shape, even if only to move on and off the toilet unassisted.

Mum is quick to email newspapers when she is one of her angry cycles and her emails do get published. I have a fear that one day she will go too far and be expelled from the private hospital where she lives.

The computer is the only form of communication she has with her family and I'm loathed to take it from her. She relies on it very much, reading overseas newspapers, links to articles my Uncles have sent her, seeing family photos roll around on screen saver etc. Once a month I have to fiddle with it to get it up and running again as she will crash or lose a programme.

I have had the mental health team visit her more than once, and her Doctor has her mental state re-assessed annually which shows further deterioration.

So that is my predicament. Do I buy the biscuits, chocolates and sherry or try to enforce a stricter reduced calorie diet even though she can eat what she likes at the hospital (I think they let her go for it in the name of less arguing and upset).

Thanks for taking the time to read... and sorry to off load.

How about you let her have them but in a restricted way ?? Sending in miniatures of sherry and mini, freddo sized bars ??

She’s elderly, she’s been through so much, let her have her biscuits for God’s sake! Let her enjoy the life she has left.

If you take the sherry in, do they hold it and give it to her? So they can moderate it?

I think taking alcohol into a private hospital for a patient who can be nasty, before they give the ok, is a very bad idea.

I very much doubt they let her have enough wine she gets drunk everyday.

Honestly, if the hospital let her have what she wants, then there is no reason to take in biscuits and chocolate. They let her have what she wants.

Clearly the stuff she is eating in addition to what the hospital gives her, was a lot because she has lost weight since it's been cut out.

It's a very fine balancing act. You need to speak to have a meeting with the hospital about all your concerns and discuss it with them.

I used to work in care home and we had some residents who couldn't be trusted with packets of biscuits, chocolates, etc as they had no self control and would eat the whole packet on one sitting. We kept these residents treats in the kitchen and were rationed out so for example in the evening when they were settled we would bring them a couple of biscuits with their hot chocolate or a glass of Sherry and a couple of chocolates! Can the staff not do something similar so she is still getting her treats but in moderation?

Look, I am the same weight than your mum but smaller in height.
Yes I am overweight but I would load anyone coming to tell me what to eat towards the end of my life.
It’s not because she is in a hospital that she suddenly has lost any ability to make decision for herself. And ensuring she is saying alive as long as possible might well not be her aim. Her aim might be to ENJOY her life instead.

What comes out from your post is how her weight and what she does is affecting you, the hospital staff etc... there is little about what she wants/likes etc.. Have you ever talked to her about it (maybe in one of her non angry phases)? Does it matter if she eats more chocs or has a glass of sherry? What will happen if she does? What are you REALLY worried about?

Btw I would thoroughly recommend this book about end of life. Yes it is in the US so not everything applies exactly the same way but it gives a very good reflection on what it means to get older.
Be careful about being accommodating to the hospital/the staff rather than fighting your mum’s corner.

@Passthecherrycoke Clearly it has made a difference because she has lost weight.

I would suggest contacting the newspapers with a copy of her diagnosis which should be enough to stop them printing any letters she sends.

I would take her treats but smaller quantities. A small box of nice chocolates or one packet of biscuits will make zero difference to her weight over a week. Sherry is a bit different as even a small bottle drunk in one go could put her at risk of hurting herself. If the hospital could ration the sherry I'd bring her that too.

I agree with creaking knees.

How would you like it if you kept being told you couldn't have things just because you can't go anywhere to get them.

The wheelchair thing is a bit of redherring, it's actually common in people with dementia to have non-physical mobility issues and being given a wheelchair indicates it's necessary and not just a whim.
She's got dementia. It's progressive and incurable. Her behaviour is a result of the disease (and an extremely common presentation). She hasn't all that long left and should be allowed some pleasures.

Does it matter if she eats more chocs or has a glass of sherry?
Yes it could.

If she continues to put weight on, they may say they can not provide care in that setting.

Unrestricted access to alcohol is also a bad idea. If she knows it's there and restricting access could cause her to be more angry and the staff have to deal with that.

My auntie used to smuggle whiskey into the home where my grandad who had dementia was. Leaving the staff in a situation of having to deal with drunk angry elderly person. That's not ok.

He was allowed a small drink in the afternoon from the restricted communal alcohol. But if he though the bottle there was 'his' and they werent letting him have it. All hell would have broken loose.

Eventually, for that other reasons that aunt ended up with only supervised visits, with the support of ASS.

Also people with dementia arent always frail. Both my grandad and my ex husband nana (who was a small women) seemed to get so angry their strength increased. My exh nana was so angry she couldnt open the washing machine she pulled the door clean off because she couldnt figure out how to open it.

Yes the OP mother is coming to end of her life. But there is also a responsibility to the staff caring for her.

I very much doubt the hospital is doing this just to mean to the ops mother.

She hasn't all that long left and should be allowed some pleasures.

She has pleasures. They let her eat what she wants. But they just dint want her having access to unlimited quantities of these things.

And its helping as she is losing weight.

I know she has to watch her weight but to take away ALL her personal treats seems really wrong

If she has access through the hospital to things like wine and pavlova, she isn't having treats taken away.

I'd give her what she wants. Who the hell wants to live a miserable, deprived existence for their last years.

Why is it important at this stage of her life to watch her weight/loose weight?

Having worked in care homes a BMI of 32 isn't that big. We were fairly regularly working solo (including all personal care) with people much much bigger, so I wouldn't worry about it getting to the point of her being bed bound. And even the flimsy looking hoists you see have a safe working load of about 180kg from memory (you get ones that go all the way up to 500kg!)

In terms of dementia - the idea of someone getting pleasantly muddled, then slowly forgetting who people are isn't a form I've seen personally (though it does exist, my experiences are skewed by working in institutions). I far more commonly saw what you describe - people getting aggressive, personality changes, becoming demanding, mood swings. Quite often people feel "something" think it's hunger so eat, forgetting they've just eaten. Food also gives a lot of routine to a life. When you can't remember what time it is it or where you are it can be comforting to sit at a table and see breakfast appear.

The hospital are also potentially not able to restrict what your mother eats if she has capacity (which is why they've asked that you cut her off - if the food is there they cannot restrict it).

It sounds like this has all been incredibly stressful for you. I think it would be worth sitting down with the staff of the hospital (she should be having fairly regular "review" meetings) and discussing what the options are - both with regards to her weight and her future care options. It's important to find out if this is likely to be a "home for life" for your mother.

She obviously became too heavy at 17 stone to pull up on the hoist every time she needed the toilet or bathing. In this case i think they were right to say no more treats. Im sure she has an enjoyable 3 meals a day. Now she is 15 stone, that is much better but that proves the treats were making her put weight on. Its not like she can exercise to burn it off. I would only give her treats on her birthday, mothers day and Christmas. Otherwise if she gets too heavy the staff won't be able to physically pull her up in the hoist. Then what will you do?

he put into place with Mum's Doctor for the testing to occur if he didn't pull through an operation.

I'm not sure it works like that. Your mum has to consent to testing.

Why is it important at this stage of her life to watch her weight/lose weight?

Er, because she's being looked after by carers, who have to use a hoist to move her from chair to bed to loo, and if she gets much heavier they won't be able to lift her??

How bad is her dementia, really, OP? If she's compos mentis enough to write letters to newspapers, it doesn't sound bad at all. And if that's the case, you should be able to sit down with her and talk to her about her diet. If she then gets nasty with you, I'd say that's a personality issue, not the dementia.

Agree with others about stopping taking in your own chocs. Let her eat what the home provides. Meals should be planned for each resident, and I'm sure they can come up with some low-fat desserts for her so she feels she's having treats but she won't put on weight.

Please disregard contacting the newspaper and advising them that she is mentally ill. That could get you into all kinds of legal trouble for breach of privacy if your mother objected.
Often people with dementia crave sweet foods - especially “little” things like biscuits, sweets or little cakes. They can’t self-regulate, and can’t be expected to think or behave rationally. I think that’s what you need to remind yourself.
You need to check your expectations of what the hospital staff can and can’t legally do regarding the junk food. I don’t think they can stop her eating it if other people bring it. You can just keep telling your mother that “It’s on the list to bring next time.” and keep forgetting to bring it. You speak in kilos, which makes me wonder if you are not in the UK. A lot of what people will advise will be based on UK aged care and may not be relevant if you are in another country.
Of course you are aware of the health problems she will undoubtedly run into as a consequence of her weight (she already has to be hoisted!). Her immobility brings with it an increased risk of pressure sores and infection, etc... then there is diabetes, etc...
This will be the hospital’s primary reason for your mother’s need to lose the weight - not to mention the greater staffing requirements. What you can’t expect is for her to look at this in a rational manner. She’s not going to re-develop the capacity.
Ultimately it’s your decision to bring in treats or not. Sounds like there are probably enough at the hospital. Maybe bring in a single, wrapped biscuit or a piece of cake if you feel guilty?

I would request a meeting with the hospital again to discuss it. Difficult question but what’s your mums life expectancy? We allowed my Nan sugar and just have extra insulin as she was slowly dying anyway.

I feel for your mum having so little control over her life and having others decide what she can and can’t eat but do think when ever I see the programs on super morbidly obese people I wonder who is buying them all that food.

Can some middle ground be found? A miniture sherry once a week? Those hotel packs of biscuits and she’s given a pack a day? It might make a bit less of an issue if staff can say that she’s already had today’s biscuits or that she can have them later etc than a blanket ban

@ComeAndDance So the staff can actually care for her perhaps. Imagine having to hoist someone every single time they needed to go to the toilet.

I'm sorry OP this is so hard to deal with :( My dad ate pretty much only cake in the last months of his dementia/parkinsons riddle life. We just let him get on with the things that gave him joy, but despite being 6'4 he was very thin at the end so weight wasn't so much of an issue. Plus he stubbornly insisted on using a walker when he should really have been using the chair so opposites perhaps.

I would listen to the hospital's requests, they are the ones with the day to day care, then take in treats for special occasions.

Aren't there other things you could take her that would bring her pleasure?

Like flowers, nice fruit, a really nice cordial, smellies etc? That way you're doing something nice for her, without piling more weight on.

She isn’t absolutely humongous, especially not at her height, she’s also very sick so I definitely wouldn’t hesitate in giving her all of the chocolate and biscuits she requires.

Surely she is an adult and can decide for herself?