Where do we go from here?

[GnomeDePlume]

Up until 4 weeks ago DM(85) was doing fine. Lived alone in a bungalow with family member close by calling in regularly (most days) for general chit chat.

Then she took a fall and broke her leg requiring surgery.

In these 4 weeks DM has declined so much. Her short-term memory is shot. She has stopped eating, she still chooses food but then just pushes it around a bit without managing more than a mouthful. She still drinks water but isn't interested in any other drink (she used to be a big tea drinker).

DM is now in a ward waiting for discharge to another hospital where she will do some physiotherapy.

It all seems too little, too late. She isn't getting out of bed. Her world has shrunk from bungalow, well tended garden, clubs, to the tray over her bed.

Is there any coming back?

I'm not sure what answers I'm looking for. It all feels a bit miserable at the moment.

@Anjo2011 thank you for the good wishes.

The problem for DM now is that she has no reserves. Physically she is very weak which means she can't even shuffle in her chair to get a bit more comfortable.

Having said that DM did manage to roll herself out of bed and onto the floor last night.

No harm done but DB is grumbling about wanting side panels on her bed. He has given up on wanting side rails after I had pointed out the risk of DM getting a hand or arm caught and risking fracture.

I have now pointed out the risk of suffocation. The same reason as to why babies no longer have solid sided cribs or cot bumpers.

I shall be interested to see what he comes back with!

When my mum kept falling out of bed they lowered it right down to the floor so she could only roll out, not fall. Is this an option?

@Candleabra yes, DM's bed is lowered right down each night. Last night she rolled out, as she is close to the floor no harm was done. The only worry is that she has no strength so there is a risk of her getting herself into difficulties as she would struggle to move herself to a safe position.

This is the stuff they don't tell you about getting old, isn't it? I don't think any of us are prepared for this unless they've seen it before.
Continuing to send love and good wishes 🌻

@WinterFrog I think you are very right.

The thing I am finding more and more is the lack of 'definites'. There are few certainties.

But one thing I am sure of is that DM is in the right place. There is far more dignity for DM than in hospital or being cared for at home.

As you have said, there is no dropping and running with an elderly relative in a care home. DM still needs active input from DB/me. The same for your DM.

My MiL ( advanced dementia and in a care home) tries to get out of bed because she forgets that she can't walk. They lower her bed and have a crash mat on the floor. There are also alarm pads on the bed and floor so staff are alerted if she attempts to get up by herself.

@KnottyKnitting my DM is getting up for similar reasons.

She has her bed lowered to the floor and crash mats are coming.

DM is waiting on a capacity assessment so at the moment the home can't use the sensors without her consent (which she declined as she didn't need them).

DM is still horribly tired. DB has an aversion to allowing DM to have an afternoon nap in bed. Doesn't see it as 'proper' or something.

Anyway, I got to do an afternoon visit yesterday so DM happily napped in bed while intermittently watching a bit of a Ruth Goodman history programme. Then towards tea time I gently woke her. Went into tea perfectly happily.

Does your brother see a nap in bed as 'giving in'? I have a friend who is inclined to say things like that.
My mum probably thought there was something quite decadent about it come to think of it. Ditto daytime television.

My immediate family ( DH and adult kids) love a nap!
Your poor mum. It's all happened so fast! No changing your brother now of course. You mum's being well looked after. Make sure you keep looking after you. How's relationship with your brother? Mine seem to need some support from me at the moment ( both are long term single) I'm very fond of them and this has thrown them both for a loop I think.
🌻 🌻

If she's getting up and going to tea, I'd take that as a small win. It's movement and engagement with food.

I certainly plan to have afternoon naps - in bed or wherever I like! - when in my later years. If that's what your mum wants, why not? My dad had always enjoyed his food and one of the treats he liked in the last few years was a bacon sandwich (got a George Foreman grill in so carers could do it more easily) - I had some comments about healthy eating from certain quarters but I felt that as someone approaching ninety, it was a bit late to worry about that and I'd rather he ate food he enjoyed.

Sounds like you had a decent afternoon with your mum @GnomeDePlume and I hope you can have more. Make sure you take care of yourself and get enough rest too. It's all stressful even when it's going fairly well as you're often just bracing yourself for the next issue.

@WinterFrog I think you are right. He sees having a nap in bed as a step towards DM 'taking to her bed'. DB isn't reconciled to the idea that this is DM now. Old people sleep a lot. Having a nap isn't 'giving in'.

DB isn't good at dealing with practical matters. He is very bad at interacting with the care team at the home. I don't think he realises just how rude he is to people.

@Holesintheground my take is that DM is far more likely to generally engage with things if she is better rested.

We did have a pleasant afternoon. DM watched a bit of television, napped and chatted. All very civilised!

@WinterFrog My DM is very much of the same view inasmuch that it was deemed totally unacceptable to have a sleep in the afternoon! She would say what a waste of a day; now she naps on/off all day long. MIL is complete opposite and would vocally look forward to getting back into bed at around 2pm!

@GnomeDePlume my brother was the same when speaking to the care home staff when DM was in there...so rude to them, he would talk down to them, he would have a very patronising and condescending attitude to everyone in there. (don't wish to derail but we no longer speak (which is very much a good thing!) so I've no idea what his views or attitudes are anymore. He doesn't see our parents anymore. Sad for our parents but probably for the best given his horrible attitudes towards people in general.)

Glad to hear you had a nice afternoon with your mum. It's a shame you have the spectre of your DB kicking off at any given moment though. Makes a difficult time even more difficult.

DB has informed me today that DM is 'lonely and miserable'. I am supposed to sort this out.

DB thinks I should visit after work (the very earliest I can get to the home is around 6.30). If DM is asleep I can wake her up.

All this stems from DM not being taken into tea today and having her tea brought into her room. I don't know why this happened, allegedly DM was encouraged to stay in her room rather than go into the dining room.

It is perfectly possible there were good reasons for this. DB didn't ask and is assuming there is some sort of conspiracy to keep DM in her room.

So tomorrow I will phone the home and ask and gently remind the care lead if DM can be encouraged into the dining room as she doesn't like eating in her room.

TBH I think the person who is lonely and miserable is DB. DM takes her emotional temperature from DB. If DB is cross or upset about something then DM gets cross and upset. DB seems to be entirely incapable of doing jollying along.

I know there are standing orders about killing one's brother but surely there can be extenuating circumstances?

@GnomeDePlume honestly how about not calling the home? If your brother asks, say you forgot (or straight up lie and say you did). Or are you trying to prevent him calling them? It sounds so pointless. I'm.assuming once I go into a home I'll want to eat in my room, why would I want to go to the dining room at that stage?

Why can’t he say something if he feels it’s an issue. I agree I wouldn’t be ringing them to ask but you can always query if you feel
you need to on your next visit.

I didn't explain the dining room business very well.

DM likes eating in the dining room, not in her room. Food brought to her room is likely to be left untouched. DM needs the social cues of eating with other residents to encourage her to eat anything at all.

Yesterday, DB believes (he was there) that DM was being encouraged by her care workers to stay in her room rather than be moved into her wheelchair to go into the dining room.

This then meant that DB and so DM slipped into a slough of despond.

The whole thing was, I suspect, a problem with communication. The staff are keen to encourage all residents to make their own choices. DB does not come across well when he communicates with staff and possibly comes across as bullying DM.

DM is a people pleaser she is also now very reflective of the emotions and atmosphere around her. She isn't yet used to the change in 'social rules' especially compared to hospital. In hospital, patients do as they are told and have very little free will. In the care home, residents are encouraged to make their own choices.

Problem is that, now, DM is often not sure what she does want or possibly isn't comfortable about expressing what she wants. She doesn't want to annoy the staff, she doesn't want people to be cross with her.

I do wonder if this is fairly common where people have had extended stays in hospital. Out of the last 19 weeks DM has spent 15 weeks in hospital doing as she was told.

I will phone the home to see if I can talk this through a bit with the care lead. They will have experienced this before and may have some suggestions. DB would be useless at asking their thoughts because he doesn't consider them as being worthy.

@GnomeDePlume I hope it helps you that there are people on this thread/board who hear you and understand! Not just with your mum but with your brother. Being expected to be the fixer is something i understand only too well.

@PermanentTemporary and @Anjo2011 have got a point.

I imagine your mother is being offered choices in the home. I was with mine yesterday when a staff member came round and asked her where she would like to have supper. She usually chooses to meet her new friends in the dining room, but occasionally stays in her room.

I love the sound of your Sunday afternoon with mum 💕

@GnomeDePlume we cross posted, and that makes perfect sense to me. I think you have an excellent nose for what's really going on.
There's a little cafe in mum's home, and I stopped off after visiting her one day. I was clutching a cup of tea and probably staring into space. The receptionist came and asked if I was ok, and i told her I'd found the whole situation just a bit much that day. She was very sweet, and said I wasn't the first, and I was welcome to stay as long as I needed to, as they aim to look after whole families. I felt very supported in that moment ( and lucky that we found a nice place)
Sending hugs ( Wish we could have a coffee or shout at the sky together. I'm sure it would help!)

@WinterFrog you are absolutely right. I am expected to be the 'fixer'. DB stomps about, treading on people's toes, upsetting them. I go in afterwards, smiling, saying thank you, generally pouring oil on troubled waters. And dealing with any practical issues.

Sounds like you have a similar family dynamic.

DM isn't comfortable with saying what she wants. A lot of her delirium dreams centred around her being 'in trouble' for voicing an opinion.

@WinterFrog it is a lot to take in isn't it? So much change in such a short space of time.

I feel a bit like I did when DCs first started school. 'Will they be happy, settle in, make friends'. How much do I need to involve myself in day to day issues? In fact starting school was easier because DH and I were a team. Now I'm harnessed with DB who only wants to be a team if we are pulling the way he wants.

I wonder if the staff member who came in found your mum in a more tired/less responsive mood, perhaps said 'would you rather have your tea in here today?' and your mum then went with the cue of what was 'expected'. They are generally pretty skilled at coaxing people into the dining room but will also be on the lookout for people who might be having a less good day and need to be left.

It's fine of course to enforce your boundaries with your brother when he goes into bossy mode. Easier said than done though too 😔 The point I might make to him is that it's a marathon not a sprint now, and one day's events are not something to over react to. Your mum isn't lonely and miserable on the basis of one day of staying in her room and you shouldn't have to jump to it on that basis. At the same time there's no harm in you having a more adult, diplomatic conversation with your mum's carers, when it suits you, about the benefits for her of always being encouraged to come to the dining room whenever possible.

@Holesintheground what a wise and insightful post.

@GnomeDePlume I think negotiating with toddlers has stood us in good stead for the trials of later life! Family dynamics are the issue here aren't they? Other People ( those not related) are generally easier to manage 🌻

@Holesintheground yes, I think you are right. DM is very conscious of not wanting to be 'told off' for making the 'wrong' choice or having a different opinion.

It occurred to me that DM has spent a lot of her life being told what to do. Her own parents, DF (who truth be told was a bit of a bully), supervisors at work and now DB. Being allowed to choose for herself is probably confusing and a little frightening.

@WinterFrog you are right about having to deal with the family dynamics!

Any road up I spoke with the care home. Explained about DM not wanting to make the 'wrong' decision and being worried about being 'told off'.

Also got told that DB sitting straight outside the dining room is distracting DM from eating her lunch. I have passed that on to him!

@GnomeDePlume as always lots of sensible and considered responses. You are doing a wonderful job advocating for your DM as is everyone that is in/has been in this situation. Sometimes it’s good to just offload. I think there will be continued twists and turns for you as a family but you can only deal with the here and now and you are doing brilliantly. Sending good wishes as always.

@Anjo2011 Thank you

And thank you to everyone who has offered excellent advice and different perspectives.

This is all new for us as a family. DB is doing his best but the whole situation wrong foots him at every turn. His normal coping strategy is to find someone to blame and then fulminate about them. This doesn't work when there is no one to blame.

DB not happy at my suggestion to wait out of sight of people in the dining room. I suspect he has huffed and puffed all the way to visit DM today but has probably done as suggested.

DM on the move again tomorrow this time within her care home. Being moved to the nursing unit, essentially a nursing home within the care home. The benefit of this should be to improve infection control. NHS or social services (I cant remember which) are funding the additional cost.