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.

@GnomeDePlume Is it a temporary move or more long term? I’m sure this will work well as there will be less chance of trips to hospital and the cycle of being in a&e and then admitted. How are you feeling about it? I’m sure your DM will be well looked after and this will be a relief for you.

@Anjo2011 I am glad DM is moving as hopefully it will reduce the risks of infection. This is another reason for being glad we chose this home as this has been an easily managed move.

DB is happy as to him it means DM will be better 'supervised'.

I think he is slightly disappointed DM will have her own room. He did come out with the classic quote 'I think DM is more suited to a ward environment'!

Sorry @GnomeDePlume but that made me laugh - no one is ever more suited to a ward environment!! I hope she settles well in her new room. Mum is now in a nursing home and she’s so much better than she was in hospital. The staff are great, her bed sore is finally showing signs of healing that it just didn’t in hospital, they’ve successfully treated a chest infection and put her on a new pain management regime. We still have a lot of issues to overcome, but medically I can’t fault them! Also, despite asking multiple times in hospital, she’s finally been referred to mental health services for support!

@Randommother I'm glad your DM is settling into her nursing home and reaping benefits from it.

I think nursing homes can offer something hospitals just can't. Hospitals are focused on treating whatever the specific medical issue is but the second the patient no longer needs acute medical intervention they are moved on.

My DM isn't going to get better. Hopefully the nursing unit can help her to improve life now.

Does anyone have any suggestions for this problem please?

It is becoming very obvious that DM's memory is pretty much shot. DB visits her every day except Sunday yet she forgets that she saw him yesterday, forgets she will see him today and that she will see either him or me tomorrow.

This means that DM gets very despondent until a visitor arrives in the afternoon. Unfortunately this means that DM is often too miserable to go into the dining room to eat lunch. She gets her lunch brought to her in her room but isn't interested.

Is there a way of reminding DM she had visitors the day before, will have visitors that day and will have visitors the following day?

I was thinking some sort of simple flip file. Perhaps asking that her carers read it out to her.

Is that a daft idea?

Hi! How about a white board? The days of the week with who's been/who's coming next?

We have a diary with a week to a page and pictured so only one week shows at a time. In it we write who is visiting which day. Normally during the visit we add anything of note we did or talked about.

This means staff can use it as a prompt. So she is upset in the morning staff member can show her the diary and say ' that's nice DB will be in after you've had your lunch.' Or if she says noone ever visits her they can say 'look Gnome was in yesterday. Wasn't that lovely to see the pictures of little gnomes prizgiving'

Thank you, yes it needs to be a prompt for someone to read it out to DM. Her eyesight is now very poor since the stroke last year.

That's a good idea about leaving space to add any thing extra to remind DM of what has happened or what will happen.

I want it to be something that isn't too functional in appearance.

If the staff can see your routine from a diary/ whiteboard, can they in the morning say 'Gnome is coming this afternoon and she was asking if you were going to eat a good lunch. She'll be pleased if you do. Why don't we go down to the dining room and see what's there?' Play on your mum's desire to please or do the right thing - for good reasons..

Yes, we definitely need to get the staff involved. I will try and work something out.

We used a white board with my DF ( with yesterday, today and tomorrow visitors written on it. )

We also bought a little Polaroid camera and took pictures of him with visitors and wrote the day on it so he could see who had visited. Helped for a while

What beautiful ideas! My mother is still able to look at her diary, so we've taken to writing in that. Did you fill in an 'about me' book when she arrived? We did ( although it's disappeared) and it's good for starting conversations with staff. I definitely think it's wise to connect with staff over these things. I've found they do things if asked, but otherwise simply deal with care needs. It's taken us this long to work out who is responsible for what as that's one thing nobody really explained at the beginning. It's got easier as we've got to know the team, definitely. I've recently got mum put on fluid watch, as she gets much more woolly when dehydrated. The carers use an app to log what she's drinking. She always has water beside her but doesn't drink it without a prompt - and then often argues because then she'll need a wee, which bothers her in case she doesn't make it in time, or like your mum @GnomeDePlume, doesn't want to bother the carers. She's in pads, but old habits die hard!
Continuing with the solidarity for you and all on these boards 🌻

@WinterFrog you are right about the drinking. DM only remembers if prompted and if tired has to be helped to drink.

DB and I are both a little bit concerned about the standard of care DM is receiving in the nursing unit. DB found DM having fallen off her bed when he arrived. Not hurt but evidence suggested there had been no plan to take her into lunch.

Of course it is perfectly possible DM had refused to go into the dining room and had chosen to stay in bed. If so that may be mood related.

The difficulty is that DM has a whole new care team so of course everyone is getting to know each other.

God, this is so complicated!

Is there not a crash mat with an alarm next to her bed? That would seem to be a given for someone who needs her level of care. I wouldn't be happy about that.

I nearly fell out with mine over fluid intake today. Despite the staff allegedly monitoring, she's clearly drinking very little. And then she makes poor choices. There was an old looking glass of water on her table today alongside half a cup of cold tea. We had a cup of tea together, but i was encouraging it all the way, much to her annoyance. I cleaned and refreshed her water and gently reminded her it's important to drink it. She said it's a waste of time as it just goes straight through her. I did point out that her body needs to absorb fluid to function, and it'll 'flush her pipes' and keep her brain sharp, but she was having none of it.
I feel your pain with all the complications @GnomeDePlume 🌻

No, we asked but as DM still has capacity (as she has not been formally assessed, yet) the care home had to ask her if she wanted the alarms and she said no.

Capacity assessment rests with the GP service (in fact DM's own GP) but nothing has materialised as yet. It has been requested.

Same goes for physio of which DM has had, to all intents and purposes, none since the fracture back in September.

I think that some of the problem has been that every time something has been requested something else more urgent has cropped up.

@WinterFrog I totally empathise with the drinking issue. Just as a thought, have you tried other drinks than tea and water? Diluted squash or similar.

The capacity thing, despite all the good reasons for it, can end up really endangering people, I think. It's very frustrating when were trying to keep our loved ones safe, isn't it? When someone is clearly confused and muddled.
@GnomeDePlume very occasionally, if it's hot, I have been able to persuade mum to have a glass of cold lemonade with orange juice. She's not touched squash for years. She's so bloody minded independent and won't be told what to do. Fortunately she eats reasonably well now so does get fluid via soup, gravy, a bit of salad, ice cream etc. Won't eat jelly. I get it to a degree - she fears wetting herself - but she got very cross with me when i said if she gets a uti due to being dehydrated that isn't going to help her continence. I am much nicer to her than I sound when relaying it, really I am. I know her brain injury means she can't quite understand certain things, but the frustration is making me want to scream, as we're all just trying to keep her well and safe.
Peace and love 🍷

@WinterFrog on the plus side your DM will be getting a lot of fluid from her food.

But as you say, it is the ever present risk of UTIs. The consequent delirium is terrifying for all concerned.

Capacity is such a tricky issue. While the resident should be allowed to make choices I do notice that often the choice is presented very neutrally.

If there is a 'better' choice that should be encouraged. So getting up, washed, dressed, eating, drinking are all generally better choices than doing the opposite. Especially if the better choice will improve mood/health.

Having choice presented so neutrally, at least for my DM, doesn't help in the making of good choices.

'Would you like a drink?' is neutral and all too easily declined. 'How about a nice drink?' is more positive. The implication is that the person offering wants to provide a drink. Obviously tone is important as well.

Or better yet, 'I've made a pot of tea, can I bring you a cup?/Im having a tea, will you join me?' The implication being that the tea will go to waste if she doesn't have any, or that she's being mildly rude to refuse. That to me is cultural competence, because that kind of very gentle emotional blackmail is how offers from host to guest work in actually a lot of cultures, but certainly if we're talking older Brits that's how it is.

@PermanentTemporary exactly that! A little gentle social blackmail.

I think the staff are nervous of being accused of bullying residents hence the neutral questions. Unfortunately perpetual ditherers like DM then dont know what the 'correct' answer is.

Sorry, i was tired and a bit fraught last night. Yes, I agree that options are presented neutrally @GnomeDePlume It's an excellent way of describing it. I hope the system evolves to something @PermanentTemporary describes. I used to work in care and being able to gently cajole using such means was once considered a skill. More recently we were trained to be really cautious. I mean it's good, there were also carers who did just insist on washes and changes of clothes and i reported one for showering a lady who was screaming. That was the year the mental capacity act came in. It really needs to be handled with care though.

My mum respond well to my ' I'm gasping for a cuppa, shall I put the kettle on?' I like it being termed cultural competence.

Best wishes all round!

@WinterFrog I quite understand the fraught feelings. It is so difficult isn't it?

In many ways I feel that DM is gone. The person who is left isn't really 'her' if you see what I mean. I don't feel a lot of connection. We chat but not really about anything.

Today DB is banging on about DM not eating. She is in the dining room, she isn't interested in food at all. DB has convinced himself that the care home are starving DM to the point of collapse when she will end up back in A&E.

Also convinced himself that care home staff are rude and abrupt with DM. I have seen no evidence of this. They tend to be brisk but then they haven't the time to do the weadling and pleading with DM that he does and thinks is necessary.

Morning @GnomeDePlume how are you and mum doing? Have you got any further with the mental capacity situation?
My mother is much the same. She's great if people manage conversations but it's clear that her short term memory is seriously affected now. I'm wondering if she's still having TIAs. My brothers find her difficult to converse with her, preferring to just keep her company, watching tv or reading her paper. They visit less often now. Still a couple of times a week though. They aren't bad lads. Mum has a couple of favourite ( male) carers who are gently flirtatious with her and make her laugh. They aren't inappropriate at all, and it makes her happy. She's still talking about getting better and going home which really hurts my heart. She knows she wouldn't manage at the moment but is still convinced that she'll improve.

My mum is very hard to converse with now. I read to her a lot. Your brother might find that easier.

Isn't your mum on a weight management programme @GnomeDePlume ? We had this - it involves weighing the resident and giving them a liquid nutrition supplement. My mother had lost 6 kilos in 6 months purely for the same reasons you describe - classic 'anorexia of age' or just complete loss of appetite and interest in food - they started to give her the supplements and there has been a little gain back.