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.

@WinterFrog good morning!

That is very difficult for your DM (and therefore you) that she still believes she is going home. How is her concept of 'home'?

At some point my DM's concept of 'home' became a conflation of her childhood home and her bungalow. Now the bungalow has faded away and 'home' is now just her childhood home.

If DM were to move back to her bungalow even with 100 carers she probably wouldn't accept it as her home.

DB is still being difficult about getting a capacity assessment for DM. He is quite happy with the way things stand as it means he can control DM's finances. I have said he runs the risk of being accused of fraud as he is impersonating DM but to no avail. He huffs and puffs and gets cross. For an intelligent man he is remarkably stupid.

DB has raised his issues about staff attitude to DM (or his perception of this) to the care lead. I think his real issue is that they aren't defferential to him. He forgets that he is just a visitor.

He has muttered something about moving DM somewhere 'better'. I pointed out that the particular place he mentioned (more convenient for him) doesn't provide nursing care. Cue more huffing and puffing. Any road I will leave him to it. If he thinks there is somewhere better he can sort moving DM. He won't as that will mean him taking responsibility for something practical.

Sorry, morning rant after speaking with DB last night!

i don’t know if the nursing home lets you do this but we find if we take some lunch in for us and sit chatting and giving mum a hand then she eats better. Also we bring her treats she enjoys such as chocolate and crisps! Anything is better than nothing. We leave the chocolate broken into pieces in a cup/bowl on side table in her room where if she is in her chair she can reach it

Also have problems with the any sort of conversation now. But I think she is just happy to have us there i have also resorted to reading her paper and discussing what’s in it etc.
Is there entertainment in the home? If I can bear it going when they have music or a singer etc passes the time and she loves it

@AInightingale unfortunately all the nutritional supplements DM has been offered have been types of milkshake which DM won't touch.

@lazymum99 the problem we have is that DM can't move herself at all. She is now even struggling to sit upright in her wheelchair.

DM is getting out of her room down to the main lounge, where she meets up with other residents for a chat. This has to be orchestrated by DB or me as there seem to be rules about care workers moving residents between floors. It's understandable, DM can't be just deposited in the main lounge. She needs to be checked on very regularly.

I don't really understand the rule about care workers moving residents between floors. To me that is their purpose. In fact I always get a carer to do the moving when I am visiting they are trained for that. When in the lounge is there not at least a carer(s) wandering in and checking most of the time.
However, I have ended up calling a carer for another resident when I have been a bit worried about them. I’m probably not very popular!!

I’ve just reread my messages and it sounds like I’m there all the time. Actually I only visit once a week I’m afraid.

And she does regularly tell other visitors that she hasn’t seen me for months 🤷🏻‍♀️

When my mum was still verbal she informed me she was going home to Scotland. She left Glasgow in 1946.

@PermanentTemporary similar I guess, DM grumbled to me that her parents had put raw onion in the salad she was eating which they know she doesn't like.

DM is 85.

I think she gets comfort from thinking of her parents as being still around.

The issue is that DM is now under the care of the nursing unit within the care home. The nursing unit has its own care workers, probably with more/different training. If one stayed downstairs to be available to DM then they wouldn't be available for other nursing unit residents.

If DB or I take DM to the lounge, she has to stay in her wheelchair but we have taken responsibility.

Is there not a lounge and dining room in the nursing wing?

I know how hard it is to stop trying to make things better but is your mother content? Sometimes that is all you can ask for. Things may not be perfect or the way you would want them but any move know would probably distress her even more.

@helpfulperson the nursing unit does have lounge and dining room. The lounge doesnt seem to be well used. An awful lot of the residents in this area arent able to make use of it because of their condition.

It is difficult to know if DM is content. She picks up on the mood around her. I try to be positive and cheerful with DM and she does reflect that.

This is all such a minefield! I think brother is your main problem @GnomeDePlume Your mum is probably as content as she's going to be. I wonder if you need to just to what you can, and are responsible for, and let brother do his thing.
I came across Mel Robbins and the 'Let Them' theory somewhere on these boards recently. I listened to her on a podcast, and she's got a book out as well. I think you might find it useful 🌻

My mum is well aware of home, and she still means her own home. What she's failing to process is that she's not there because she wouldn't cope. She believes she'd be ok because she had good coping strategies before her hospital admissions. She's very clear on what and how she would do things, such as commode by the bed. She knows she can't get up unaided at the home, but believes she'd be able to at her home. She's talking about cooking and gardening again. What an amazing positive attitude though!
She'll still argue black is white on other subjects too, so I agree with her mainly. It's a bit like a conversational quickstep.

Just caught up with this thread. Re the rememberingredient who is going to / has visited when we visited one home there was a resident who was constantly asking staff if he is having a visitor (he asked the person showing us round). They'd given him a small diary he could keep in a pocket and family put planned visits in it so whichever member of staff could ask for his diary and tell him who is coming and when even if it was just am/pm.

@WinterFrog I so recognise what you say about your DM believing everything would be fine at home. My DM couldn't stand unaided but somehow this would be better at home.

I suppose that this belief comes from a sense that everything went wrong in hospital so if they could go home everything would be fine again.

DB is a problem. His constant carping and negativity does get me down. I do believe that DM picks up on this and reflects it.

I snapped at him today when he managed to criticise something I had bought for DM despite having not actually seen it. He wants other people (including me) to do his bidding and at the same time he wants to complain about what they have done.

I will look at and think more about the 'let them' approach and work out how to apply it in my dealings with DB.

@countrygirl99 we have a very simple planner now for DM. The idea is to provide prompts for the people who are caring for DM. She also has a dementia clock which DD gave her. Unfortunately her eyesight is very poor post stroke.

Good ideas!
I hope you find peace around your family situation @GnomeDePlume It can't be easy. My brothers are quite sweet and thankfully not bossy, but they are mother's golden boys and just leave everything to me.

Mum was on good form this morning so I had a nice time with her. It's always been a bit hit and miss, our relationship. Like Forrest Gump's box of chocolates.

@WinterFrog that's nice that you had a good visit with your DM.

Do you find yourself getting stressed in anticipation of a visit? I know I do. I'm worrying about how the visit will go. What sort of mood DM will be in. Will she be happy, sad, angry.

Afterwards I get questioning from DB which sometimes feels like an interrogation. Has DM been into the dining room, did she eat, have we been to the lounge.

Anything I report back tends to have a negative spin put on it. Anything I provide is met with doubt or disapproval in some way.

DB's own messages post visit are filled with criticisms of the staff. DDs visiting us yesterday say he is looking for me to either argue back or totally agree with him. An alternative opinion is dismissed or he wants to argue it down with his 'intellectual superiority'. My responses to his messages now are very neutral.

DB can't/won't accept that DM has dementia. He has convinced himself that DM is curable. His latest theory is that DM has PTSD and that her decline since the initial leg fracture stems from her not having been 'properly treated'.

What form 'proper' treatment would take is anyone's guess. However, knowing DB's outdated views on a number of topics, I can imagine ECT would feature, along with some good old fashioned punishment level physiotherapy.

DB has conveniently forgotten that DM's cognitive decline has been going on for some time. She was able to live independently before her fall because everything was familiar and she had lots of coping strategies.

The fall then the stay in hospital crystallised a lot of things. From what I have read, this is not uncommon. The fall, anaesthetic, infections etc may have pushed dementia on a bit but they also brought it into sharp focus. Confused stories, misremembered incidents, continence issues etc are much more obvious.

Any road up, today is another day. Best wishes to all on this journey.

🌻🌻🌻

Morning! @GnomeDePlume I'm actually less stressed about visiting now mother is in the care home. I am sorry it's so difficult for you. We are fortunate in that mine is still well enough to enjoy the company of carers and other residents. I think you are in a really difficult position with all the health issues your mother has/is facing, and with your awkward brother added on top 💐
Similarly to yours, mum's cognitive decline was evident but she also had coping strategies at home. She had managed to convince her daily carers that she was sharp as a tack, and so they didn't see the same risks as I did ( brothers and I also felt that they didn't believe us - and same for other medical professionals)
I'm finding it comforting that the care home staff do see her more clearly, but they also know how to manage her and keep her feeling reassured and safe. She does seem to be drinking more, thankfully ( also point blank refused fortisip, like yours)
My mother's situation could so easily have mirrored your mother's. At the beginning it could have gone either way. It's just the luck of the draw I think. Sending my best wishes!

@WinterFrog I can see why you would find yourself DM being in a care home less stressful. That makes sense. It must have been frightening and frustrating to know that things were starting to go wrong but to have the professionals unable to see what you were seeing.

DM is currently enjoying some good days. I got DM a new cushion for her wheelchair and that seems to be helping with the pressure sores.

DB actually apologised for criticising it before seeing it. Wonders will never cease!

My comment to DB has been that DM's condition both in body and mind is about as predictable as the weather. Just enjoy the good times.

DM's moods are very much absolute now. If something is wrong then everything is wrong. It can be difficult to work out what the 'something' is as I'm not sure she herself always knows. One day her catheter wasn't draining properly, another day she had got her wedding ring stuck on the wrong finger.

I like your spin on things @GnomeDePlume I'm fairly certain my mother's less good days have a reason too. I wouldn't be surprised if she's still having small TIAs ( has a history) One of her comrades at the home recently passed away quite suddenly, and of course that's upsetting too. She's missed the funeral of another friend, and it's been quite a year of losses all round. It must be terrible to face your own mortality like that, and I have a lot of sympathy for her, but I still get that kick in the gut feeling when she snaps at me. It doesn't last though. When something's wrong, everything's wrong does sound familiar. It's quite nice to be able to step away, knowing that she's in safe hands, and that tomorrow is another day.
Those wheelchair cushions are good aren't they? Mum's had a cut away piece where her coccyx goes, which is helpful as she has a bony bum now.
Great news that brother gave you an apology. Wonders will never cease! You're so right about taking each day as it comes ( applies to brothers and mothers!)
🌻 🌻

So it’s fun and games here. I’ve come to visit my parents for the weekend and help out with a few. It’s and pieces and within an hour of arriving my dad had a very scary episode that seemed like a stroke - he was slurring and incoherent, couldn’t stand or lift his arms. We mended up calling 111 who said they were sending an ambulance, so now I’m sat at A&E waiting for him to be admitted.

Naturally he’s rallied and is almost back to his normal self, but the paramedics want him to get a scan to make sure it wasn’t a TIA.

Hope everyone else has a quieter weekend!

@CaveMum , that sounds horrible and scary. Plus A&E is one of the circles of hell. I hope your DF is able to be admitted quickly.

🌻🌻

Thanks @GnomeDePlume in the end we were in A&E until 9pm. They did a variety of scans and tests but couldn’t find a reason for his symptoms, which naturally had resolved completely by the time he was seen. We were discharged with a referral to the TIA clinic (though nothing showed up on the CT scan) and that was that. A very long and stressful day - I was up at 6am to drive the 3.5 hours to visit them and we didn’t get back to their house till 9.30pm.

I stayed the night, as was the original plan, and then left them at midday to come home as DH is away with work for a few days from Tuesday morning so I need to be here for the DC.

We’ll see what the next few days/weeks bring, but it was bloody terrifying- I had a good cry on DH once the kids were in bed this evening.

@CaveMum and now you are left on tenterhooks wondering if it will happen again.

A&E is a horrible place for anyone but worse for anyone with any sort of processing issues. The noise, lighting etc all make for a horribly confusing and distressing environment.

A quick catch up.

We had a couple of weeks of peace bar getting phoned late one night because DM was refusing to go to bed. It turned out mum believed someone was hiding behind the curtain.

Got the carer to wheel mum round so that she could check everywhere for herself. This done DM went to bed quite happily.

Then yesterday I got a message from DB to say that DM was seriously ill. Initial thought was possible stroke. Ambulance called. Eventually turned out to be a major hypo. Glucose then food administered and DM recovered.

I swear that DM is planning to outlive us all by frightening DB and I into an early grave.