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.

@PotterHead1985 that is frightening especially when the cause isn't known.

💐 to everyone who is going or has gone through this most bewildering and stressful stage in life.

Many thanks for all the helpful comments and support.

Sit Rep re DM is that she has responded well to IV ABs. The threat of being turned straight back round to the main hospital has been removed for now. The issue still remains that DM eats very little.

DM's mental state is not good. She is very confused or perhaps more accurately she now resides in an alternate and kaleidoscopic reality.

The rehab unit are having a case conference about DM today. I guess the question is now the same as when I first started this thread where do we go from here.

I started this thread 6 weeks ago and I feel that we have just slowly spiralled downwards.

@GnomeDePlume, I’m glad she’s responding to the antibiotics and a trip to A&E is off the cards, at least for now. Have you had the results from the case conference today yet, or will you find that out tomorrow?

My mums ward is still on lockdown so I haven’t seen her, but according to the nurse she’s doing ok, I’m hoping they’ll lift the visiting restrictions soon.

Hugs to all going through this xx

Love to you and yours @GnomeDePlume Mine's settling in to her residential home now. She still believes she'll get better and go home, but thankfully she understands why she can't at the moment. She really needs quite a lot of care and it's highly unlikely that she'll improve by much.
The rehabilitation unit believed that she'd reached a plateau so they didn't apply for an extension.
Mum was fed through a tube for a while because she had swallowing difficulties so they had no option, but I'm sure that it made a big difference. Three months and several wards here, and when she left the last one she assured them she'd be popping back to visit 😔 There's still so much she doesn't really understand but she can cope with simple conversations. Nothing like the feisty and fiercely independent woman she was before.
Heartbreaking seeing the decline, isn't it? We've been very fortunate compared to some of you but it's still a rollercoaster. I think we're probably all very tired and I send my best wishes to all 💐

@GnomeDePlume sending good wishes to you all, I hope you now begin to see some progress.
We say a final farewell to my DM this week, six weeks after being admitted to hospital it will be her funeral. Still can’t quite believe it.
I echo others in sending good thoughts to all of you in these tricky situations. Take a moment for yourselves, you are doing your best for your loved ones.

@Anjo2011 💐

@Anjo2011 thinking of you, such a shocking thing to happen in such a short space of time. 💐

@WinterFrog I'm glad your DM is settling in to her new home. It is horrible seeing the decline and the speed with which it occurs.

DM was quite calm today and a lot more 'with it' than when I saw her on Sunday.

The worrying thing is that DM is seeing various things which aren't there or don't make sense. Some of this is that her eyesight has deteriorated quite markedly but the concerning thing is that she doesn't question these things.

@Randommother the result of the case conference is that DB and I will have a meeting at the rehab unit next week to discuss plans for what happens after the rehab unit. I am expecting that they will want to know DM's living situation.

I'm hoping that we will get some sense of what level of rehabilitation is expected to be achieved.

How are things today @GnomeDePlume? Mum's settling in to her 'new normal' but it's very clear how her cognitive processing skills have declined. She went through a stage of seeing things that weren't there but that has thankfully stopped now. She seems quite content, for which I am grateful!

@WinterFrog I'm glad your DM is settling in. That must be a relief. The decline is terrifying isn't it.

DM seems to be starting yet another UTI. She has only just finished a course of ABs and will be starting another.

The constant ABs must be impacting DM's gut biome. But then again she isn't eating much at all so it doesn't have a lot to work on anyway. DM is looking quite gaunt. She is refusing most food and also supplement drinks. DM has no interest in food plus she hates being told what to do.

Tomorrow we have a meeting with DM's care team. My hopes for this is that we get an honest assessment of what we can expect. What I will also be asking for is a proper assessment of DM's capacity to make decisions. IMO DM is no longer able to make decisions for herself but I would like to get this formalised.

DB and I are DM's attorneys. However up until now we have been kicking the financial can down the road. DB has been doing DM's financial work for a few years. DB likes being able to control DM's money and I think doesn't want me to be involved. He does see himself as Head of The Family (yes, with capital letters) and I am little sister (I'm an accountant in my 50s).

Don't worry, this isn't an abuse or fraud situation. Families are complicated. DB is very caring of DM but he is quite (very) bossy!

Morning @GnomeDePlume Family dynamics really show up in these circumstances don't they?
My mother still tells me how marvellous my brothers are when they do the smallest thing, yet as the daughter there is a lot of being taken for granted. I am handling it by issuing the men with jobs to do and making them feel important 🙄 It's important to me to know she's being taken care of, but I've become clear within myself about what responsibilities I'm willing to carry, and what I'm not.
I know exactly what you mean with the use of the capitals! Solidarity, fellow little sister 💐
So sorry things are not improving for your mum, and very much hoping the meeting tomorrow is useful!

@WinterFrog @GnomeDePlume nodding along with your posts re family dynamics. I am really struggling ATM and suspect our brother may have referred to my sis and I as ‘middle class women of a certain age’ in the past day or so🤣🙄….no he isn’t called Greg. And yes I know that I missed the all important final g off. Solidarity to all.

💐 @BlueLegume

@GnomeDePlume hope the meeting goes well tomorrow.

I'm fortunate in that my brother is equally involved in everything with my parents. He lives closer to them (but still an hour away) and is single so is more able to move at speed when needed than I am.

Spoke to my folks last night, dad is complaining that the carers are "untrained" and "don't know what they are doing". Mum told me that there was an incident last week where one of the carers didn't open the valve on his catheter correctly so his bladder wasn't emptying for about 6 hours before they noticed that the bag was empty. I've told dad that he/mum needs to say something but I think it fell on deaf (literally!) ears. We'll have to see.

Today's job is to phone the urology department as they've sent through two different appointments for dad a week apart without explaining what they are for...

🌻🌻@WinterFrog and @BlueLegume

Without a doubt family dynamics dating back to childhood are coming through. DB1 is 'in charge'. DB2 feels left out. I do my own thing. Been like this since school days!

DB1 is doing the most visiting to be fair. He does interact with staff more than I do because he visits during the day (my visits are evenings and weekends). Not sure how much notice they really take of his helpful suggestions. I suspect a lot of nodding and smiling gets done.

For the meeting I suspect we will be told that DM has plateaued or is even on a downward slope. Then the question will be 'where next'.

This will be hard for DB1. He feels that the NHS should be doing more, spending more time with DM, jollying her along. Except they haven't the time or resources and DM is obstinate and hates being told what to do.

@CaveMum I do wonder if some people (particularly the older generation) feel very uncomfortable challenging HCPs. Though it doesn't stop them complaining to all and sundry afterwards!

I hope you are able to get something useful out of the urology call.

It is interesting to read of how it is caring for a family member when there are siblings. I find at times I'm crying out for a sibling or other family member as I find it so overwhelming just being me, but then I think it may not make anything easier.

Hugs to all going through this with their relatives, and good luck with your meeting @GnomeDePlume

Mums ward opened to visitors again yesterday after 8 days of being closed due to a norovirus outbreak, so it was good to get in and see her again. She’s struggling though, she can’t do anything for herself, and the nursing staff don’t have capacity to help. They’ve put her back on a soft food diet as she couldn’t manage to cut up a lasagne to eat it - she has full left side paralysis, there’s no issue with her chewing and swallowing 🤦‍♀️

@Randommother it is difficult isn't it.🌻

It does seem that food isn't seen as important in health care until it becomes a malnutrition issue.

It is a big but hidden problem for long stay patients IMO. It is especially overlooked in mixed wards where some patients are stuck for a while but others come and go.

I did notice in many of DM's various wards that food would be doled out then untouched plates gathered up without any comment. Fortunately the unit she is in now do take note of everything.

@PotterHead1985 I think ploughing this furrow alone as you are doing must be very hard. So hats off to you.💐 DB and I don't always agree but we are still pulling together.

Siblings just create more work. They don't help.

Ironically mine only exists as my parents didn't want me to be dealing with their care needs alone (nice assumption there already!) so they decided to have a second baby, despite barely being able to cope with one. Sibling has been a pain all my life, I see him less than once a year and he avoids doing anything to assist but gets away with it because he's male.

Case conference today. DM attended which I wasn't expecting but actually made sense. She was on pretty good form all things considered.

Without saying 'we want her gone' the hospital were saying they want DM gone. She will have a couple more weeks to try and get some physio going but by then we need to have made other arrangements.

DM needs overnight care at the moment and that is likely to continue unless something spectacular happens.

So, care home hunting we shall go. Thankfully DM is self funding so we do at least have the illusion of choice. We did get advised of the things we should be asking about which was useful.

DD has agreed to come with me to look at some of the likely candidates. DB will be no good at this, he will pick holes and want things which aren't available.

DB is being a bit difficult. He still doesn't get that he can't control everything. He would prefer DM to stay in hospital and is sulking a bit because that isn't possible.

@GnomeDePlume How are you feeling about the meeting? Have they said a care home with medical care is needed. We never got to the stage of looking for a care home so I have no advice. But I wish you all the best in your search and I hope you find somewhere that your DM is happy with ( or as happy as she can be). Best wishes.

Good luck finding the right care home @GnomeDePlume! I had a great visit with mum today, they’ve put her back on normal food so she ate well, and said it was the best day she’s had since she’s been in hospital! I’m not sure what’s next for her, she’s not having any physio / rehab at the moment due to her medical issues, but it’s over a month since her stroke and the longer it’s left, the harder it will be for her to regain any function on her left side…

@Anjo2011 having seen DM this morning I am actually feeling happier. I normally see DM in the evenings by which point she is tired and I do suspect there is a sundowning effect going on.

We were given best and worst case scenarios by the hospital. Best is that she will improve to be able to live with some assistance. Worst is that DM won't improve which will mean that she needs 24/7 care. IMO improvement will be limited.

DM seemed reconciled to the idea of going to a care home temporarily. We shall see if she can improve.

Only fly in the ointment now is DB. He wants the home to be convenient for him to get to by bus (he doesn't drive). This limits the options. He is still under the illusion that he can control the process.

@Randommother it is so difficult seeing how quickly condition is lost isn't it. I can see why physio/rehab is delayed but at the same time as each day goes by you do wonder what can be recovered.

@GnomeDePlume I am usually able to visit my mother during the day, and there is a noticeable difference in her, compared to the evening.
Is your mum having all care in bed or are they hoisting her out? Mine was hoisted in a sling to sit in a chair for a while, after three weeks or so. In rehab unit they used a sara-stedy to get her up, to the bathroom etc. She worked on a few steps using a zimmer frame to, during physio sessions. They have a sara-stedy at the home as well now, and can only use the zimmer under very close supervision.
She's awaiting a visit from the community physiotherapy team but no sign of anyone yet.
Best of luck finding a nice place for her. We also had to find a place accessible by public transport for one of my brothers, but within the town it wasn't too difficult.

Ps you might want to reassure your brother that a good nursing home ( with on-site nurses) can be a great deal better than hospital. My mother has a very detailed care plan which we have reviewed, and they seem to be sticking to. It does seem to be well staffed. That's worth checking!