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 we are on the middle. If it is us hospital transport has gone wrong!

DB visiting DM now. Hopefully all settled after being busted out of the holding pen ward.

What a difference a day makes!

Visited DM in her new unit last night. She was in good spirits, lucid, had eaten.

Physio starts today.

What great news!

That is fab news.

Next it would be good to talk to the occupational therapists about your worries re going home - it's never too early. It sounds like a ring doorbell that you or your DB could monitor would be good, plus scam protections on phones etc. A falls review at home plus equipment and a pendant alarm might all help.

My DM thrived in rehab place. After 14 hospital stay with pneumonia I wondered long term result but she’s now back as she was before it happened, like it never happened

@GnomeDePlume I have found the rehab staff much more involved with the rest of us as a family. They are extremely busy but it's usually possible to speak to the nurse in charge of her bay, who has sat down with me a couple of times to run through her notes, including her physio notes.
Hospital was more to get her medically discharged, and the unit she's now in are focused on getting her to whatever mobility levels she's able to reach, and then help with decisions regarding where she'll go next (home or residential care - it's too early so say yet)
One occupational therapist seems to to have been assigned to mum which is brilliant as she's getting to know her, and she's phoned me twice to get info, give updates and generally answer my anxious questions. She explained how her role differs from doctors/nurses/ physios. She's had mum out in the garden in a wheelchair as mum was a keen gardener, and they have worked on fine motor skills with puzzles and hand exercises, and started her on some simple word searches.
I was like you, fretting about how muddled she appeared and wondering if there was any hope for a good quality of life, but I'm blown away by what they've achieved in three weeks.
There's a physio gym there, and a room right in the middle for group activities where the patients sit with support workers and do various therapies and social activities. I walked in on a music concert the other day.
This is in a local hospital rehab unit btw, all on the NHS. I really hope your mum's is as good. I'm finally beginning to exhale after feeling on standby for weeks, as it's clear they see the patients there as whole humans rather than medical conditions.
Wishing your family all the best 💐

Thank you all for the excellent advice re engaging with OT.

I have passed this on to DB. He is currently of the view that we should be thinking of residential care. But I'm not sure.

If DM needs help with (and remembering to) get up, washed, dressed, toileted, fed etc then residential care will be the way forward.

If DM needs adjustments to make her home safe (major de-clutter, grab handles, ring door bell, fall pendant or bracelet) then we do those things.

At the moment we don't know where DM will be at in a few weeks.

Finances will be a determinant. At the moment DM has a modest pension, savings and a home which she owns. I presume DM will need to be self funding for any care she needs whether it is residential or carers coming in. If she stays in her own home then this will burn through her savings which are needed to provide some of her income.

@GnomeDePlume your DM may be entitled to Assistance Allowance, which is not means tested, to help with the cost of carers even if she self-funds some assistance. There are two levels depending on whether she needs overnight care, the forms are lengthy but straightforward

@Defiantlynot41 Thank you!

It’s Attendance Allowance not Assistance Allowance (in case you’re googling)

Unfortunately DM's lack of interest in food has returned. She is pushing food round her plate to make it look like she has eaten but no real nourishment being taken. She is also unaware of how frail she has become - attempted to get out of bed without assistance and had to be settled down again by staff.

This is all very distressing for DB as he is a total conformist and gets bothered if he sees DM attempting to break ranks!

So we are no further forward. On the positive side the new unit has free parking and is much easier to negotiate than our sprawling general hospital which is far too easy to get lost/trapped in.

DM now back at the general hospital as her lack of eating has led to a dangerous imbalance in electrolytes.

Once these are back in balance then hopefully she will be back to the rehab unit (before she loses her bed there).

Still not sure what happens next. DM is still bedbound. DB is getting to grips with the reality of care options. The rehab unit stay is normally up to about six weeks. If DM still needs nursing care after this then we need to look at nursing homes.

I am resisting telling him (true blue Tory) that this is what he voted for!

I'm so sorry that this is so fraught for you @GnomeDePlume It all sounds very difficult 💐 Mum's rehab unit says four to six weeks on average, but they'll extend it if the patient is showing progress and would benefit from more therapy. It's very distressing seeing our loved ones so frail, isn't it, especially when it seems to have come on so suddenly. I fear our our mother's time in the unit is the calm before the storm, as whether she returns home or to a nursing home, there is going to be so much to sort out. But I'm finding not knowing what the future holds quite difficult too.
I wish you all the best!

@WinterFrog yes, it is the uncertainty. Much sympathy to you.

An additional factor we have found frustrating is the lack of communication. Not simply from hospital to patient/us but also between departments. Nothing is planned then a physio appears or a porter arrives to take the patient off to a scan which has been arranged by a different department.

I suppose this is all part of the siloed way of the hospital. To orthopedics DM is a fractured femur, to the diabetes team DM is a diabetic, to the nursing team DM is a person who won't eat and on...

There seems to be no sense that DM is an 85 year old who was coping just fine with her life with a little gentle support from family and she has now had that life turned upside down.

I do wonder if the eating or lack of it is now the one thing DM is allowed to control so she is exerting that control.

I feel for you, it’s a terrible time. My DM was very similar, after being on three wards and then bed blocking she seemed to give up. She went to the respite unit which was lovely and was disinterested in food and drink, she thought people had been shouting at her in the night, said there’d been a big sing song when there hadn’t etc. I thought she had rapid onset dementia! We persevered with high calorie drinks and went down the Uber smiley, cajoling her to eat and drink route (like a toddler tbh).

She wouldn’t engage with the Physio at all. Eventually she was discharged home with carers 4 x a day. She seemed the same for a few weeks and then fast forward to now. She has become much more with it and lucid again. She has suddenly started eating all her favourite food and will drink beakers of water or cranberry. She is desperate to get moving again and can’t remember not engaging with the Physio. She even insisted on ringing the GP herself the other day. It’s really very odd. So your DM may come back to some extent. It’s possible, especially if she does engage with Physio. Try and keep positive with her. Also, she may not and the realities of being bed bound are very difficult to see and now my DM has ‘realised’ she is embarrassed about it all.

Take care of yourself too, it’s very difficult ❤️

@chosenone thank you for the kind words.

The latest thing is that DM has had a minor stroke. She's now in an assessment ward, not sure where next.

It does feel like we are in uncharted waters. The main impact of the stroke seems to be that DM is seeing things. She is so weak anyway that it is hard to know if there is any other weakness.

DM wants to go home but I can't see how this will be possible any time soon.

What comforting words @chosenone Best wishes for your mother's continuing recovery 💐

@GnomeDePlume my goodness your poor mum's really gone through the wringer! What a rollercoaster for you, too!
What you said about the siloed way of the hospital, and mum not being seen as the 85 year old lady that she was, all rings true to me as well.
I'm feeling so very protective of mine, though she's actually being very well looked after. Just bewildered and vulnerable.

DM is slowly going downhill. The stroke is apparently ongoing. UTIs now seem to be continuous. Yesterday DM had another episode of paranoia, swearing and throwing things, convinced something bad had been done to her.

DB and I are named in her LPA and have told the hospital that we believe that DM doesnt have the capacity to make her health decisions. Copy of LPA added to DM's file.

We have told the consultant currently responsible for DM that her comfort is now paramount. We believe we are now in the end. The consultant briefly suggested DM's situation could be improved to the point of discharge to a care home. He also talked briefly of palliative care.

My parents broke a leg in similar circumstances and i am sorry to say but it was the beginning of the end.The geriatrician explained to us, that frailty is characterised by the inability of the body to readjust when something goes,wrong.she sailed through surgery and the next,t few days, but then just stopped eating and was asleep all the time.

Very similar happened to my DM. Hospital were going to discharge straight to a nursing home but we agreed they would discharge to her own home if we organised 24/7 care to see how it went. To cut a long story short it went amazingly well from the first night home. No one could believe how much she changed for the better once home, completely back to normal and didn't need 24/7 care. Everyone was shocked at the turnaround. As the saying goes there's no place like home. Hopefully it will be a similar outcome for your DM too.

@mm81736 I think that is a good definition of frailty. DM has had many 'shocks to the system' starting with the fracture itself.

Moving from ward to ward has no doubt made sense in terms of hospital admin. DM has been in 6 different wards.

Unfortunately for DM, each move has left her confused and distressed. The hospital is confusing enough to walk round. Being wheeled round on a bed has just disoriented her.

Sorry I should add DM did have carers 4 times per day at home including a lot of support from family. She was very ill when in hospital and family called a few times as she was so poorly. Her spell at home was good for a couple of years before deteriorating and being hospitalised for the final time. DM had cancer and was then diagnosed with vascular dementia, she had a series of mini strokes and Alzheimer's.

DB and I have agreed between us that we are not able to provide DM with 24/7 care.

While DM would want to be home, I'm not sure she would be safe. Her memories of 'home' are quite jumbled and include her childhood home. I could easily see her trying to go 'home' even when she was home. That's a lot of responsibility for one person in to deal with.

I am sort of in the same position as you OP - mother who was then 89 and dealing with dementia had a bad fracture four months ago, was in rehab ward for six weeks then discharged to a care home as a return home was deemed impossible. She had a lot of urine infections which caused weird disorientation, was also badly constipated at a couple of points. She has been sick and struggling with poor appetite for weeks now. Care homes are always full of sickness bugs and they were blaming that, but I can't see how it can be causing her lack of appetite, for weeks on end like this. Sorry to hear your mum has had a stroke too. No advice really, we are in the dark too, just solidarity, it's bloody awful.