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 , the same happened to Dm. She had three different sized catheters one after the other. Even the largest couldn’t drain enough urine and that’s where the problems became worse and the infection started and caused kidney problems. We were not told this until a week before she passed away. Ask the hospital how much of a problem it’s causing for your Dm.

@CaveMum its just a constant onslaught isn’t it.

Continuing solidarity for all on this thread 💐 My mum also went through nine wards @GnomeDePlume We're just sorting out a nursing home for her and it turns out that even when self funding this is easier said than done! Or possibly it's because she's self funding as we're not getting much in the way of guidance. But she does at least have choices. I've now got hold of a summary of her medical records and can see how complex her needs are. Thankfully she is currently eating reasonably well and is coping without the catheter.

It's all a big learning curve, for sure. Siblings can be both a help and a hindrance I'm finding.

Huge sympathy for your situation. My MIL 90 had a fall about a month ago and it sounded dire. DH works in a hospital and has all sorts of depressing stats about the length of hospital stay vs likelihood of recovery. Amazingly she was ok other than bruising and was discharged home. There followed a few weeks of her being babysat by her children (really difficult as all work full time and she’s about 2 hours from all). She has just gone into a care home - not v happy about it, but there really aren’t any alternatives. She’s very frail but still eating.

sending ((())) to all those with elderly parents.

That's interesting about the food and the delirium. Mam had a bad bout of delirium her first week in, but she was also not eating much of the food because it was horrendous. She is thankfully eating at home (hopefully it continues). She does say however she has no memory of the entire first week in hospital.

@Anjo2011 this is my worry for my DM. She has had her bladder flushed a couple of times apparently.

Of course communication from the hospital is nonexistent. I have emailed PALS, they have replied to say they have emailed the ward manager and discharge coordinator. All a bit too little, too late.

Unfortunately this is a 'requires improvement' hospital.

DM is now moved. The rehab unit is in a different town so this requires a move by ambulance. DM upset by the move and wanted to go and stay with her mum (long, long gone now).

@GnomeDePlume ours is a teaching hospital also in special measures. I hope rehab provides the stability your DM needs and that she improves away from the hospital environment.

@WinterFrog useful to know about the lack of support. At least I now don't expect any!

DM will be self funding also (assuming she is actually going to get out of hospital)

Hope your mum settles ok @GnomeDePlume

Dad’s hospital appointment this afternoon was a waste of time. As he’d had a catheter fitted by the District Nurse last night they decided they didn’t need to see him after all, but of course they waited till he was at the hospital to say that.

Mum said he is struggling with his mobility again - needed a wheelchair to get back to the car at the hospital - but hopefully this is just to him being tired after a long day yesterday and a disrupted night’s sleep. My brother saw him last weekend and said he was doing much better with his mobility so fingers crossed this is a short relapse.

My fingers are crossed for you (and your DF) @CaveMum

As the saying goes, if it's not one thing it's your mother. DM was delivered to rehab unit with a raging UTI. Severe enough to mean they considered sending DM straight back to hospital. Only decided against it because it is Friday and if the hospital is bad during the week, it is worse at weekends.

The UTI was evident in the blood tests done by the hospital. But they were so keen to get DM out of the door these were ignored. GP at the rehab unit picked them up on booking in.

@GnomeDePlume that is shocking, the UTI is probably what is causing all of the problems. I just don’t get the need to discharge a patient when they clearly are not medically fit. It’s stress upon stress for you and your family and of course your DM. I hope she’s ok over the weekend. For you the anguish continues and I understand how tiring that is.

The nursing home liason people are helpful, but but they obviously want the custom, assuming they have vacancies. Self funders amd their families can't rely on social services to help navigate the system. The rehab unit have been much more helpful than the hospital but even so, it's been a case of assessing her home to see what could be improved to make it safe, and we were left to decide whether to bring in live in carers, live in ourselves but get carers to assist with personal care ( too much for one person) or find a nursing home.
It might be worth you casting around so you have an idea of what's out there. Assuming your mum's ailments don't get the better of her, they will want you to find her somewhere to live once they feel they can do no more for her. I wish you all the best in navigating this!
Care is eye wateringly expensive but there is quite a variation.

@WinterFrog thank you. I have started looking.

There are a few decent looking places nearby. I started putting enquiries out a few weeks ago.

Discussed with DB, we will aim to frame this to DM as a temporary convalescent move.

I can't see anyway that DM could go home. As has been repeatedly demonstrated, any sort of minor infection and DM's already unreliable memory can kaleidoscope. She would need 24/7 care and there just isn't the room.

We framed it to our mum as a convalescent move too @GnomeDePlume It did seem to help!

Sorry to hear about everything your poor mum is going through. I’m in a similar situation with mine. She had a fall 3 weeks ago, where she hit her head and fractured her wrist and pelvis, which lead to an internal abdominal bleed and a significant brain bleed, which currently is causing full left-side paralysis. She’s badly deteriorated in hospital with a pneumonia first, then a UTI which has lead to a stage 3 kidney injury and sepsis - all of that’s been treated with antibiotics which she is responding to, although we don’t know what the long-term damage will be.

However, she’s completely lost the will to live. She’s been through so much in the past 3 weeks, she just wants it to be over now. The food is crap, tasteless mush that she has no interest in eating, she hates using the bed pan as it’s so uncomfortable to get her on it with her fractured pelvis, and there’s no privacy in the ward, other than the blue curtain, so she’s constipated despite the daily dose of laxatives. She’s telling anyone who’ll listen that she wants it to be over, and I don’t blame her - she in constant pain and can’t even adjust her position to make herself more comfortable.

No advice I’m afraid, just a hand hold and some solidarity from someone going through similar xx

@Randommother sorry to read about your DM, so many complications to deal with. My DM had a very similar story , they even considered dialysis for the kidney injury but there were so many other complications that it wasn’t to be. Sending good wishes to you, it is the most difficult time.

Sorry @Randommother, my mum also fractured her pelvis but had none of the other horrendous complications you mention. Do they think the paralysis will be permanent? The thought of living with the inevitable impact on mobility with a pelvic fracture - my dm went from full mobility to needing a walking frame at all times and it has also caused incontinence - is bad enough, but what you describe is so much worse. A life lying on a bed in a nursing home is no life and I'm not surprised she's had enough.
PS if she is on codeine for the pain, it will likely be making the constipation worse.

@Randommother I'm so sorry, that is beyond awful.

Thanks everyone, actually had quite a good visit with her today, she seemed a bit more comfortable than she has been. We don’t know if the paralysis is permanent, but they can’t do any rehab while she’s so ill, so it’s just a waiting game at the moment.

@Randommother that sounds positive. The waiting is so frustrating. Which is kind of where I came in - where do we go from here?

DM has taken a turn for the worse this evening. Got very confused and distressed and got out of bed - disastrous as she is on IV ABs and a catheter.

Rehab unit want to send DM back to the hospital but DB asked that she stay in rehab unit for as long as possible unless the move back becomes medically necessary. Back to hospital would mean A&E which will be noisy and chaotic.

Her potassium levels are high plus this infection. IME the delirious behaviour is infection related which makes me worry that the ABs arent working quickly.

I will be sleeping with my phone next to my head.

@GnomeDePlume theres just no end is there, I feel for all of you. It seems she should never have been discharged from hospital, she has too many medical needs. Waiting for the phone to ring is just awful, I felt the same for the last week of my DMs life. Her Dr said you know when I call it’s not good. Again so many similarities, IV AB’s, catheter and never ending confusion. Thinking of you.

@GnomeDePlume that doesn’t sound good, and I agree it sounds like with her medical needs she shouldn’t have been discharged from hospital. Have they mentioned anything about kidney function at all, Mums AKI developed from a UTI and was picked up on a blood test, it was similar with high potassium levels and confusion/ delirium. I hope the antibiotics start working for her, it’s so hard to watch someone you love so ill xx

Nothing is so far mentioned about kidney damage.

As I understand it, elevated potassium levels can be caused by kidney damage and then lead to heart problems.

DM shouldn't have been discharged to the rehab unit. The problem is that now a return to the hospital will mean the busy and chaotic A&E which is a horrible atmosphere for someone with delirium.

It did feel like once the decision to discharge DM from hospital was made, they weren't going to back down. The blood tests showing very elevated infection and potassium levels were ones taken by the hospital.

The GP doing check in at the rehab unit ordered the IV ABs.

@GnomeDePlume, that’s shocking treatment from the hospital, they should never have discharged her knowing she wasn’t medically fit!

I had a call from mums hospital this morning, they’ve locked down her ward due to a norovirus outbreak, so I can’t visit until Tuesday at the earliest. I’m just hoping she doesn’t get it, it’s the last thing she needs on top of everything else she has going on!

@Randommother my fingers are crossed for your DM and you. Norovirus is horrible.

Hugs to all.

Mam has had 2 mild versions of her 'funny turns' the last two days which isn't great. She hadn't had one in a couple months. The thing is they have no idea what they are, what causes them, how to treat them etc, which makes life so much harder. And makes me terrified to not be here as if I wasn't and she had one when upright shed collapse.