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.

Just adding an edit as I didn't realise this thread was so long so what I originally said below isn't really relative now!

Presume you weren't the close relative visiting her everyday so it could be she was struggling a bit before but you were more of a 'fair weather' relative who didn't see the decline?

Just saying this as we had relatives like this with MIL that had no idea how much she was declining as they only seen her every few months and had no idea she was setting the cooker on fire, not having showers, not doing laundry or cleaning and generally starting to fall apart. It was us as the daily visit family that kept on top of those things for her.

@GnomeDePlume has acknowledged that her brother visited more often @WellsAndThistles but even so, your post does sound a little bit barbed. OP works full lime and has a family; her brother is retired. Brothers are well able to pass on info though if there are concerns.
I was/am still in the position sometimes of shouting into the void about mother's confusion, suspect decision-making and general frailty, but this is easing as her regular carers get to know her and she's allowing her mask to slip a bit.
Just visited mine today and she informed me she's going home next week because she doesn't like the food. It's heartbreaking that she really pictures herself being back as she was before, if only she was at home.
It's tough, and it's rubbish being old, and so I, like @CaveMum wish us all best wishes, hugs and patience in the coming days.

@WellsAndThistles no, I wasn't the daily visitor but equally I wasn't a fairweather visitor. As @WinterFrog kindly pointed out, I work full-time. DB is retired and lives a 5 minute walk from DM.

Before she had her fall DM was living independently. Shopping, cooking, gardening, clubs. Getting a little repetitive as I guess we all do but generally fine.

Any road up, DM has had a fall in the care home. No injuries or pain. Unfortunately DB is getting himself worked up about it. He is being very negative about the home without doing anything.

Unfortunately DM is old, frail and has no memory about this. Falls go with the territory.

Short of (a) having someone inches from the old person 24/7 like a presidential bodyguard or (b) swaddling them in bubblewrap, there is nothing care homes can do to ensure no falls or trip injuries whatsoever. It would only be negligent if her care plan stated that she needed, say, two people to help her up out of bed, and only one person was available. Your brother sounds like a bit of a pain moaning about it. Glad your mother is okay because you really don't need A&E right now.

I think the main reason many try and get by without residential care when in all honesty it would be the best solution is a built in fear of leaving your family with no inheritance if self funding and those that can't be self funding need to have considerable needs to get care funded- and of course there are also the odd very greedy folks out there who would try and keep parents out of much needed residential care if it's going to seriously deplete their inheritance

This. And often falls happen because the person is doing something risky eg walking to the toilet without their stick or frame - my dad did this all the time, even though it slowed him down and made him less steady, because he wanted to show he could do without them. That's more likely at least to be noticed in a care home and someone will say 'Hey, Joe, where's your frame?' and or get it and or help him along. But as @AInightingale says you can't guarantee that unless someone watches them 24/7.

It's also more likely that someone in a care home will recover better from a fall, because they'll be noticed sooner instead of spending hours lying on the floor, they'll be checked over and a doctor called if needed, and so on. Glad your mum seems ok @GnomeDePlume .

This is the reason MIL is resisting it. We've tried to talk to her about it but she won't listen.

So sorry to hear about the fall @GnomeDePlume I'm glad she is unhurt.
My mother is worried about falling out of bed. Elf and safely apparently now decree that beds shouldn't have the sides up like they do in hospital. The argument is that there's a risk of bone breaks should the person inadvertently slide an arm or leg between the bars, or attempt to climb over them. We were told this by the rehab OT and by the person who did mum's assessment. It boggles my mind as I worked doing care in the community and we would always put the sides up ( trained to do so) We did lower the beds close to the floor overnight though. Mum's not considered a risk but if she were, they'd provide a kind of crash mat apparently.

Poor mum is really quite anxious after being in a double bed for 60+ years. The single profile bed must feel very narrow 😔 They used the sides in hospital as there was more observation (allegedly!)
Mum's most recent falls at home were sliding off her chair. Looked like that might happen in the hospital a couple of times so they had her in a deeper wheelchair kind of thing. We brought her a riser recliner for the home and she seems safer in that, though she runs the risk of playing with the controls and tipping herself out.

Solidary, once again, to all in this stage of our own lives 🌻

@AInightingale &@Holesintheground you are both absolutely right. DB's concern is that DM slipped out of her chair in her room while trying to get put herself to bed.

To DB this means the chair is at fault. Unfortunately, short of making DM sit on the floor, DM is going to do this again at some point.

He is suggesting that staff are brusque and bullying with DM. I have seen no evidence of this. The staff are brisk and cheerful. DB feels they should spend more time gently pleading with DM to do whatever is necessary as that is his approach.

He can't see that the staff spend their days moving, helping and caring for contrary elderly people. They know what approach works best.

The overarching issue for DB is that he doesn't like being challenged by anyone he considers his social and academic inferior. Especially if they are female.

@GnomeDePlume 🌻 🍷
What else to say about your brother really. I know a few men like that. My brothers have their faults but those specific traits are not among them. Hugs to you as you navigate this

@WinterFrog I can see the logic with not putting the bed rails up. Having seen how determined my DM can be about getting out of bed especially when in the throes of a UTI delirium then the bed rails add to rather than mitigate risk.

But it must be hard for your DM. So much change in such a short time.

We have decided against getting a recliner for DM. She no longer has a lot of hand eye coordination. She would all too easily get herself stuck.

I have started the ball rolling on getting DM's capacity assessed. Her big problem is her memory as she forgets that she can't walk. Without a formal diagnosis of dementia and an assessment of lack of capacity we can't put in place some of the measures to protect DM. These include pressure sensors for bed and chair.

This stage isn't easy is it.

@DaisyStarburst this is only opinion why it's vital we bring in the kind of thing the Tory's were proposing but never pushed through ( as they knew full well couldn't afford to fund it ) that only £80k self funded max can be used - I would much rather we all paid into a ring fenced indemnity/insurance policy for this very purpose as an add on to NIC that covered off the £80k - does your MIL need residential care @DaisyStarburst or would she be ok with rented 'extra care' sheltered and a good 4 times a day care package etc .? My friend deals with CHC packages for very unwell people and says many would be better in extra care sheltered and don't always need nursing/ residential - it's that some families haven't checked out the extra care sheltered options .

She has 4 times a day carer package now and isn't really coping, has has some falls and is quite fragile but is very with it mentally so has full capacity. Lives alone in her bungalow, so all on one level. Every time we mention care homes she seems as though she's thinking about it but then says she wants to leave money that's in the house for her children not use it to pay for a care home. We've been there when carers have come round and they seem kind and caring and spend the time she needs, not rushing her. Just not sure how long this can go on for as she gets older and more frail. It's hard isn't it.

@DaisyStarburst yep very hard- wonder if she might benefit from the scheme where you give free board and lodging to a younger person who can run little errands, do a bit of meal making and will then be there at night , combined with care package?

I think that's a good idea. She is a difficult person though, always has been, when she first started struggling with housework etc she went through quite a few cleaners, every time saying she'd sacked them for very minor things. I suppose it's a way of keeping control.

@DaisyStarburst I know what you mean- my FIL is a very ok bloke at 85 in most ways but even he has told gardeners he no longer needed their services because they didn't trim his lawn round the edges within an inch of its life and a spirit level

🌻🌻Happy New Year. All best wishes to you and yours.🌻🌻

With the Christmas holidays out of the way I am going to start regularising things to do with DM.

Her clothes keep being stuffed into drawers any old how and a couple of times I have seen mum wearing pyjama tops as daywear. DB isn't bothered but I think it is important that DM looks like she gives a shit or someone gives a shit about her. It does affect how people react to her.

I need to start the attendance allowance application. It's a drop in the ocean of cost but does mean that every 14 weeks DM will get a free week.

Sadly people have died because of bed rails being used inappropriately so yes they can only be used now if a risk assessment shows it to be safe. That's not hyperbole. It's a huge issue. I'm a community OT and this is one of the trickiest things I deal with. Families find it really hard to accept that rails aren't the answer and I completely understand why. A low bed and a crash mat and / or alarms are the safest way to manage this.

Just to support this. It varies from person to person what is the least risky and this should then be in the care plan.

My experience of DM's care home is that they seem to be much more Health & Safety focused than the hospital was.

An example of this is using the MoLift (sack barrow) to move DM about. The hospital approach was simply for the patient to be hauled to a standing position (including using clothes to pull on). The patient would then have to hold tight while being manoevred.

In the care home the patient has a chest strap which includes handles which can be used by the carers. These are then clipped to the MoLift while the patient is moved.

I may be wrong but the care home approach seems safer.

That's great to hear @GnomeDePlume. My experience in care homes many years ago was the opposite, sadly.
In hospital I'd guess that the staff were encouraging your DM to maintain what ability she had to participate in her transfer. They most likely have more specific skills and experience of supporting someone in that way. It should really only be physios and OTs who do anything that looks like "lifting" (they won't actually be lifting though, which is not safe for patients or staff)
Now she's in the home they know that she's not going to improve so the mollift is the safest long term option.

Really interesting to hear the OT take on bed rails - thanks. Mum's ot did explain clearly and I do understand, I just feel sad for her that she feels so vulnerable in her little single bed. Interesting about the hoist use too.

@GnomeDePlume happy new year to you too 🥂 I do agree that people need to look as if someone gives a shit. Over the weeks we've got to know mum's most regular carers and have developed a good relationship with them. It helps I think. They are really decent people, but some are less experienced than others, and sometimes they just don't think, re clothes. Mostly they are absolutely great with her, and I hope that because they know that we visit frequently, they won't put her in mismatched clothes or whatever. Dignity is so important and they do seem to uphold that as best they can.

We are now having our first crisis in the care home.

DM was a bit 'off' yesterday when I visited, tired and needing her bed straight after tea.

Today she was very sleepy and slept for the whole afternoon in the lounge then refused tea having already eaten almost nothing for lunch.

It was suggested that DM went to bed. At this point things went bad. DM refusing to leave the chair in the lounge, absolutely furious to the point where she hit one of the care team.

It looks like this could be another UTI.

DB is now in a panic that the care home may want DM to leave so has been sending me angry, doom laden texts. I understand that he doesn't have anyone to talk to at home but I do wish he would read what he has written before pressing send as he can be quite unpleasant.

oh heck. The care staff will be used to dealing with this and I think you're right, than an infection is at play here. Hope you can sort antibiotics quickly.

And you can't be a whipping post for your DB all the time OP. He needs to know that you are finding everything as equally as stressful as he is. Perhaps a short text back to him saying exactly what you said in your update will pull him up, if only for a short while.

I found this bit hard where you need to let them do their job without getting too involved. They are the professionals and the ones around your mum 24/7. If she has a UTI they will deal with it. They will have strategies for dealing with distressed and challenging behaviour. Absolutely make sure you see her care plan and keep up to date but day to day management of any issues is their role.