Page 9 | Where do we go from here?

GnomeDePlume · 2024-10-16T22:25:09+00:00

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.

Anjo2011 · 05/01/2025 12:55

Oh no @GnomeDePlume I’m sorry to read this update. I hope by now she has been assessed and admitted. Thinking of you.

CaveMum · 05/01/2025 10:50

Sorry to hear about your DM @GnomeDePlume, hope you get some answers soon and that you get home for a rest.

Projectme · 05/01/2025 08:37

Oh no. I hope the hospital stay is short and they have her back on the mend. What a horrible start to the year for you all💐

Original poster

GnomeDePlume · 05/01/2025 08:26

We are still in A&E. DD is coming in to take over from me so that I can go home and sleep for a few hours.

Still no real idea what is wrong.

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Joystir59 · 05/01/2025 07:49

She is 85, falls are devasting for older people and realistically she is unlikely to regain all the ground lost.

WinterFrog · 05/01/2025 07:38

I am so sorry to read this. My thoughts are with you both! Very much hoping she has been given appropriate treatment by now 💐

Weenurse · 05/01/2025 04:58

So sorry she is back in hospital

Original poster

GnomeDePlume · 05/01/2025 00:03

Thank you @WinterFrog .

Unfortunately we (DM and I) are in A&E. DM was found this morning vomiting copiously (apologies for TMI). Care home phoned 111 who sent a GP who immediately called an ambulance.

DM being assessed. We are mostly being left alone in a room with a beeping machine.

It's not really clear if DM has a UTI or a more general infection. Blood tests have been taken but not heard of any results as yet.

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WinterFrog · 04/01/2025 14:43

@GnomeDePlume I love your deadpan delivery of your description of your brother!
All I can say is, yes! I know where you're coming from.
Sorry it's so difficult for you and obviously your poor mum 🌻

My mother has started to show her personality as she's settling in. She was on her best behaviour and now she has relaxed a bit...

The staff handle her brilliantly and it's rather nice being able to leave them to take care of things, most of the time. I do need to arrange hearing and eye tests though as various items got lost in hospital. Dirty clothes have been returned to her wardrobe too, but that could be because she insists that 'my daughter will wash that' as they're all wool things. I don't mind, except nobody tells me anything so I rummage when I'm there.

I hope your mum gets treatment she needs for possible uti. That's a real benefit of the nursing home isn't it? No more hours on the phone trying to book medical care.

🍷 🍫 💐 to all!

Original poster

GnomeDePlume · 03/01/2025 13:16

Thank you

Care home staff finally managed to get DM to bed at midnight. When I phoned at 9am she was still asleep. The care home was waiting for a GP call back so assuming it is a UTI then hopefully ABs will start quickly.

DB is a tricky character. He is very certain that he is 'the person who knows'. Nobody else knows anything. He can be very blamey, a characteristic he shared with DM.

His current obsession is with the chair in DM's room, he is convinced that it is 'dangerous'. First he tried to insist that one of the chairs that DM had taken a shine to was removed from the lounge and put in DM's room. Unsurprisingly the care home said 'no'. So I am now tasked with finding an equivalent chair. He hasnt the time as he is fully occupied with visiting DM 6/7. As I only visit DM 3 times per week and work full time I have plenty of time.

As I know that whatever chair I locate will be 'wrong' in some way I'm not rushing at this task. My personal view is that if the chair in DM's room is not perfectly comfortable then she will be more easily persuaded to spend more time in the lounge where she has far more social interaction.

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helpfulperson · 03/01/2025 09:45

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.

Projectme · 03/01/2025 09:33

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.

Original poster

GnomeDePlume · 02/01/2025 22:00

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.

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WinterFrog · 01/01/2025 16:10

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.

purplelagoon · 01/01/2025 15:30

GnomeDePlume · 01/01/2025 14:29

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.

Original poster

GnomeDePlume · 01/01/2025 14:29

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.

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helpfulperson · 01/01/2025 13:12

purplelagoon · 01/01/2025 13:08

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.

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

purplelagoon · 01/01/2025 13:08

WinterFrog · 28/12/2024 08:12

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 🌻

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.

Original poster

GnomeDePlume · 01/01/2025 11:22

🌻🌻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.

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Crikeyalmighty · 28/12/2024 13:33

@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

DaisyStarburst · 28/12/2024 11:18

Crikeyalmighty · 28/12/2024 11:07

@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.

Crikeyalmighty · 28/12/2024 11:07

@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?

DaisyStarburst · 28/12/2024 10:35

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.

Crikeyalmighty · 28/12/2024 10:21

@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 .

Original poster

GnomeDePlume · 28/12/2024 08:45

@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.

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