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[Misc] Advice on elderly parent / (possible) dementia / hospital discharge type stuff



Bozza

You can change this
Helpful Moderator
Jul 4, 2003
56,535
Back in Sussex
Apologies, this will probably be quite long, but I'm very appreciative for anyone who reads it and is able to offer any advice from their own experience...

Eight weeks ago my mum fell out of bed in the middle of the night and broke her hip quite badly.

Since then she's spent five weeks in Worthing Hospital where she had the operation and subsequent initial recuperation and, since then, three weeks in Crawley Hospital's rehab facility where she still is. I've visited her every day throughout this for long periods.

My mum is 78 and prior to this incident was still pretty independent. She's a hairdresser by trade and still did a small bit of work. She still drove and was capable of going to a big supermarket and doing her shopping etc. Her sister / my aunt, who is a few years younger lives with her which works quite well.

She had started to become short-term forgetful - she might ask me the same question in the space of a few minutes, but was still in pretty decent mental shape.

Since this incident, she is all over the place mentally. I'm aware of post-operative delirium, and that in some people in can take a while to clear and whilst I'm hoping that her mental state is caused by that as well as the whole traumatic episode and hospitals not being great places to be, I also have to accept that this may now be it.

And when I say "this" I mean she thinks people in the hospital are trying to kill her. Every day she has long tearful episodes where she tells me she's going to die and I won't see her again and I try to convince her otherwise. She still doesn't really know she had a fall and a big operation and. sometimes, doesn't even seem to know what a hospital is. She'll speak about people and pets who died 20-30 years ago as still being alive. All of this and lots more besides. She's nothing like the woman she was just eight weeks ago.

The hospital are starting to talk about discharge, with a view to her coming home - something we would all ordinarily want. However I just don't feel she'd be safe. They'll arrange a few bits of equipment, and three to four care visits a day for up to six weeks. However, they advise against bed rails as people can try and climb over them to get out and then fall a greater distance to the floor.

Without something I would very much fear my mum waking in the night needing the loo, forgetting where she was and/or forgetting she needs a frame to move about and would fall again, risking another bad break and we'd be back to square one, if not worse.

The occupational therapist said something along the lines of "she will need 24-hour supervision", which I completely agree with, and as much as my aunt (who lives with her) and me could try, I now think that just isn't practical. Most of the burden would fall on my aunt, who is not a young lady,

We have a meeting with the hospital on Monday and I think my opening question is now going to be "If we can't take her home as we don't believe we can look after her safely, what is going to happen?"

My fear is if we did take mum home, hoping her mental state would improve in familiar surroundings (although she can't currently remember where she lives, what her house looks like nor that my aunt lives with her) and things didn't work out, then it would be difficult and slow to make alternative arrangements.

Has anyone been in a similar position, and can share their experience at all?
 






Cheshire Cat

The most curious thing..
Have you been in touch with social services, and has your mother had a dementia test as this doesn't sound good. Do you or someone else have a power of attorney over her affairs as without one you may have problems.

My wife has severe early onset dementia. In January I cracked, called social services to say I couldn't manage any longer, and she was placed in a nursing home for her own safety under an emergency deprivation of liberty order. She has been there ever since and is very unlikely to come home as she will never recover and is getting worse.

It costs a fortune as she is self financed but was the only practicable solution.
 


Seagull58

In the Algarve
Jan 31, 2012
8,096
Vilamoura, Portugal
My stepmother was very elderly and living on her own when her dementia became noticeable. She had two very helpful neighbours who kept eyes on her and we rapidly organised home care, firstly 3 visits per day and then graduating to several months of 24 hour home care. After that, we moved her into a care home All of this had to be done privately because she wasn't destitute and, therefore, deemed to be able to pay for her care.
If your aunt is able to cover the daytime, maybe a night-time carer could be organised? Would a motion/proximity sensor and alarm be feasible also?
Edit: as mentioned above, orrange enduring power of attorney for health and for finances ASAP, if not in place.
Further edit: we found with my stepmother that a glass or two of water would improve her cognitive function within a few minutes. Keep her well-hydrated and don't believe her when she says she has eaten or had a drink. She will not know whether she has or not.
 
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chip

Well-known member
Jul 7, 2003
1,082
Glorious Goodwood


Bozza

You can change this
Helpful Moderator
Jul 4, 2003
56,535
Back in Sussex
I can’t offer any advice but knowing amongst many things the emotional strain of looking after and supporting my 91 yo mum after she broke her thigh bone my thoughts are with you my friend
Thanks.

It's been a very tough and long eight weeks. My sister lives in Northampton, works and has a family to look after etc, so it's largely been on me, day in and day out. It's incredibly draining.
 


southstandandy

WEST STAND ANDY
Jul 9, 2003
5,956
If you can afford it, you could have a private carer come in a couple of times a day (I do for my dad) to assist with basic tasks, maybe dressing, getting ready for bed, dinner? We use Alina in Worthing/Lancing area who have been really good just supporting my dad.

Yes, it can add up a bit, but if there is a little money there it might be worth considering for that continuity and a familiar face coming in to check on things regularly. Hope you get things sorted.
 




Bozza

You can change this
Helpful Moderator
Jul 4, 2003
56,535
Back in Sussex
Have you been in touch with social services, and has your mother had a dementia test as this doesn't sound good. Do you or someone else have a power of attorney over her affairs as without one you may have problems.

My wife has severe early onset dementia. In January I cracked, called social services to say I couldn't manage any longer, and she was placed in a nursing home for her own safety under an emergency deprivation of liberty order. She has been there ever since and is very unlikely to come home as she will never recover and is getting worse.

It costs a fortune as she is self financed but was the only practicable solution.
No contact yet, as there didn't feel any need really - we've been hoping my mum would come out of the other side, mentally. In both hospitals a lot has been made of post-op delirium and the impact of such a large traumatic event. She's also had at least one infection, which can really mess with the mind.

No POA - again, there'd never felt the need to do it because. prior to this incident, she was mentally quite sound. Hindsight is a wonderful thing etc.
 


Chicken Run

Member Since Jul 2003
NSC Patron
Jul 17, 2003
19,390
Valley of Hangleton
Thanks.

It's been a very tough and long eight weeks. My sister lives in Northampton, works and has a family to look after etc, so it's largely been on me, day in and day out. It's incredibly draining.
I have a similar situation except my brother lives as close as me but apparently because i’m a cabbie i have all the time in the world to cover all hospital appointments, shopping (she obviously refuses anything to do with a delivery) and all the admin etc etc,
 


Tom Hark Preston Park

Will Post For Cash
Jul 6, 2003
71,878
Apologies, this will probably be quite long, but I'm very appreciative for anyone who reads it and is able to offer any advice from their own experience...

Eight weeks ago my mum fell out of bed in the middle of the night and broke her hip quite badly.

Since then she's spent five weeks in Worthing Hospital where she had the operation and subsequent initial recuperation and, since then, three weeks in Crawley Hospital's rehab facility where she still is. I've visited her every day throughout this for long periods.

My mum is 78 and prior to this incident was still pretty independent. She's a hairdresser by trade and still did a small bit of work. She still drove and was capable of going to a big supermarket and doing her shopping etc. Her sister / my aunt, who is a few years younger lives with her which works quite well.

She had started to become short-term forgetful - she might ask me the same question in the space of a few minutes, but was still in pretty decent mental shape.

Since this incident, she is all over the place mentally. I'm aware of post-operative delirium, and that in some people in can take a while to clear and whilst I'm hoping that her mental state is caused by that as well as the whole traumatic episode and hospitals not being great places to be, I also have to accept that this may now be it.

And when I say "this" I mean she thinks people in the hospital are trying to kill her. Every day she has long tearful episodes where she tells me she's going to die and I won't see her again and I try to convince her otherwise. She still doesn't really know she had a fall and a big operation and. sometimes, doesn't even seem to know what a hospital is. She'll speak about people and pets who died 20-30 years ago as still being alive. All of this and lots more besides. She's nothing like the woman she was just eight weeks ago.

The hospital are starting to talk about discharge, with a view to her coming home - something we would all ordinarily want. However I just don't feel she'd be safe. They'll arrange a few bits of equipment, and three to four care visits a day for up to six weeks. However, they advise against bed rails as people can try and climb over them to get out and then fall a greater distance to the floor.

Without something I would very much fear my mum waking in the night needing the loo, forgetting where she was and/or forgetting she needs a frame to move about and would fall again, risking another bad break and we'd be back to square one, if not worse.

The occupational therapist said something along the lines of "she will need 24-hour supervision", which I completely agree with, and as much as my aunt (who lives with her) and me could try, I now think that just isn't practical. Most of the burden would fall on my aunt, who is not a young lady,

We have a meeting with the hospital on Monday and I think my opening question is now going to be "If we can't take her home as we don't believe we can look after her safely, what is going to happen?"

My fear is if we did take mum home, hoping her mental state would improve in familiar surroundings (although she can't currently remember where she lives, what her house looks like nor that my aunt lives with her) and things didn't work out, then it would be difficult and slow to make alternative arrangements.

Has anyone been in a similar position, and can share their experience at all?
I had a similar experience to yourself with my mum. She was seeing children under her hospital bed. Was a bit doolally. Turned out she had a Urinary Tract Infection, that is sometimes misdiagnosed as dementia. Penicillin sorted that one out. She kept having falls tho. In the end tho - she lived in a small village - we got her a live-in unofficial carer, young girl from the village. Person lived in, rent-free, had their own life, just had to make sure she took her medicines and make her a nice cup of tea now and then. Arrangement worked really well for quite a few years til mum had her final fall and broke her hip
 




Joey Jo Jo Jr. Shabadoo

I believe in Joe Hendry
Oct 4, 2003
11,820
My Nan had dementia and lived alone with help from myself, my brother and our Mum who lived local as well as 3 visits a day from home helps. However this wasn't enough, all 3 of us had full time jobs to juggle too so this often left my Nan alone for long periods of the day. She'd call from her home phone to say she was on a train and didn't know where she was etc.

She was hospitalised following a fall. It was becoming increasing apparent that the dementia was getting worse and she needed more care than she was currently getting. She thought the hospital was a WWII barracks and said she could see the bombs falling etc. She was there for a couple of months (moved from Sussex County to Brighton general at some point though).

We were told they were going to discharge her, we basically said if they did that then there would be no-one at her flat to let her in (we had all the sets of keys by this stage anyway) because it was the only way of making someone listen. Thankfully the hospital contacted Social Services and we got a really good social worker (happened to be the mother of an Albion player at the time this story took place) who helped us and got her into a home that cared for her brilliantly for the last 8 months or so of her life. I've no idea what we'd have done if the hospital had called our bluff on the threat to not be there if she was discharged.
 


Thunder Bolt

Silly old bat
My mother in law was admitted to hospital five years ago with an infection, having mild dementia. It took a while for the hospital to get a grip with the infection.
When she could be discharged, it was arranged for her to go into a convalescent home for up to six weeks, which is not going into care, but with a view to going home, which she did. It might be worth discussing along these lines, before deciding on long term care. It’s also possible, that once out of hospital, she may become more lucid, but, if unfortunately, she doesn’t then social services are already in the loop to take it further.
Convalescence is free up to six weeks.
 


Nobby

Well-known member
Sep 29, 2007
2,866
Very sorry to hear about this Bozza.

My Dad went through exactly this same situation.
He was diagnosed with Vascula Dementia although his case didn't appear too bad at first. He was living at home with my Mum, so he was mostly fine for a while.

But, when he was admitted to hospital for an operation, he started to become totally paranoid. At one stage I was phoned in the middle of the night by the Police who he had phoned about the guy in the bed opposite trying to kill him. We just weren't sure whether this was the drugs he was on, or a lack of sleep in the hospital bringing on delusional behaviour.

My Mother was at home and could look after him when he came out. As soon as he returned home he changed back almost completely to the Father who had entered hospital. But after a few months the signs started to re appear.
Within a year he was not able to look after himself, although he did recognise everyone.
And my Mother was unable to lift him from bed if needed, or take him to the loo.

So we were able to organise a Home Carer visit twice a day. Depending on the situation, this can be funded I believe. There will be different levels of Care, and we met up with the Care company to agree a care plan applicable to his (and my Mother's) needs. My Dad was visited at home at 8am and got up from bed, showered (three times a week), and settled into the lounge. In the evening, they came back at 8pm to put him to bed and settle him down for the night. After a bit, My Mum decided that she didn't need the evening visit and so it was reduced to just each morning. We had some of the normal installations fitted - bathroom rails, ramps at the front door etc.
This continued for about six months - when we went to having two visits a day.

It was a pretty worrying time for everyone at the start, and each case is obviously different, but there are some good care agencies out there and we found staff to be generally pretty wonderful.

I really hope you (and your Mum and Aunt) can get through the difficult next few weeks and settle into an amended rythym of life. And hopefully, it's the drugs / hospital that has brought on the paranoia, and she will immediately improve once out.
 




kevo

Well-known member
Mar 8, 2008
9,535
Very sad to hear your situation. If she is in this state all the time and it is not just post-op delirium/caused by medication, then I think they should really be recommending she goes into a nursing home or specialist dementia home. It might not seem to be the kindest solution, but you can still visit her every day and you know she will be being looked after. It is unfair to expect you to look after her at home, even if you have daily carer visits. My mum had a major op in her 80s, and although she was in a reasonable state mentally after the op, physically she wasn't, and they arranged for a fast track into a nursing home. Although she sadly never made it, we were pleased and relieved at the time that this outcome was offered to us.
 


Deadly Danson

Well-known member
Oct 22, 2003
4,417
Brighton
Draining isn't the word. Been dealing with both parents with dementia/Alzheimers/broken hips for the last 4 years. It will become too much very quickly if you attempt to cope yourself. We initially used Agincare who provided a permanent live in carer who was absolutely excellent but eventually it became too much for both him and us and we moved them into Fairdene Lodge Care Home who have been good (although as tough a process as it's possible to have - just heartbreaking). Neither of which are cheap - over £9k a month at the moment. Getting a POA done is a must one way or the other. It's really tricky once older people break hips - Mum did hers 18 months ago and hasn't left bed since and now has virtually no cognitive awareness at all which is tough. I doubt any of this helps in your specific situation but all the best with it and one way or the other get some help as it's too much for one person to deal with for long.
 


Cheshire Cat

The most curious thing..
You might be lucky that your mum only has an infection, but until you are sure I suspect you might have to insist that she wouldn't be safe if she was discharged to home until she is completely recovered from everything if your aunt couldn't cope with her. Caring for someone 24/7 alone will eventually destroy whoever tries it (it did me). You just run out of stamina.

The hospital should have a social worker attached who should be able to help.

On the down side, my Dad became extremely confused and ill to the extent he was nearly sectioned, and that was solved only by him dying soon after.
 


Normal Rob

Well-known member
Jul 8, 2003
5,750
Somerset
My mum had a bad fall last September and currently has self funded care visiting her home. It started of as 2 times per day, and is now 4. On Tuesday the Urgent Care team called me at work to say that she was dying with Chronic heart failure and needed to go into hospital immediately. Mum has never wanted to go back into hospital for reasons of 'health decline'. I went to her house and asked her, just to confirm that my thinking was right. She said he didn't want to go and I supported her. When i asked if she knew what this meant she said 'yes'. She is now on End of Life care at home.
I can't help you Bozza, but strangely knowing that mum's wishes are being respected, and seeing her calm contentedness with her situation, I can see that we are both at peace with the choices we have made. And we wait.
 




chaileyjem

#BarberIn
NSC Patron
Jun 27, 2012
14,565
Really feel for you. Must have been difficult coping. I have been exactly in this situation @Bozza - and relatively recently. . My 87 year old Dad had a fall in November - he is prone to various falls as he has meniere's disease. My sister said he'd been deterioriating for a while though in terms of his memory - she used to see him daily, and was effectiveky caring for him (shopping, trips out, money) and had hinted that he was starting to fade and there was more paranoia. But he was til then fairly independent (living by himself, cooking for himself, cleaning, gardening) . I'd noticed that on various trips to the football together he'd become more remote and found it difficult to have conversations with strangers (the usual chats on the coach over to the Amex, or standing in the queue for a pie, bloke sat next to us in the ESU. ) so it did come as a shock.
When submitted to the Sussex just before christmas - things really deteriorated and they diagnosed delirium at first . That first few weeks in there were very scary - tears, accusations that the patients / staff were out to get him, threats to kill himself etc. He calmed down after a while and although its not completely clear -not sure if they can ever say his behaviour is because of x or y - then he was finally diagnosed of "dementia like symptoms" . He stayed in the Sussex for 6 weeks or so through christmas - including a very bizarre Christmas Day where he had no idea what time it was let alone a day for presents etc. - and then we had the choice you had - discharge back home - with extra support - or to a care home (ie: a hospital bed but in a care home where other dementia patients were staying).
We really didn't think he would be safe at home without 24/7 care - and i was worried about my sisters wellbeing (as main carer - she lives round the corner) - if we did that - so we went for a discharge to a home. That was not great ! and also quite tough . The home itself was a bit grim too .
I wrote about it here. https://www.wsc.co.uk/stories/final...ootball-cut-through-the-fog-of-dads-dementia/
He became even more disorientated , sometimes scared and very confused and irritable.

We then as a family had realised that this was it. He was now going to be in a care home - for his safety - for the immediate future - and the choices were pretty stark. As he owned his own home then the support was limited . 14 weeks of care only. So we took the pretty tough decision to sell his house, take control of his limited savings and start planning for a life paying for a care home.
Now we're in June then the house is nearly sold, he's in a much better care home in Hove (although i despair at how ltd it is in terms of stimulation). He's ok but certainly not getting better and he's even more forgetful, still has bouts of paronoia , and just isn't grounded - keeps wondering why all the people around him seem ill and wonders why they aren't put in a home...

(My brother - its been really helpful having a family helping out - has done a lot of the financial / legal stuff - eg: POA, selling the house, solicitors etc, and my sister has managed the house itself/neighbours, his clothes, and recently - clearing it. Not sure i could have done it all by myself. I've done things like the Denial of Liberty assessment, dealing with social workers, and care home managers. etc)

Its been pretty tough, stressful but i think we've done the right thing for his safety at least. he still loves our visits , especially when i bring our dogs. And we chat on the phone as well. Financially we're lucky because of the home so i don't know if thats a choice you have - but effectively he has a long term financial certainty / re paying for home. But of course that was also going to be my sons (his grandsons) inheritance / house deposits etc.

He still asks me about the Albion. We went to the Albion for 50 years on and off.

Hope all ok. All the best. xx
 
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BrightonCottager

Well-known member
Sep 30, 2013
2,543
Brighton
Very sorry to hear this @Bozza . I've been through something similar with my mum and I echo the advice of others:
- get private carers in as a short term measure
- get POA (takes half an hour online to do the form on gov.uk then find witnesses to countersign)
- try to get a dementia assessment arranged
- get checks for UTI
- research care homes in the area
- get in touch with social services
- Alzheimers society and Age UK websites are very good. The NSC equivalent on Alzheimers Society is almost as useful as NSC!
 


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