24/7 home care vs care home.

Champers

Registered User
Jan 3, 2019
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I’ve just received a call from a friend of MIL who has visited her this evening.

Although MIL is home, she is deeply unhappy. Her friend told her it was her choice to come home, even though we had arranged a lovely care home for her. Her reply was, “Why did they not tell me? Everything was taken out of my hands.”

The new carer, when putting her to bed told both MIL and her friend that she should never have been sent home without everything in place and MIL replied that she, “was sent home because they were sterilising the ward.”

She has again said she “just wants to lay down and die.”

I could weep.
 
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silversea2020

Registered User
May 12, 2019
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It’s just a very, very very sad state of affairs when all you were trying to do was your utmost - anyone could see that reading your previous thread etc....as Canary has said, right now you can’t do anything....its got to fail and then things will change - been thinking of you lots
 

Louise7

Volunteer Host
Mar 25, 2016
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You mentioned in your other thread that your MIL has recently been diagnosed as clinically depressed by her GP. Has she been prescribed something to help with this?
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
This should never have been about what you mil wanted or thought she wanted or what would make her happier but what would best support her needs. As others have said you need to step back and let things fail.
Thinking of you.
 

Trekker

Registered User
Jun 18, 2019
211
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London
As well as my own mother with early stage Alzheimer’s, my 90 year old MIL is rapidly deteriorating with acute memory issues. She was hospitalised with a burst diverticulum in April and it was decided by the medics that she was too high a risk to operate on - diabetes, spinal stenosis, severe arthritis so very limited mobility. Until this episode, she had been living independently but with a casual arrangement with a friend who would do housework and help her shower.

Her memory hasn’t been brilliant for a while but since she has been discharged, she can’t recall a conversation from 5 minutes ago and has told us quite a few things that she has definitely imagined. She has no idea what day it is and repeats conversations endlessly. We have arranged 24 home care through an agency and already one carer has given up and the second looks like she’s going the same way. Both girls were absolutely lovely but she wouldn't let either them out of her sight, keeps them up all night with her demands to be moved from her bed to the living room, then ten minutes later she wants to go back to bed. If they try and persuade her to stay put, she cries and screams like a child. The current carer is on her knees with exhaustion. We’ve had to fund an additional carer to sit with MIL whilst her own one takes her two hour rest otherwise she’s calling her for the toilet or for company. She has no recall of any of these issues the next morning,

We both feel that live-in care isn’t really working. As well as the physical issues, MIL just sits there. The TV is on but it’s just background noise. She doesn’t read. The lovely carer has tried to play simple board games with her in an attempt to stimulate her and whenever she has suggested taking her out in her wheelchair, MIL just makes an excuse. She falls asleep during conversations too. No wonder she isn’t sleeping at night as she’s not really doing much doing the day. My husband and I are beginning to feel that at least in a care home there would be activities, other people, comings and goings, trips etc. We’ve had a look around one that was recommended and it was really homely with an excellent QCC report but whenever we talk about just having a taster day, MIL shouts that she’s NOT going into a home and we can’t make her, although she regularly tells us she wants to die and wishes she could just be put down. To compound everything, she complained to the care agency manager, when she was visiting, that we were pressurising her and now a report has been filed about us. All we want is to find the best solution for her, we have no ulterior motive but she’s making us feel like villains.
I’ve had a look at the NHS’s definition of mental capacity:

The Functional Test.

• The ability to understand the decision
• The ability to retain information about the decision
• The ability to use and assess information about the decision
• The ability to communicate their decision
If a person lacks capacity in any one of these areas then this represents a lack of capacity.



MIL certainly cannot retain ANY information about decisions. She forgets a conversation or meeting a person within a few minutes and it’s debatable that she is able to use and assess information about a decision as she always asks us to answer for her.

I see how a social worker spending 5 minutes talking to her can possibly make a total judgement on her mental cognition. We have a face to face meeting with him tomorrow and I’m tempted to say to him, “Please go back to her and have a chat about what you discussed yesterday. See if she really can recall what you talked about and even if she remembers your face.”

We told her at 2:00pm this afternoon that the carer had returned to London, which she acknowledged and accepted. We all said, including her, that we would miss her and what a lovely girl she was.

By 4:00pm, she was telling the SW that she wasn’t going in for respite care as there was a carer living in her house when she got home. I would say that is clear evidence of being unable to retain information.

I’m incensed that a do gooder has interfered and upset the smooth transition and made a huge assumption about our intentions. We only want the best for MIL. We initially strongly supported the original plan for live in care but it has been a series of disasters and become more and more apparent that her level of need is far in excess than can be provided. The paramedics have been called out on several occasions, falls, struggling to breathe and pain relief as well as three hospital admissions followed by discharges before she is ready.

Sorry to rant. x
Dear Champers Hold fast, it is clearly not safe for your MIL to go home. Tell SS what you have told us, ie no carers in place, 24 hour live in care failed, and you will not arrange replacement as you would thereby be endangering your MIL and are not willing to do so. This leaves them with choice of either agreeing to nursing home or making their own at home care arrangements. If they do the latter it will be inadequate and will fail and hopefully it will not come to this, but if you move heaven and earth to try and make it work, under pressure from the SW, they will let you. Sorry If this sounds harsh but perhaps, if they insist on her going home, you need to let them arrange everything, so that when the inevitable crisis follows they finally get it and having to act appropriately. One more thought: after the medical events you describe, it is quite possible that she is often in pain and needs a nursing home environment so that as required pain relief can be more safely given - at home carers are not nurse and cannot do so as readily. With more nursing input, in a proper facility, and therefore hopefully in less pain, she may settle to more manageable care needs. Good luck x
 

canary

Registered User
Feb 25, 2014
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South coast
Be careful - you dont want to jump the gun. Your words will not be seen to be enough - you will need concrete evidence.
The SW will not listen to you saying that she is not happy at home. Once the care providers start saying that they are unable to meet her needs ask for this in writing (but dont push for them to say it, it has to be seen to come from them, not you) If you have to call an ambulance, or the police (because she gone walkabout, for example) this will also add to the paper trail.

What you ultimately need is actual evidence that live in care is not enough and has failed, causing her to be at risk. Being at risk is SS's trigger for change and is the only thing that will over-ride her percieved desire to be at home.
It will happen, bide your time. Dont try and provoke it or it may end up at the court of protection, which you really, really dont want.
 

silversea2020

Registered User
May 12, 2019
81
0
Dear Champers Hold fast, it is clearly not safe for your MIL to go home. Tell SS what you have told us, ie no carers in place, 24 hour live in care failed, and you will not arrange replacement as you would thereby be endangering your MIL and are not willing to do so. This leaves them with choice of either agreeing to nursing home or making their own at home care arrangements. If they do the latter it will be inadequate and will fail and hopefully it will not come to this, but if you move heaven and earth to try and make it work, under pressure from the SW, they will let you. Sorry If this sounds harsh but perhaps, if they insist on her going home, you need to let them arrange everything, so that when the inevitable crisis follows they finally get it and having to act appropriately. One more thought: after the medical events you describe, it is quite possible that she is often in pain and needs a nursing home environment so that as required pain relief can be more safely given - at home carers are not nurse and cannot do so as readily. With more nursing input, in a proper facility, and therefore hopefully in less pain, she may settle to more manageable care needs. Good luck x

Too late....,Champers MIL is already back home - as from yesterday - the decision was made by ‘others’
 

Champers

Registered User
Jan 3, 2019
239
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Phone call received from MIL this morning - she does have a carer with her incidentally, but this is what she said as I recorded it:

MIL: Please come and help me! (In tears)
OH: What’s wrong mum?
MIL:They’ve thrown me out of hospital.
OH:No mum, you kept asking to go home.
MIL: I didn’t. They threw me out because they had an infection and needed to sterilise the ward! (This is interesting. I find it strange that she would have thought this up on her own. I hope someone hasn’t ‘lied’ to her)
Oh god, you must help me.
OH: Mum, we’ll come up but you’ve got a carer with you though, haven’t you?
MIL: Yes, but I want you here to help me.
OH: But mum, it’s out of our hands now.
MIL: Oh god. What am I going to do?
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Im sure this is very upsetting ((((((((((((((((((((((((hugs))))))))))))))))))))
Did you speak to the carer? I would be helpful if the carer knew that things have been taken out of your hands and you have been told not to interfere. Hopefully the carer is aware of the situation.
 

Champers

Registered User
Jan 3, 2019
239
0
Thanks again so much everyone. :D

Visited MIL at home today. She couldn’t remember this morning’s distressed phone call at all - even when I played recording back to her. Explained that SS were now in charge of everything but we will still visit as family, but will not be handling her finances, care arrangements etc. I think OH then made a bit of a mistake by elaborating and telling her that we still thought she would she would be so much better for a short time in a care home.

5 minutes later, in front of us, she said to the visiting OT, “They’re going to sell my house and put me in a home!” We had made absolutely no mention of selling the house - I couldn’t believe it. With her making statements like that to medical staff, we’re even further on the back foot. She clearly doesn’t have any logic, retention or understanding of what is happening to her. She also told the OT that, “I was chucked out of the hospital you know. I didn’t want to go but they wanted to sterilise the ward so they wanted me out!”

When OH asked her afterwards why she had said we were going to sell the house, she denied ever saying such a thing and again reiterated that she wanted us in charge of her affairs.

I would say the carer is an older woman this time and I think she is very much on the ball. She intimated to me that she understood when I explained we weren’t trying to be awkward to her personally, it was just as a result of circumstances.

Still, I guess MIL must have mental capacity as we’ve been told so in no uncertain terms. o_O
 

Trekker

Registered User
Jun 18, 2019
211
0
London
Thanks ago so much everyone.

Visited MIL at home today. She couldn’t remember this morning’s distressed phone call at all - even when I played recording back to her. Explained that SS were now in charge of everything but we will still visit as family, but will not be handling her finances, care arrangements etc. I think OH then made a bit of a mistake by elaborating and telling her that we still thought she would she would be so much better for a short time in a care home.

5 minutes later, in front of us, she said to the visiting OT, “They’re going to sell my house and put me in a home!” We had made absolutely no mention of selling the house - I couldn’t believe it. With her making statements like that to medical staff, we’re even further on the back foot. She clearly doesn’t have any logic, retention or understanding of what is happening to her. She also told the OT that, “I was chucked out of the hospital you know. I didn’t want to go but they wanted to sterilise the ward so they wanted me out!”

When OH asked her afterwards why she had said we were going to sell the house, she denied ever saying such a thing and again reiterated that she wanted us in charge of her affairs.

I would say the carer is an older woman this time and I think she is very much on the ball. She intimated to me that she understood when I explained we weren’t trying to be awkward to her personally, it was just as a result of circumstances.

Still, I guess MIL must have mental capacity as we’ve been told so in no uncertain terms. o_O
So sorry you are being made to feel this way x
 

Champers

Registered User
Jan 3, 2019
239
0
Despite being told by hospital and care home staff that MIL would settle down once she was at home, we are now receiving 2-3 phone calls every morning from her begging for us “to do something” and “please help me” even though she has someone living with her 24 hours a day. I’m not quite sure what she expects us to do as she’s got her wish, which was to return to her own home.

I suspect it’s part of her dementia because when we visit or return her call, it’s as though it was someone else made the call and she seems completely different. I had a chat with her live in carer today - an older woman who seems a lot more grounded and practical than the young staff that MIL had before her last hospital admission. She said without any prompting from me that she believed MIL should be in residential care for social stimulation and activity and also that MIL was being a little bit naughty and manipulative with her phone calls to us. She told me that MIL, exactly as before, was just sitting there refusing offers to be taken into the garden and ringing her few friends repeatedly to come and visit, persisting and getting angry even if they have alternative arrangements. Interestingly, we had a call on Saturday morning from her pleading with us to come over as she had had a bad fall. We thought it was a bit odd because, if it was that serious, we would have heard from the carer. When I spoke to her, she said that MIL had caught her foot on a door frame whilst being aided to the loo and she certainly hadn’t even stumbled and the carer said she wondered if it was attention seeking.

MIl is very cross that her bed has been replaced by a hospital type one and told me off for not preventing it’s removal, despite her sitting there whilst it was happening. She then complained that no one warned her that all these things would happen if she returned home (we did until we were blue in the face!) and why couldn’t WE just ring up and sort things out. When she tried to give us her bills and paperwork and we told her that we couldn’t do it, she screamed like a child. We thought we had a breakthrough when she said, “We’ll, I think I might have to go into a home.” until she then said, “Because I can’t put my socks on myself.” :rolleyes: And they still say she has mental capacity.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
(((((((((((((((((((((((((hugs)))))))))))))))))))))) @Champers
I know its upsetting, but I think you are handling it right. At least the carer is experienced and is keeping your mum safe.