MIL refusing to leave hospital but not bad enough for residential care

kumamoto467

New member
Jun 5, 2024
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Hello all,

I wondered if I could draw on your collective wisdom.

My MIL was diagnosed with alzheimer's about 6 months ago. She's 81 and has been showing symptoms since April 23.
Her main symptoms are short term memory loss. She lives alone and can wash herself, dress herself, cook, buy food. Her mobility is good. No other serious health conditions.

She has a carer once a day. They don't need to do much as she is physically able, but they check she is throwing out old food, check if she needs shopping (there is a supermarket in sight of her lounge window, literally a stone's throw from her front door) and just check on her and do a bit of washing up if needs be.

In the last three months she has taken to calling my husband, her son, several times a day. This has escalated to her getting passers by and neighbours to call on her behalf too.

The cycle seems to be, the carer comes in the morning. This seems to over stimulate her, agitate her. Either way she will often make her first call just after they have gone. Although she can't remember they have been. She is obsessed with calling ambulances. All the calls are based on getting us to call an ambulance for her, or her telling us she's already called one, or she's waited for a stranger to pass her house and asked them to call one.

The paramedics arrive, assess her, see she is ok, apart from the anxiety, calm her down and leave.

Sometimes they take her to hospital. The hospital usually take the view of 'there is nothing we can do for this woman/nothing physically wrong with her' and she gets sent home the same day. No overnight stay.

This month this has escalated to her being kept in hospital overnight. There was a mix up with discharge paperwork that meant she was in hospital for over a week. Yesterday, the paperwork was finally corrected and they discharged her.

Except, despite complaining she didn't want to be in hospital (after spending months calling ambulances to get them to take her to hospital) she refused to get out of the hospital transport vehicle. Hospital transport called us saying that they were at her house but she was refusing to get out vehicle. This went on for over an hour. Eventually they managed to persuade her.

Whereupon, her social worker got called and had to go to her house. She absconded, whatever that really means we don't know yet, and she created such a scene and was taken back to hospital because that is what she wanted. The social worker says she is nowhere near the stage that she needs to be in residential care. She is asking to stay in hospital.

So now she's bed blocking again and we are at stale mate.

The idea was that her care at home would be upped from one care visit a day, to four. But that was never given the chance to start, because she created such a scene at discharge.

Has anyone experienced this sort of thing?

My husband thinks she might also have vascular dementia although this has not been confirmed (she'll often complain she is dizzy, she has high cholesterol etc).

What would next steps be?
 

Violet Jane

Registered User
Aug 23, 2021
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Your MIL's behaviour suggests - contrary to what the SW says - that she is ready for a care home. It seems that she has lost her attachment to her own home and wants to be somewhere where people are around her all the time. Do not get involved in bringing her home. Tell the SW that if s/he thinks that your MIL should be at home s/he will have to facilitate this. If she returns home she will almost certainly start ringing for ambulances again.
 

Canna

Registered User
Jan 24, 2022
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Mobility isn't the only criteria for needing to go into a care home, and in my experience the people who suggest that someone is "nowhere near ready for a care home" don't have direct experience of dementia.
 

kumamoto467

New member
Jun 5, 2024
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It seems like such a huge leap in such a short space of time I guess. In between the anxiety episodes, she has many friends visiting her, is going out for her daily walk, completing household tasks alone. It seems extreme to go from own home to care home within 3 months due to anxiety. Once she's in hospital, she doesn't want to be there. What if she doesn't want to be in a care home once she's in one? Right now, she has friends visiting and is going out daily.
 

Rosettastone57

Registered User
Oct 27, 2016
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The constant phone calls to you and emergency services, the refusal to leave the transport, creating scenes, absconding, refusing to leave hospital are indicative to me that such a high level of anxiety cannot be effectively managed at home. Eventually even with having 4 carer calls a day, the care package will quickly fail. I agree with @Violet Jane she needs constant reassurance. If Social Services are paying then you will have to go with the extra carer calls, if she's self-funding then that gives you opportunity to sort out carers yourself. You say she doesn't want to be in hospital yet, earlier she was asking to stay?
 

kumamoto467

New member
Jun 5, 2024
6
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The constant phone calls to you and emergency services, the refusal to leave the transport, creating scenes, absconding, refusing to leave hospital are indicative to me that such a high level of anxiety cannot be effectively managed at home. Eventually even with having 4 carer calls a day, the care package will quickly fail. I agree with @Violet Jane she needs constant reassurance. If Social Services are paying then you will have to go with the extra carer calls, if she's self-funding then that gives you opportunity to sort out carers yourself. You say she doesn't want to be in hospital yet, earlier she was asking to stay?
Yes it's very confusing. She seems obsessed with going to hospital, then when she arrives there she says she doesn't want to be there. She got to the hospital last month, and said she couldn't be bothered waiting (she'd been there two hours) and simply walked out and got a taxi home. When we called her at home she was bubbly and happy to be home. They tried to start her on anti-anxiety medication a couple of weeks ago but it seems that this got interrupted by her hospital stay, she wasn't given this while in hospital. I called the dementia helpline and we talked about giving it time for the anti-anxiety medication to kick in - which I believe can take up to 4-6 weeks. Only we don't know how much she has had or now where she is on that journey. I guess we are trying one thing at once strategy. But the system is chaotic.
 

kumamoto467

New member
Jun 5, 2024
6
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Another confusing aspect to it is we brought her to our house last month for the day, but after a couple hours she was collecting her shoes and telling us she wanted to go home. It also seemed to make her anxiety worse being around more people. So we don't really know what to do. I've asked a few people in real life who have family member with alzheimer's, diagnosed many years ago, and they have both said that this sort of anxiety does not feature in their relative's lives. So we are a bit stumped. I am also wondering, could the current anxiety lessen as she moves further to later stages. We really have no idea what to do.
 

Sirena

Registered User
Feb 27, 2018
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She is at the stage of 'wherever she is, that is where she doesn't want to be'. It is because she is distressed/anxious/uncomfortable due to the confusion caused by her dementia, and she registers it as being due to 'where she is'. She thinks there is somewhere she can go where everything will feel alright again. We know that's not the case.

I agree she needs to move to a dementia care home. She needs company 24/7 to reassure and help her. This was the case with my mother, who did okay with at-home care - until she suddenly didn't. Fine when the carer was there, but as soon as they left and she was alone, she panicked. The neighbours got very fed up with having to reassure her and take her back home.

I moved her to a care home and within a few weeks she had settled in and loved it. She was still fully mobile and used to walk around the care home and chat to the staff, and her anxiety disappeared. I am pretty sure Social services would have said it was too early for her to move to a care home, but fortunately as she was self funding I didn't need to ask them. It was absolutely the best thing for her.
 

Suzysheep01

Registered User
Jan 14, 2023
219
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My mum ( vascular dementia) had awful anxiety. Called the ambulance many a time through panic attacks and anxiety. Thought she was dying. It was a very traumatic time for us as mum had never had anxiety issues before. Since being in the home her panic and anxiety has gone…. But she now sundowns and demands to be taken home to her children on a regular basis.
 

kumamoto467

New member
Jun 5, 2024
6
0
She is at the stage of 'wherever she is, that is where she doesn't want to be'. It is because she is distressed/anxious/uncomfortable due to the confusion caused by her dementia, and she registers it as being due to 'where she is'. She thinks there is somewhere she can go where everything will feel alright again. We know that's not the case.

I agree she needs to move to a dementia care home. She needs company 24/7 to reassure and help her. This was the case with my mother, who did okay with at-home care - until she suddenly didn't. Fine when the carer was there, but as soon as they left and she was alone, she panicked. The neighbours got very fed up with having to reassure her and take her back home.

I moved her to a care home and within a few weeks she had settled in and loved it. She was still fully mobile and used to walk around the care home and chat to the staff, and her anxiety disappeared. I am pretty sure Social services would have said it was too early for her to move to a care home, but fortunately as she was self funding I didn't need to ask them. It was absolutely the best thing for her.

Thank you Sirena this is useful information.
 

kumamoto467

New member
Jun 5, 2024
6
0
My mum ( vascular dementia) had awful anxiety. Called the ambulance many a time through panic attacks and anxiety. Thought she was dying. It was a very traumatic time for us as mum had never had anxiety issues before. Since being in the home her panic and anxiety has gone…. But she now sundowns and demands to be taken home to her children on a regular basis.
It's awful isn't it. I guess there is no perfect solution.