Should we move mum or bring her back?

[PMM1485]

I've been looking after mum since lockdown began. She had Vascular Dementia which had plateaued and she was fine at first, then got a UTI and probably had a TIA as a result. She suddenly got very much worse. The UTI had now been cleared but she remains very confused especially at night and had quite a few toilet accidents. We were very lucky to be offered a respite bed at a local care home at short notice. I feel a little bit of a fraud about that as reading on here I know people have had to deal with things for so much longer, but I know she needed the care I couldn't give her. She has now improved physically though we have to face that the mental capacity may be a permanent thing. I find that hard, as she was fine before.
Previously we had discussed options of getting in more care at home ( don't think that is any longer viable) or a care home up where I live which is some distance away. However the respite placement has now rather forced a quicker decision. Is it best for her to leave her be in the home longer term or move her to another home? We sort of built up the respite a bit by saying it would be like a holiday but the home is far from being a hotel. It looks a bit shabby from the outside and not many pictures on the website of inside. COVID has meant that we couldn't go in with her so I can't see inside. She says it's dingy and horrible and everyone ignores her. I appreciate it is common for loved ones not to settle, I am just not sure if it is the right place long term. It does have an excellent report where the assessor was unannounced and the GP gives the placed a glowing report. The online reviews are also good. Mum just seems bored and unengaged.
I am just in a bit of a spin as to what to do. I promised mum she could come back after 2 weeks and we could make a decision (foolish in hindsight I know). As it is evident she will need more care would it be too stressful and cruel to take her out, only to go somewhere new afterwards. I thought it would be good for her to have somewhere I could visit and take her out for days, but heaven knows when that might be viable given curent conditions.
When she was here I was desperate for some breathing and thinking space but Saturday is hanging heavy and all I want to do is see her. I could go and wave at her from the window but that might unsettle her. I don't know ☹.

 

[TNJJ]

I've been looking after mum since lockdown began. She had Vascular Dementia which had plateaued and she was fine at first, then got a UTI and probably had a TIA as a result. She suddenly got very much worse. The UTI had now been cleared but she remains very confused especially at night and had quite a few toilet accidents. We were very lucky to be offered a respite bed at a local care home at short notice. I feel a little bit of a fraud about that as reading on here I know people have had to deal with things for so much longer, but I know she needed the care I couldn't give her. She has now improved physically though we have to face that the mental capacity may be a permanent thing. I find that hard, as she was fine before.
Previously we had discussed options of getting in more care at home ( don't think that is any longer viable) or a care home up where I live which is some distance away. However the respite placement has now rather forced a quicker decision. Is it best for her to leave her be in the home longer term or move her to another home? We sort of built up the respite a bit by saying it would be like a holiday but the home is far from being a hotel. It looks a bit shabby from the outside and not many pictures on the website of inside. COVID has meant that we couldn't go in with her so I can't see inside. She says it's dingy and horrible and everyone ignores her. I appreciate it is common for loved ones not to settle, I am just not sure if it is the right place long term. It does have an excellent report where the assessor was unannounced and the GP gives the placed a glowing report. The online reviews are also good. Mum just seems bored and unengaged.
I am just in a bit of a spin as to what to do. I promised mum she could come back after 2 weeks and we could make a decision (foolish in hindsight I know). As it is evident she will need more care would it be too stressful and cruel to take her out, only to go somewhere new afterwards. I thought it would be good for her to have somewhere I could visit and take her out for days, but heaven knows when that might be viable given curent conditions.
When she was here I was desperate for some breathing and thinking space but Saturday is hanging heavy and all I want to do is see her. I could go and wave at her from the window but that might unsettle her. I don't know ☹.

Hi. Maybe leave your mum where she is at the moment. I extended dad’s respite from 2weeks to a month. My dad has VD as well . Dad is at home bored and doesn’t want to do anything. But he was also like that at the home.He is at the “moderate “ stage of dementia and is now having bowel accidents.
I also find that dad was happy and no problem with the carers but with me everything was wrong and exaggerated so I tended to take things he said with a pinch of salt sometimes. He is still the same now at home..
Whatever you decide it is your decision. I hope I have been of some help((hugs))I know it is not easy.

 

[canary]

Hi @PMM1485

Please, please remember this

The UTI had now been cleared but she remains very confused especially at night and had quite a few toilet accidents. We were very lucky to be offered a respite bed at a local care home at short notice.. ............<snip>............. She has now improved physically though we have to face that the mental capacity may be a permanent thing.

You cannot bring her home in this condition - her needs are now too great for you to be able to cope with at home. This will require a whole team of people, in shifts, over 24 hours a day.

With regards to the present care home - it is normal for people with dementia to say that they hate it, they want to go home, that they have been abandoned, no-one cares about them etc etc. It will take a good couple of months for your mum to settle. Is it still within 14 days of being discharged from hospital? If it is then remember that your mum is still being isolated because of covid, and if you move her she will have to go through another 14 days isolation at the new place.

The care home mum was in looked shabby and dated, but the care she received was excellent. Its the care that you have to look at. It doesnt matter how beautiful the surroundings are, if the care is poor.

I would honestly give it longer to see how she settles in. If you find that you have to move her again, I doubt that it will be overly traumatic, although it is best if you can avoid it. Once she settles - in particular once she is allowed to mix with the other residents, you may find that she is much happier. At this stage you have to change from enabling their wishes, to implementing their needs.

 

[PMM1485]

She wasn't isolated. She didn't go into hospital, I managed treatment here.
I did ask about quarantine but they said the home was COVID free and everyone has been tested and as mum had been in isolation and had no symptoms then it was not an issue. As it was a GP bed (and I was a bit desperate) we assumed it was ok.
She is much improved and bloods now back to normal.

 

[canary]

She wasn't isolated.

Sorry, misunderstood

The rest of my post still stands, though

 

[Rosettastone57]

It's normal for the person with dementia to appear to be bored and unengaged in the care home when their family members are visiting and to say they are unhappy. My mother-in-law told me the carers ignored her in the home, it was a "living hell ". She was always telling us she wanted to go home. The care home had a Facebook page and there she was in one of the uploaded photos smiling and taking part in the activities.

 

[PMM1485]

Sorry, misunderstood

The rest of my post still stands, though

Very true. Thanks for your advice. It is always good to hear from people who have been there before.

 

[Banjomansmate]

Having spent time in respite and “apparently “ hated every minute, if you bring her home and then find you cannot cope you will have the Devil’s own job to get her to agree to go anywhere else and unless she is self funding you will have to get the LA to eventually agree to her going back somewhere which may not have such a good report. Things are only going to get worse so my advice would be to keep her there if the home is happy to do so. If she is only in a respite bed they may not have a permanent place available, then your problems really could start.

 

[Jale]

According to our Mum, who is in a nursing home, she is never fed, nobody takes her a drink and she never sleeps - we have seen her (by peeping round a corner) and she joins in activities, takes great delight in the sweets and cakes that are passed around and is now eating breakfast and dinner and sometimes her tea as well. I know that Mum plays me up with some of the things that she comes out with and I think you have to take what someone with dementia says with the proverbial pinch of salt. Mum has only had one UTI since being in the home - nearly 2 years now - whereas at home she was getting them frequently, she is safe and she is clean and well looked after. Don't worry too much as to how the home looks, it is what goes on inside that matters and the care that they get. Personally I would leave her where she is at the moment if possible and when restrictions are eased/lifted and you are able to have a proper look round make a decision then, speak to staff and other visitors.

Best wishes

 

[Grable]

I think everybody on here who has had to move their loved one into a care home will be empathising with your dilemma, PMM. My mum passed away three years ago, but we're coming up to the anniversary of when I finally had to bite the bullet and find a place for her in a home. Even now, although I know it was the right thing to do, I feel terribly guilty - as though I let her down and should have been able to look after her myself.

From what you say, it seems pretty clear that your mum needs to be in a care home, where she will be safe and cared for. If you are confident that that is happening where she is - and if it's not too difficult for you or others to visit - then I would say she should stay put. You may need to tell a white lie at this point, for example saying that she's being shielded where she is and it would be too dangerous to take her home now that lockdown is easing. So, yes, my opinion is that, if the care home has a place for her, you should leave her there at least for a while longer.

 

[Susan11]

I've been looking after mum since lockdown began. She had Vascular Dementia which had plateaued and she was fine at first, then got a UTI and probably had a TIA as a result. She suddenly got very much worse. The UTI had now been cleared but she remains very confused especially at night and had quite a few toilet accidents. We were very lucky to be offered a respite bed at a local care home at short notice. I feel a little bit of a fraud about that as reading on here I know people have had to deal with things for so much longer, but I know she needed the care I couldn't give her. She has now improved physically though we have to face that the mental capacity may be a permanent thing. I find that hard, as she was fine before.
Previously we had discussed options of getting in more care at home ( don't think that is any longer viable) or a care home up where I live which is some distance away. However the respite placement has now rather forced a quicker decision. Is it best for her to leave her be in the home longer term or move her to another home? We sort of built up the respite a bit by saying it would be like a holiday but the home is far from being a hotel. It looks a bit shabby from the outside and not many pictures on the website of inside. COVID has meant that we couldn't go in with her so I can't see inside. She says it's dingy and horrible and everyone ignores her. I appreciate it is common for loved ones not to settle, I am just not sure if it is the right place long term. It does have an excellent report where the assessor was unannounced and the GP gives the placed a glowing report. The online reviews are also good. Mum just seems bored and unengaged.
I am just in a bit of a spin as to what to do. I promised mum she could come back after 2 weeks and we could make a decision (foolish in hindsight I know). As it is evident she will need more care would it be too stressful and cruel to take her out, only to go somewhere new afterwards. I thought it would be good for her to have somewhere I could visit and take her out for days, but heaven knows when that might be viable given curent conditions.
When she was here I was desperate for some breathing and thinking space but Saturday is hanging heavy and all I want to do is see her. I could go and wave at her from the window but that might unsettle her. I don't know ☹.

Mum had to go to a CH when Dad was in hospital and SS wouldn't let her go back home ! She went to the local CH for respite but when Dad died we decided to bring her down to live near us about 200miles , three and a half hour drive away. We looked at a dozen care homes and found a really nice one. We explained everything to Mum and all set out. Well it was hell. She threatened to get out of the car, told us to leave her by the side of the road as someone would take her home and when we got to the CH she was having none of it. I would have had to get a Dr to sedate her to leave her there. I rang the CH in Lancashire and luckily her room was still available so we took her back ...another three and a half hours. They welcomed her with open arms and tea and cake ! We hadn't taken into account that everyone in the original CH sounded and looked like Mum. She felt comfortable in the surroundings. It was not the solution I wanted as I was hoping to visit Mum frequently and before Coronavirus I saw her every other weekend. Now i haven't seen or spoken to her for 16 weeks. I have photos that the staff have taken for me. Moving your Mum near you is not an easy decision to make.
Best wishes
Susan

 

[PMM1485]

Mum had to go to a CH when Dad was in hospital and SS wouldn't let her go back home ! She went to the local CH for respite but when Dad died we decided to bring her down to live near us about 200miles , three and a half hour drive away. We looked at a dozen care homes and found a really nice one. We explained everything to Mum and all set out. Well it was hell. She threatened to get out of the car, told us to leave her by the side of the road as someone would take her home and when we got to the CH she was having none of it. I would have had to get a Dr to sedate her to leave her there. I rang the CH in Lancashire and luckily her room was still available so we took her back ...another three and a half hours. They welcomed her with open arms and tea and cake ! We hadn't taken into account that everyone in the original CH sounded and looked like Mum. She felt comfortable in the surroundings. It was not the solution I wanted as I was hoping to visit Mum frequently and before Coronavirus I saw her every other weekend. Now i haven't seen or spoken to her for 16 weeks. I have photos that the staff have taken for me. Moving your Mum near you is not an easy decision to make.
Best wishes
Susan

Thanks so much Susan. We are now coming around to that idea. Moving mum from the south to the north just might not be a wise idea. If she'd hadn't suddenly got worse in terms of mental capacity and we were not in the grips of a pandemic. I now realise my dreams of seeing her everyday with trips at the weekend were probably never more than that, dreams.

I just want her to be happy and settled somewhere. She still doesn't like where she is. Looking at other options over the next couple of days.

 

[Susan11]

Thanks so much Susan. We are now coming around to that idea. Moving mum from the south to the north just might not be a wise idea. If she'd hadn't suddenly got worse in terms of mental capacity and we were not in the grips of a pandemic. I now realise my dreams of seeing her everyday with trips at the weekend were probably never more than that, dreams.

I just want her to be happy and settled somewhere. She still doesn't like where she is. Looking at other options over the next couple of days.

I looked at lots of homes for Mum and quite a few of them told me they were a nice quiet home. I chose the one for Mum as even from outside the home standing at the front door I could hear the sound of laughter. I liked the idea that Mum was with people who were laughing and enjoying themselves and I have not been wrong. The carers are warm welcoming people who are bright and cheerful. The Manager's door is always open and as residents have to walk past her office to go from the lounge to the dining room she is really in the centre of things and speaks to each resident every day. I hope you find somewhere where your Mum will be happy.
Best wishes
Susan