How to decide when it's time for a care home?

[update2020]

Hi,
For those of you who are at or have already past the stage of putting a loved one into a care home, how did you decide it was the right time? Apart from obvious things like leaving the gas on, wandering/getting lost etc, what were your reasons for deciding the time was right?
My mum still lives on her own and isn't doing anything that particularly makes her unsafe, but she worries and mothers a lot and we generally can't get her interested in doing anything. She told a relative last week "I just can't be bothered to do anything any more". That makes me feel really sad for her because physically, she is fairly healthy. She has always been very opposed to going into a home and she still wouldn't do so voluntarily, even though I do think she would benefit mentally from the constant presence of other people and from activities. Unfortunately, we all work full time so can't be with her all the time, although one of us goes to see her pretty much every day. She phones me a lot, and worries about me/us even more e.g. if it's raining/cold/dark.
I just don't know whether by thinking about a care home, I'm thinking more about making my/our life easier (which makes me feel guilty) or more about making life better/more enjoyable for mum.....

hi! Your main concern seems to be that your mother lacks interests and activities rather than that she is unsafe, so I would look for a solution that addressed that first. It may be some kind of supported living arrangement (but perhaps not a full on care home yet) or it may be a 'befriender' (paid or unpaid) who will provide your mum with some companionship and activities. I live alone in my 60s - so much younger than your mum. It is incredibly difficult to motivate yourself to do anything when all family and work structures have gone, and easy to slip into wondering what the purpose of life is. Fortunately I am still well enough to recognise this and make myself do something about it. I can imagine that might not be the case in 20+ years. So my prescription would be company even if you have to pay for it (it would in any case be much cheaper than a care home) and having someone to keep an eye on your mum would help you too.

 

[Muttimuggle]

Hi,
For those of you who are at or have already past the stage of putting a loved one into a care home, how did you decide it was the right time? Apart from obvious things like leaving the gas on, wandering/getting lost etc, what were your reasons for deciding the time was right?
My mum still lives on her own and isn't doing anything that particularly makes her unsafe, but she worries and mothers a lot and we generally can't get her interested in doing anything. She told a relative last week "I just can't be bothered to do anything any more". That makes me feel really sad for her because physically, she is fairly healthy. She has always been very opposed to going into a home and she still wouldn't do so voluntarily, even though I do think she would benefit mentally from the constant presence of other people and from activities. Unfortunately, we all work full time so can't be with her all the time, although one of us goes to see her pretty much every day. She phones me a lot, and worries about me/us even more e.g. if it's raining/cold/dark.
I just don't know whether by thinking about a care home, I'm thinking more about making my/our life easier (which makes me feel guilty) or more about making life better/more enjoyable for mum.....

Hello, again. I am again at that stage of wondering what will be the best thing to do for my mother's future safety, happiness and to make things also easier for those involved in her care. Last time i replied to your post my mother had had a series of falls and a short hospital stay. She is 90. After being immobilised outdoors for a while she got going on little walks again with her rollator , some days. Care was twice daily. I was calling more often and there aren't many others in our family able or prepared to help with that. I often forget to mention also that I suffer chronic pain which affects mainly one leg but makes standing tasks especially difficult.

Since then, Mum fell again, broke the neck of her femur went to hospital. She is still there because a few days before she was due to leave and go for a rehab stay of up to 6 weeks she caught covid on the ward, albeit asymptomatically. Since then she has been detained for 10 days until the infection will be deemed clear(?)

In some of that post infection hospital time she was placed in an isolation room but she is back on a ward with 3 other asymptomatic people at present. This is my observation: - My mother was much worse in terms of confusion and mood when she was in that isolation room, even though the door was left open. As soon as she was moved back into a ward her spirits and cognition seemed so much better. My theory is this, about my mother - she has always insisted she is better in her own home but would never admit loneliness and I believe that this staying alone has allowed her to not expose the confusion she is experiencing to the world. I believe that this aloneness has long been her worst enemy. She is basically a sociable person but has always been proud to present herself in a good light. That ability to do so has been slipping and staying alone with less human stimulation whilst living alone has been aiding the dementia to progress faster(not to mention the Pandemic's role in all of this!).

In my mother's case, the enforced time of lessened mobility because of covid and with hospital understaffing and insufficient physio(if any?) to get moving after her leg was pinned will result in reduced mobility for her future. This may be the time, well after the rehab that is , for a care home.

I obviously have to wait for an eventual Social services assessment but my mind wavers, depending upon my Full PPE brief visit/ phone call experience with her, that is how her cognition is that day. She has had such better spirits of late because the 3 others on her ward are younger than her and do not appear to have dementia. I know she would hate to be in a nursing home where people have advanced dementia- even though that may be where she is headed herself....and I sometimes wonder whether or not a residential care home(as opposed to a nursing home) which will accept some dementia along with her reduced mobility might accept her or if this would be more preferable as a starting point. And I don't even know where I should start looking or if I should be looking yet.

Sorry, I maybe should have posted this in my own separate post...as TracyD68, you have maybe moved on or solved your initial dilemma around this. I hope so, for you anyway.

 

[My Mum's Daughter]

This may help @Crownlyn

Mum was admitted to hospital in a state of complete confusion and I was asked to stay with her overnight as the staff were afraid she'd wander.

This was my lightbulb moment; it was the hospital confirming that she needed 24 hour care. I did the only thing possible and told the doctors that I could no longer meet Mum's needs. She went from the hospital to a care home.

 

[canary]

I think your observation that your mums confusion when she was in isolation which improved when she was with others, and your conclusion that she was hiding the worst of her confusion when she was alone, is spot on.

Many people with dementia develop a fear of being on their own, but when they are with someone else they forget, so you never find out what it is like unless you can observe them when they are on their own.

The falls, the fracture, the anaesthetic and covid will have taken their toll on her cognition and taken with her decline in mobility, I really do think it is time for a car home.

If you choose a residential home that "will accept dementia" this wording usually means that they do not have much dementia training and are very unlikely to be able to deal with the more advanced symptoms of dementia. This will almost certainly mean that here will come a stage when the home cannot meet her needs and they will ask you to move her.

If you want a home that will be able to look after her right up to the end, then you have to accept that there will be residents there at all stages of dementia - including very advanced stage.

When you look at care/nursing homes be brutally honest about what she is like. Ask them how they would deal with her behaviour (woolly answers probably mean that they have little experience) and ask what sort of behaviour they would not tolerate. this will give you an idea of when you might have to move her. The last thing you want is to move her to a home and get her settled, only for the home to turn round a couple of months later and give you 28 days notice, entailing you having to go through the whole process again and another unsettling move for your mum.

 

[Muttimuggle]

I think your observation that your mums confusion when she was in isolation which improved when she was with others, and your conclusion that she was hiding the worst of her confusion when she was alone, is spot on.

Many people with dementia develop a fear of being on their own, but when they are with someone else they forget, so you never find out what it is like unless you can observe them when they are on their own.

The falls, the fracture, the anaesthetic and covid will have taken their toll on her cognition and taken with her decline in mobility, I really do think it is time for a car home.

If you choose a residential home that "will accept dementia" this wording usually means that they do not have much dementia training and are very unlikely to be able to deal with the more advanced symptoms of dementia. This will almost certainly mean that here will come a stage when the home cannot meet her needs and they will ask you to move her.

If you want a home that will be able to look after her right up to the end, then you have to accept that there will be residents there at all stages of dementia - including very advanced stage.

When you look at care/nursing homes be brutally honest about what she is like. Ask them how they would deal with her behaviour (woolly answers probably mean that they have little experience) and ask what sort of behaviour they would not tolerate. this will give you an idea of when you might have to move her. The last thing you want is to move her to a home and get her settled, only for the home to turn round a couple of months later and give you 28 days notice, entailing you having to go through the whole process again and another unsettling move for your mum.

Thank you Canary. I value the wisdom of your experience. And I know what you mean about the residential care home which would deal with dementia being potentially only a short term thing....What I am thinking about is both her acceptance of the intervention which gets made and that of my critical Invisible - who has visited her 3 times over the 18 days she has so far been in, none since her Covid infection and, despite the fact that I adjusted the phone I bought her by putting a raised bright spot on the answer button, he seems to have given up on phoning her. I am not sure where he is. She may be reporting it wrongly, of course, but I doubt this. She keeps on making excuses for him like "He's got too many houses to look after(X3) or "He may be away". without really realising that a mobile phone call can be made from anywhere. Anyway - if my interventions about what happens next don't please him then he might do a good job at persuading her out of it - I am so tired of the struggle, however, that I think my answer might be that he has do do the caring instead of me....but not sure how that would go down- and in the end I don't want my mother to suffer. All said, it is becoming too difficult for me to deal with and the responsibility for her safety is a burden I don't want to bear any more. xx

 

[canary]

There is no right or wrong answer to whether you go for a "place for life", or somewhere that will entail a move. I just wanted you to be aware of the swings and roundabouts aspect of it. What you dont want, though, is too quick a re-move when she has just got settled. Thats why its good to ask what behaviour they wouldnt tolerate, so if you knew this was beginning to start, or was on the horizon, look else where.

I would also like to point out that if your mum does not have capacity, it is much harder to remove her from a care home. If she decides that she wants to go home then the home will apply for a DoLS and also your brother would have to show Social Services that where she was being moved to will meet her needs and if you are not willing to co-operate, that wont happen.

 

[Muttimuggle]

There is no right or wrong answer to whether you go for a "place for life", or somewhere that will entail a move. I just wanted you to be aware of the swings and roundabouts aspect of it. What you dont want, though, is too quick a re-move when she has just got settled. Thats why its good to ask what behaviour they wouldnt tolerate, so if you knew this was beginning to start, or was on the horizon, look else where.

I would also like to point out that if your mum does not have capacity, it is much harder to remove her from a care home. If she decides that she wants to go home then the home will apply for a DoLS and also your brother would have to show Social Services that where she was being moved to will meet her needs and if you are not willing to co-operate, that wont happen.

Thank you. That is. valuable advice. I am making a note for my research and viewings which haven't begun properly yet. Thanks again.