Dementia moving on a step - what to do next?

[Raindancer11]

Hi - I would be grateful for advice on a number of issues here:
Firstly, my mother has been suffering from alzheimer's for a while now. She lives alone but has a carer attending three times a day, who helps out a lot by doing her shopping as well as cooking her meals. My husband and I do not live locally and work full time. My mother has recently refused to continue attending her day centre ( originally twice a week, reduced down to once a week) and became very distressed when feeling that she was being forced to go. As a result she is a bored and lonely - but flatly refuses to go back to the day centre. The staff there were extremely fond of her and were equally upset that she didn't want to go back. Despite some digging - I can find nothing negative that would explain it. Last weekend I had a call to say that she had gone missing and that the carer could not find her. This was the first time that this has ever happened. Luckily, she was found before the police had a chance to search for her. I now have an appointment with with social services to re assess her and to assess what safe guarding measures can be installed in the house. My worry is that her symptoms are worsening as she becomes more socially isolated, but she refuses to attend any groups or consider moving into a home where she would have company. I am at a loss at what to do next. I obviously want her to be safe and happy - but there is no possibility of her moving in with us as we do not have the room, and cannot give up work to care for her ( My husband also has cancer, and we have a daughter with autism - which is more than enough for my shoulders to bear right now). I do not know what to do for the best. I am beginning to feel that a care home would give her more stimulation, as she is a sociable person. By nature she has always been controlling and manipulative and our relationship has never been good- but I still want to do the best by her. I am consumed by guilt but I know in my heart that I can do no more without my own mental health suffering. I would be so grateful for any advice on this, as I know there is a wealth of experience on this forum.

The second thing is that I also work for a vet - and I can see the need for a greater awareness and care towards some pet owners, who are clearly devoted to their pets, but also are showing signs of dementia. I am trying to put together an awareness package to assist them and involve carers in caring for pets as well as feeling safe within our particular environment. I feel that I want to bring my own experience into play here but I would be so interested to have any input that you are willing to give to make it better. My mother is devoted to her own cat who has such a huge effect on her wellbeing and I would like to be able to help other sufferers in that respect. Any suggestions or experiences will be appreciated. I genuinely want to try and make a difference and make it a less frightening and bewildering place. I would be so grateful for any helpful suggestions for both problems I have raised.

 

[karaokePete]

I haven't yet had to face up to this decision but I'm sure others will give the benefit of their experience over the next day or so.

In the hope that it's of some benefit to you I include below a link to the Society Factsheet about the issue. Just click the 2nd line to read and/or print the Factsheet
Care homes - when is the right time and who decides? (476)
PDF printable version

 

[Sarasa]

Hi @Raindancer11, I moved my mother to a care home nearly a year ago. I'm retired but I lived an hour and a half away and don't have a car so couldn't get over to see mum in a crisis quickly , and crises were becoming more frequent. Mum refused carers though she was muddling her medicines and needed help cooking, shopping and cleaning. The thing that made me decide on the move was that she was going down the local pub drinking with random men and therefore potentially putting herself in danger.
As mum was self-funding I visited three local care homes and chose the one that I thought most matched the sort of things that mum likes. I didn't tell her what I was doing, something that was maybe a bit rash, as if she had been assessed as having capacity she could have insisted on leaving. As it was she was deemed to have lost capacity and she has been there ever since. If your mum is also self-funding I suggest you go and have a look at some places to get your eye in, and maybe put her name down on a waiting list. If not you'll be dependent on what Social Services suggest. I'm sure someone with experience of that will be along shortly.

As for your second query, again I have no experience, but I do know some homes allow you to take pets. I don't think mum's home does, but visitors often bring their dogs in and they have visits from various animals very frequently.

I don't feel guilty about moving mum, just very sad that her dementia caused her to need to move.

 

[canary]

The general perception is that to move someone to a care home indicates failure, which is why we all feel so guilty, but actually it can be a success. My mum moved to a care home and she thrived there. She made friends, joined in the activities and was happy and well cared for. It was the best decision I made for her, although it didnt feel like that at the time!

@Sarasa has given good advice. When you go and look at care homes, try and look beyond the decor and bells and whistles (would she really need a cinema, spa or pub?) and see what the care is like - how do the carers relate to the residents? Are there times when public areas are left unsupervised? How often do they check on residents who are in their rooms? How do they deal with common dementia behaviour like wandering, resistance to personal care and incontinence?

If you put her name down on a waiting list, you do not have to take the vacancy when it comes up, she could remain on the waiting list.

 

[Sirena]

I agree with @Sarasa and @canary - a care home really can be the best option, it isn't an admission of failure. And honestly, you don't have to give reasons for not taking your mother into your own home.

My mother has been in a CH for two years now. She would never have agreed to go, mostly because PWDs (people with dementia) do not like change, they want to stay with the familiar. Although even the familiar becomes increasingly alien - by the end, my mother couldn't identify which room was which in her flat and had to have post it notes on the doors.

She was in a similar position to your mother - she had daily carers (self funded) who did anything she needed, including pet care. They made sure the cat was fed, and accompanied my mother to the vet if necessary.

And that was the other reason my mother would not have said yes to a CH - she was obsessed with the cat, and would not have agreed to leave him. But her condition progressed to the point when she could not be left unsupervised - and she also became anxious and lonely when alone. So I just arranged the CH move, and rehomed her cat via a local cat charity. If I had tried to negotiate with my mother about this, she would have been very distressed.

As you're interested in the vet/pet aspect, I'll just mention that the cat had to go to the vet for a health check prior to being rehomed by the charity. I spoke direct to the vet practice and explained the situation, that my mother had dementia, I was POA and would be paying them. I asked them to ring me to tell me the results of the health check - which they did, they were very helpful. It can be difficult for relatives dealing with pets, if they aren't going to be taking the pet in themselves (the cat was probably the aspect I was most worried about!)

My mother's CH is 'homely'. It does not have any bells and whistles - just great care (and no smell of wee! ) She loves it there, there is always company and someone to help her. And she entirely forgot the cat within about two months and moved her loyalties to a stuffed toy dog.