mother doesn't seem to know her name

[smailes]

Hello friends. Not gonna go into my whole background but my mother has alzheimer's, was diagnosed earlier this year. We've never had a good relationship but I am doing the very least for her. I also live over 300 miles away so only see her once a month if that.
She has a social but has refused carers. She is on medication but either refuses to take them or takes them all at once.
The advice I'm after is that it is come to my attention that she is forgetting what her name is and is confused as to where she is. I speak to her everyday and it is becoming more apparent how confused she is becoming. If she leaves the house she appears to make it back home.
I've suggested to her social worker that she maybe should be going into extra care housing. Is there anyone in the same or similar situation or been through this stage the process.
I know she will end up in a Care home without doubt but if she's refusing care at what point does she require extra care. She is definitely losing capacity but hasn't lost it completely.
I'm kind of in the middle really. Not sure where to go from here now.
Any advice would be much appreciated. Thank you
Roz

 

[CareGiver-1]

We were in the same situation -- Lived 260 miles from my MIL. She could no longer drive; could no longer get her groceries, or go to the doctor; had no idea where she was. If she walked out of her apartment and could no longer see the door she was totally lost. Fortunately neighbors would get her back to her apartment when they found her. She cannot walk well so she never got very far. Her son and I are her only family members. First we moved her to our small town and put her up in her own apartment. To get her there we straightforwardly told her she had no choice in the matter -- there was no one else to care for her. As her dementia became more advanced she could no longer cook (caused 2 fires in her apartment--management told us they were considering not renewing her lease because she was a danger to other tenants), was falling almost daily, and she refused go to a nursing home. We told her she had to move in with us, and again, that she had not choice in the matter. She also has no money left to live on her own. Laying down the law like that was the only way we could get her to a safe environment. . She does not know where she is, or who we are most of the time.The 3 of us are together and no one is happy

 

[smailes]

We were in the same situation -- Lived 260 miles from my MIL. She could no longer drive; could no longer get her groceries, or go to the doctor; had no idea where she was. If she walked out of her apartment and could no longer see the door she was totally lost. Fortunately neighbors would get her back to her apartment when they found her. She cannot walk well so she never got very far. Her son and I are her only family members. First we moved her to our small town and put her up in her own apartment. To get her there we straightforwardly told her she had no choice in the matter -- there was no one else to care for her. As her dementia became more advanced she could no longer cook (caused 2 fires in her apartment--management told us they were considering not renewing her lease because she was a danger to other tenants), was falling almost daily, and she refused go to a nursing home. We told her she had to move in with us, and again, that she had not choice in the matter. She also has no money left to live on her own. Laying down the law like that was the only way we could get her to a safe environment. . She does not know where she is, or who we are most of the time.The 3 of us are together and no one is happy

Difficult isn't it. No chance she can come and stay with us. And transferring her will only disorient her more anyway.
You sound like at least you have some sort of relationship but I don't. Which comes from both sides.
Thank you for the reply though and hopefully you and your husband will find happiness soon. I think I have to accept the fact that we are going to be stuck in limbo for a while and ill have to ride this bit out until there really isn't anything but for her to go into care.
Thanx again though.
Roz

 

[Oxy]

I think the gem you can take from last poster is that she should not have too much input where it is not rational. If she doesn't know her name then she is quite advanced and to move into a flat essentially may not be best move. I admittedly don't know much about extra care.
In your position I think residential may be best for her safety and by going in now ,may give her a possible chance to strike a friendship with one of the others there.
I would decide on the area, nearer to you best for convenience and start looking and going on the waiting list. Meanwhile care in the home if she is safe to leave. I say this because clearly you don't want her within the 4 walls but could be at hand to sort things out if needed, if closer. She is obviously still mobile so a home that goes out with them if wanted and can contain when needed is best.
Good luck with your decision whatever it finally is.but do bear in mind that her safety is paramount and whilst she still finds her way home-there is always a first time and that could put her at risk.

 

[Isabella]

I don't know much about how well extra care housing works in practice, but I find it difficult to believe that it would work for someone with dementia. If the person is too confused to live in an environment they were very familiar with, then how could they cope in a new environment? Personally, I would think in most cases that if the time has come to move then residential care makes the most sense. That is what I felt for my mum anyway. She would never have coped in extra care because she had lost the ability to make sense of anything around her, and if we had tried I am sure there would have been the need to move her again soon after, which could only have been more confusing and frightening for her. Of course, you know your family member's limits best though so it might be different for you, but my view has always been that residential care is the only option once things reach that point.

 

[smailes]

Thanx guys, yeah I think you are absolutely right. I've been reading about extra care housing and essentially it's a one bed flat where she would be expected to live independently. This is precisely what she is having difficulties with.
It's something I've thought about for a while, but it was the social worker that said that they would prefer to keep her in her own home with carers. She's refused carers and now only has me to ring her to remind her to take her tablets, unfortunately I don't know if she is taking them. She says she is but I've no evidence of this.
As for looking near where I live I am not going to be staying where I am and I am planning on moving within the next year. I think and have always thought that keeping her where she is the best option. Also she will not be self funding so I'm not sure how much choice I would have as to where she would live.
Thank you all so much for your help and advice. As I said it's been something that I expected was going to be the next move but I suppose I was trying to give her a bit longer.
When the doctor gave her her official diagnosis he said she was in the moderate stage of alzheimer's but surely if she's forgotten her name and needs reminding that's not moderate. She's not due a memory test until early next year. I expect there will be some significant changes at the next one.
Do I mention the idea of residential care to her social worker or to her gp?
Thank you for listening
Roz

 

[Pickles53]

If she would not be self-funding the first hurdle would be a needs assessment by SS to see if your mum meets their criteria for a residential placement. I was told earlier this year by SS that residential care was unlikely to be approved unless carer visits 4 times a day were demonstrably insufficient to meet mum's needs (and she had nobody living locally either) so that would have to be tried first. If carers are being refused I don't know how that would work.

There's also the issue of whether your mum has capacity to decide where she should live, if there us no H&W LPA in place. If she is deemed to gave capacity, and won't move, as I understand it that decision has to be respected, however unwise it is.

 

[smailes]

If she would not be self-funding the first hurdle would be a needs assessment by SS to see if your mum meets their criteria for a residential placement. I was told earlier this year by SS that residential care was unlikely to be approved unless carer visits 4 times a day were demonstrably insufficient to meet mum's needs (and she had nobody living locally either) so that would have to be tried first. If carers are being refused I don't know how that would work.

There's also the issue of whether your mum has capacity to decide where she should live, if there us no H&W LPA in place. If she is deemed to gave capacity, and won't move, as I understand it that decision has to be respected, however unwise it is.

Yes your right no lasting power of attorney in place. I didn't want to be. And no carers as yet let alone 4 a day. I expect it will take a lot more them to deem her eligible especially as she has the capacity to refuse even though she doesn't realise that refusing is potentially dangerous.
A long road ahead while we wait for loss of capacity I feel.
Thank you for your support pickles 53
Roz

 

[Pickles53]

Yes your right no lasting power of attorney in place. I didn't want to be. And no carers as yet let alone 4 a day. I expect it will take a lot more them to deem her eligible especially as she has the capacity to refuse even though she doesn't realise that refusing is potentially dangerous.
A long road ahead while we wait for loss of capacity I feel.
Thank you for your support pickles 53
Roz

It's so difficult when you can see the crisis coming but apparently nothing can be done till it hits. In one way I was fortunate that mum was so unhappy at home (and said so to her CPN); he was satisfied she had capacity so we were able to go ahead with move plans when she fell and was unable to regain any mobility. After she moved of course she was just as unhappy and kept saying she hated it there. I don't how she feels now as she says so little and sleeps so much, but she seems a little calmer and less anxious.

 

[Oxy]

How about recording phone conversations to show confusion. Remember to point out to powers that be about medication probs that could have dire consequences.