What's best for mum?

[Sara M]

Advice please. My mother was diagnosed with Early onset Alz 3 years ago. She is now 63. She has a 15 year history of depression with 2 episodes requiring ECT. We are lucky in some respects that we are able to work with a great agency who provide carers that stay with mum 24/7 in her home. My father died a year ago.
At the moment, mum cannot be left on her own and although fit and active, she is very confused much of the time (stills thinks dad will come home, wants to 'go home' as in to the home she was born in, wants to 'see mummy' (who died 10 years ago). Unable to read, write (due to lack of concentration), or take much pleasure from very much. Bowel incontinence alos becoming a problem. She cries incessantly but doesn't know why she is crying and is obviously depressed (on medication)
The problem is that there is only me and my sister who visit her - neither of us are local, we both have to work and both have very small children. So called friends disappeared and essentially if we don't see her, mum sees very few people. we were aiming to get 3 or 4 regular carers to come back on a rota to care for mum, but they find it very hard as mum has no interests,is very intense on a 1:1 basis all the time and they have to 'fill' a day, so we are getting different carers (who are very kind) but mum gets very distressed on change over days.
We have looked into day centres for younger poeple but mum got so distressed. Going out Mum gets very agitated when going anywhere then wants to come back as soon as they have left.

My sister always thought that keeping mum in her own home was the priority, but we are in a huge dilemma about whether infact she would be better to go into a good home for younger people with Alz (if we can find one) as there would be more people around (mum lives in a pretty, but very isolated village) as mum is socially very isolated and lonely. Hopefull there would be more consistency in people caring for her as well. My sister and I just do not have the capacity to organise activities for the week, and having new carers all the time is making mum so unsettled every 10 days to 2 weeks.

Has anyone else been been in this dilemma? What did you do?
Many thanks.

 

[Brucie]

would be better to go into a good home for younger people with Alz (if we can find one)

the problem is that, whether with younger people, or with older ones, the dementia advances and fairly soon it is difficult to tell the difference.

In my wife's home - which has specialised with a higher proportion of early onset residents than most homes - my wife sits alongside someone her own age [68 now, but Jan was 61 ie early onset when she moved there], but also with a 97 year old, 80 year olds and 70 year olds.

Truth is, it is difficult to see any difference between them at their respective stages. The only one able to talk [albeit always with insults] is the 97 year old.

This is the challenge - what sort of home to look for?

My sister always thought that keeping mum in her own home was the priority

my view has always been that the priority is to provide the best care for my wife - wherever that needs to happen. A long-standing family home can quickly not seem like home to a person with dementia.

I think it depends on the progression of the disease and the stage a person is at, and that changes almost daily in some cases.

Sorry, not much help, just my thoughts.

 

[Margarita]

my view has always been that the priority is to provide the best care for my wife - wherever that needs to happen. A long-standing family home can quickly not seem like home to a person with dementia

A long-standing family home can quickly not seem like home to a person with dementia

That is very true from my experience with my mother, it’s the care and the stability of the care a person with a dementia receives, as you have notice with your mother like I have in when they is a change over of carer coming in to care for them, the person with a dementia get more agitated and confused.
A person with dementia just can’t take the stress of change.

we were aiming to get 3 or 4 regular carers to come back on a rota to care for mum, but they find it very hard as mum has no interests,is very intense on a 1:1 basis all the time and they have to 'fill' a day, so we are getting different carers (who are very kind) but mum gets very distressed on change over days.
We have looked into day centres for younger poeple but mum got so distressed. Going out Mum gets very agitated when going anywhere then wants to come back as soon as they have left.

but they find it very hard as mum has no interests,is very intense on a 1:1 basis all the time and they have to 'fill' a day,

Same with me , I was also finding that with my mother . My mother live with me full time .


It came to a stage for me, that if mum would not go to day centre I would of had to consider mum going into full time care home, which at the time I did not want to happen. My mother did not want to go to day centre let alone a care home, but my mother had no interest because all her motivation had gone. It was not worth bringing in a rota of carer coming into our home to care for mum for a few hours, to give me a break. Because it would have only confused, upset, frustrated my mother more, they could not motivate my mother to interact with them. My mother would just sleep, or just sit there like she does with me.

I have had sitter for my mother in the past; it does not work because of the changeover. When they have gone I am home alone with mum, my mother is very confused frustrated trying to understand why the person who cared for her yesterday was not there today. Even thought my mother cannot recognize faces gets very confused, mum still know when it was someone different caring for her , As my mother has AZ/ VD, so can still retained part of a conversation that she may of had with a carer the day before, if the different carer does not know what she on about, because mum asking about a conversation she may of had with the different carer the day before . She picks up that it’s a different carer, gets really upset frustrated, because the new carer does not have a clue what mum on about.

( I do have 2 carer morning evening to wash change mum, if one on holiday, ill , so another carer tune up, it set of the confusion in mum. I have to tell my mother its a different carer on the day )


At day centre mum join in with everything as she tell me now “she does not want to be left behind”
At day centre like in a good care home with good activities going on somehow, they brought my mother outside of herself, mum would join in. My - be because the day centre that mum first went to was the AZ day centre, so are trained have the skills to get my mother to interact with activities.

About Mix age, care home younger people with dementia mixing with older people in a Care home, has got a bit of a stigma, but a good care home with Mix age of dementia as I have seen in many respite care home that my mother been to, do different activities for the ability of the stage the person is in.

You have to find, visit quit few care home, that have Mix age, see for yourself how do they stimulate younger person with dementia that is not in an advice stage .

It’s a bit like a catch 22 , because even thought your mother is younger , your mother could be in an advice stage of someone of an older age with a Dementia . So really age does not matter with a person with dementia,as it could all be down to what stage they are in the dementia.

Like Bruce put

I think it depends on the progression of the disease and the stage a person is at, and that changes almost daily in some cases.