Mother with dementia

[Chizz]

The lottery is a silly fantasy and a complete waste of money. My mother is the product of her own ruined childhood. All I would wish is to have a place where I could have her with me (and a carer), with garden and dogs. Keeping her at arm’s length, but basically cared for NOT in an institution.

Hi,
In my view, I don't think it realistic to hope for a "place" in which anybody is cared for that is not an institution, other than i) their own home - which costs - or ii) someone else's home - if there is someone else to care, which you have already denied - or iii) a hospital if and when required or iv) a care/nursing home - which costs - or v) a hospice - for end of life care.
You have already said your mother is highly intelligent and living at home with dementia. Does she still have the mental capacity to manage her own affairs? If so, then she can decide what, if any, help she wants to accept. If not, then either her PoA has to decide or the medics do.
Either way, as time goes on dementia only worsens.
In earlier posts you state you cannot live with your mother, but in the latest post you state you want her with you, but at arm's length.
I wish you well.

 

[AndyWS]

Hi,
In my view, I don't think it realistic to hope for a "place" in which anybody is cared for that is not an institution, other than i) their own home - which costs - or ii) someone else's home - if there is someone else to care, which you have already denied - or iii) a hospital if and when required or iv) a care/nursing home - which costs - or v) a hospice - for end of life care.
You have already said your mother is highly intelligent and living at home with dementia. Does she still have the mental capacity to manage her own affairs? If so, then she can decide what, if any, help she wants to accept. If not, then either her PoA has to decide or the medics do.
Either way, as time goes on dementia only worsens.
In earlier posts you state you cannot live with your mother, but in the latest post you state you want her with you, but at arm's length.
I wish you well.

With me in my mythical large house with large gardens etc. Not hers. I decline at this time to defer to the British standard of care home or nothing. I hope that that is not in the end necessary. No she does not have full capacity, certainly not re money management. Thus I pay for all of her groceries.

 

[Neveradullday!]

Hi @AndyWS
Can you stay parked up at the same place, every night in your car, or do you have to move around a bit?
I do know more people are adopting 'van life' but I suppose in a car it's a lot less private.

 

[AndyWS]

Hi @AndyWS
Can you stay parked up at the same place, every night in your car, or do you have to move around a bit?
I do know more people are adopting 'van life' but I suppose in a car it's a lot less private.

I park in the same place, on the South Downs. Beautiful actually. Lots of walkers, cyclists and horse riders. The privacy thing is not an issue for me. The ‘how did it come to this?’ is while I do miss my bath, my washing machine and my drier, plus my oven (I bake bread).

 

[AndyWS]

I park in the same place, on the South Downs. Beautiful actually. Lots of walkers, cyclists and horse riders. The privacy thing is not an issue for me. The ‘how did it come to this?’ is while I do miss my bath, my washing machine and my drier, plus my oven (I bake bread).

In fact I have bought a van. But for the time being, I prefer my car.

 

[canary]

I hope you did not think I was "piling in" on you. I think that you and your mum are in a very difficult situation. When I asked what your solution was I was trying to point out that with dementia there is so little support that there are very few options available. It sounds to me as though at the moment your mum is OK, although you are understandably concerned.

Sometimes you have to go with the least worse.

 

[AndyWS]

I hope you did not think I was "piling in" on you. I think that you and your mum are in a very difficult situation. When I asked what your solution was I was trying to point out that with dementia there is so little support that there are very few options available. It sounds to me as though at the moment your mum is OK, although you are understandably concerned.

Sometimes you have to go with the least worse.

Anyone can say anything they like. My mother is very far from ‘alright’ and her ‘independence’ is much thanks to her remarkable neighbours. All her food is bought by me, meanwhile, and while she can cook, mostly she eats bread with peanut butter or marmalade, plus crisps and bananas. I would have taken her to the beach yesterday evening, but she wanted to take the cat, with which she is obsessed, so I just bought her fish and chips instead, then left with her crying for me not to. But I am emotionally switched off, while knowing she will soon recover. She did (gardening with her neighbour (who WhatsApp’d me). She keeps the house and herself clean, but gets scared on her own. It’s a shame that I cannot live with her, but she is super-feisty and that could only only happen if I had an appropriate house plus the ability to afford some kind of companion for her. Fantasy, but there it is. I hope, while I write and wonder if that could conceivably get me anywhere.

 

[AndyWS]

Anyone can say anything they like. My mother is very far from ‘alright’ and her ‘independence’ is much thanks to her remarkable neighbours. All her food is bought by me, meanwhile, and while she can cook, mostly she eats bread with peanut butter or marmalade, plus crisps and bananas. I would have taken her to the beach yesterday evening, but she wanted to take the cat, with which she is obsessed, so I just bought her fish and chips instead, then left with her crying for me not to. But I am emotionally switched off, while knowing she will soon recover. She did (gardening with her neighbour (who WhatsApp’d me). She keeps the house and herself clean, but gets scared on her own. It’s a shame that I cannot live with her, but she is super-feisty and that could only only happen if I had an appropriate house plus the ability to afford some kind of companion for her. Fantasy, but there it is. I hope, while I write and wonder if that could conceivably get me anywhere.

Drives me mad when I write badly (those brackets!). So it goes. Living in my car I have learnt to cope with imperfection better. ‘Piling on’ is not an issue, though I do not take kindly to soft soap re care homes. So far as my mother is concerned, they are a vision of hell, she having spent time in a children’s home.

 

[canary]

I was not suggesting that your mum is "alright" - no-one with dementia is "alright", but it sounds to me as though your mum is at least vaguely coping with your and her neighbours help, at the moment.

I know what you mean about hoping that the person with dementia has a quick death by falling down the stairs, having a heart attack, or just not waking up one morning, before the dementia gets too bad. I wished that for my feisty mum too, but, alas, it was not to be.

 

[AndyWS]

I was not suggesting that your mum is "alright" - no-one with dementia is "alright", but it sounds to me as though your mum is at least vaguely coping with your and her neighbours help, at the moment.

I know what you mean about hoping that the person with dementia has a quick death by falling down the stairs, having a heart attack, or just not waking up one morning, before the dementia gets too bad. I wished that for my feisty mum too, but, alas, it was not to be.

Yes, she gets by. She dresses, she washes, she drinks coffee and she sits in the garden. She is supported to a greater or lesser degree, while she has ‘carers’ drop by daily, though she is mostly unimpressed with them. Strangers! What do they want? And if she falls down the stairs, to a shocking end, my brother will be home like a shot to make his claim (he hasn’t visited her for several years and presently lives 4,000 miles away). Personally, I will give all her money to charity (dogs and cats, on her behalf). I refuse to make a penny out of her and in the end will only ever be aware of what I could not do for her.

 

[canary]

in the end will only ever be aware of what I could not do for her.

Yes, we are all aware of that - carers guilt seems to be universal. With dementia nothing that you do is ever enough and there are no "good" decisions. Dementia takes and takes and if you are not careful it will chew you up and spit you out.

My brother never came to see my mum either, but couldnt wait to get his hands on his inheritance 🤬 Im afraid that it is very common and such relatives are known on here as "invisibles"

 

[AndyWS]

Yes, we are all aware of that - carers guilt seems to be universal. With dementia nothing that you do is ever enough and there are no "good" decisions. Dementia takes and takes and if you are not careful it will chew you up and spit you out.

My brother never came to see my mum either, but couldnt wait to get his hands on his inheritance 🤬 Im afraid that it is very common and such relatives are known on here as "invisibles"

I realise it is a clichéd situation, with my brother especially. I will never be in his presence again, bar possibly two funerals. Having said that, he did not make his beloved father’s send-off earlier this year. A ‘love you’ gravestone only. I despise him. As for my mother and I, we have a hateful relationship in many ways. But I am there every day at least. People say ‘respect’ for what I do. I accept no plaudits though. What I do is the very bare minimum, in my view, as ultimately I cannot be that ‘wonderful son’. Merely the provider and a presence better than no-one at all.

 

[canary]

Im not sure that Id describe it as a "cliched" situation as that usually implies something simplistic and with no depth of feeling. Having been on here for many years I have found numerous common situations, many of which seem almost exclusive to dementia and most of which cause deep feelings. It is a disease unlike almost any other in that you usually cannot discuss things with them, plan for the future or face things together.

I must go now, though. OH is calling and my day will start again
x

 

[AndyWS]

Im not sure that Id describe it as a "cliched" situation as that usually implies something simplistic and with no depth of feeling. Having been on here for many years I have found numerous common situations, many of which seem almost exclusive to dementia and most of which cause deep feelings. It is a disease unlike almost any other in that you usually cannot discuss things with them, plan for the future or face things together.

I must go now, though. OH is calling and my day will start again
x

‘Clichéd’, as in that lack of real effort by my brother especially, and family in-fighting, including him accusing me of ripping off both parents. I could (and might yet) literally kill him. Enjoy your day, if you can.

 

[Neveradullday!]

In fact I have bought a van. But for the time being, I prefer my car.

2 and a half years ago, when my mum was in hospital for 3 weeks (appalling care BTW), living in a car /small van did cross my mind - cheaper alternative to renting. Thankfully we're both doing very well.

But I remember reading a Honda Jazz would be one of the best cars to live in, apparently the back seats can be rearranged to make more space.

 

[AndyWS]

2 and a half years ago, when my mum was in hospital for 3 weeks (appalling care BTW), living in a car /small van did cross my mind - cheaper alternative to renting. Thankfully we're both doing very well.

But I remember reading a Honda Jazz would be one of the best cars to live in, apparently the back seats can be rearranged to make more space.

I guess we all cut our cloth. I ‘live in’ an Audi A3, in which the passenger seat reclines almost flat. Pretty comfortable really. I’m not complaining. Yes, I can imagine the care of your mum was awful, understaffing can be a curse. I was a nurse for a long time - and I was good. So it goes.

 

[Neveradullday!]

The Audi A3 looks a lot better than the Jazz! Just had a look on autotrader and there's a 2011 A3 (diesel) 95K miles going for under £4K - not bad, road tax is only £20 too.

 

[AndyWS]

The Audi A3 looks a lot better than the Jazz! Just had a look on autotrader and there's a 2011 A3 (diesel) 95K miles going for under £4K - not bad, road tax is only £20 too.

They are really fast cars.