Living well with dementia - NOT

[sapphire turner]

Please don't feel guilty - you have to do what you have to do to survive. My OH was physically violent - eventually he was prescribed Risperidone and for us it was transformative. He became calmer, but also more lucid, as if the fog of anger had lifted and allowed him to think a bit more clearly.
He is now in the process of going into long term care - I reached a point where I could no longer cope with the 24 hour nature of the disease, I was physically and mentally broken. I do not feel guilty, I have given my husband everything I could, but there came a point when I could no longer give him what he needed.
Only you can make the final decision about long term care, but you deserve to consider your own needs too. There is so much propaganda about caring for someone with dementia, 'Til death us do part' and 'Living well with Dementia' as the author of this article points out. I believe it is designed to guilt us into believing we have no right to practical help, we married them and it's our job. As carers we have rights too, and there comes a time when we cannot provide what the PWD needs. It sounds like you are reaching breaking point and this might be the time for permanent care. It is only now that my husband is in care that I can reflect on the terrible toll caring for him has taken on me. Being shouted at daily, threatened, pushed and shoved, and then moving to the point where my husband needs help with every aspect of daily living, pacing through the night, sleeping all day, demanding food at 10 o'clock at night, so much stress and anxiety. Please do consider your own life too, this cruel disease destroys so much.

Thanks Jax, it is all so hard isn’t it? I feel like I am coming to the end of my ability to cope but the people around me just keep saying how well I am doing 🙈🙈🙈
It means a lot to me to have your understanding and support ❤️❤️❤️

 

[My Mum's Daughter]

Thanks Jax, it is all so hard isn’t it? I feel like I am coming to the end of my ability to cope but the people around me just keep saying how well I am doing 🙈🙈🙈
It means a lot to me to have your understanding and support ❤️❤️❤️

I faced a huge amount of pressure from the "well meaning".
Why didn't I move in with Mum, they'd do this if it was there Mother. (We'd pre-agreed that this wasn't an option).
"I know all about dementia, husband's auntie had it". Yes right, you did a twice a year visit which made you an expert.
"Don't know why you need that blue badge when she walks so well." Absolutely, she has no problem with mobility but unless I park carefully, she'll be out of the car and walk straight into the traffic.
"But she looks so well". Yes she does because her body is fit as a fiddle but you can't see her brain!
"You're doing soooo well", Really, really really??? She's now been in care for 2 YEARS and I'm still picking up the bits of my life.

 

[sapphire turner]

I faced a huge amount of pressure from the "well meaning".
Why didn't I move in with Mum, they'd do this if it was there Mother. (We'd pre-agreed that this wasn't an option).
"I know all about dementia, husband's auntie had it". Yes right, you did a twice a year visit which made you an expert.
"Don't know why you need that blue badge when she walks so well." Absolutely, she has no problem with mobility but unless I park carefully, she'll be out of the car and walk straight into the traffic.
"But she looks so well". Yes she does because her body is fit as a fiddle but you can't see her brain!
"You're doing soooo well", Really, really really??? She's now been in care for 2 YEARS and I'm still picking up the bits of my life.

Yes I swear I will never say “you are doing soooo well” to anyone about anything ever 😹😹😹 just a bit patronising eh 🙈🙈🙈

 

[Rishile]

I had a conversation a while ago with an ex-friend who's neighbour had dementia. She said the woman's daughter should move in with her as she wasn't married. The daughter had never got on with her mother (I don't know the details), lived about 200 miles away, had a high-flying career. She visited her mother once per month (not enough according to ex-friend) and was trying to find a Care Home. The ex-friend felt the daughter wasn't doing enough and was very angry about it. There is no way I would expect someone to give up their home, move 200 miles, give up their job and life to look after a mother that they have never got on with. I can imagine the endless phone calls this daughter was making to try to arrange something plus all the other admin things that needed doing to achieve it.

 

[maggie6445]

I had a conversation a while ago with an ex-friend who's neighbour had dementia. She said the woman's daughter should move in with her as she wasn't married. The daughter had never got on with her mother (I don't know the details), lived about 200 miles away, had a high-flying career. She visited her mother once per month (not enough according to ex-friend) and was trying to find a Care Home. The ex-friend felt the daughter wasn't doing enough and was very angry about it. There is no way I would expect someone to give up their home, move 200 miles, give up their job and life to look after a mother that they have never got on with. I can imagine the endless phone calls this daughter was making to try to arrange something plus all the other admin things that needed doing to achieve it.

I agree @Rishile, I wouldn't expect anyone to do caring for anyone, however close their bond may be. It's a difficult , lonely , thankless job and should only be done by personal choice. No one should be made to feel bad if they chose not to. Dementia ,in particular, destroys families and relationships if you let it . Don't let it xx

 

[Kevinl]

I have children not carers for love not for care and I post on here as a carer, should I ever get dementia in whatever form I don't expect them to be here for me.
OK when they were children I was there for them and my wife too, but that was our gift, not a loan to be repaid in the future. K

 

[sapphire turner]

I have children not carers for love not for care and I post on here as a carer, should I ever get dementia in whatever form I don't expect them to be here for me.
OK when they were children I was there for them and my wife too, but that was our gift, not a loan to be repaid in the future. K

I agree ❤️

 

[maggie6445]

I have children not carers for love not for care and I post on here as a carer, should I ever get dementia in whatever form I don't expect them to be here for me.
OK when they were children I was there for them and my wife too, but that was our gift, not a loan to be repaid in the future. K

👍

 

[SAP]

I had a conversation a while ago with an ex-friend who's neighbour had dementia. She said the woman's daughter should move in with her as she wasn't married. The daughter had never got on with her mother (I don't know the details), lived about 200 miles away, had a high-flying career. She visited her mother once per month (not enough according to ex-friend) and was trying to find a Care Home. The ex-friend felt the daughter wasn't doing enough and was very angry about it. There is no way I would expect someone to give up their home, move 200 miles, give up their job and life to look after a mother that they have never got on with. I can imagine the endless phone calls this daughter was making to try to arrange something plus all the other admin things that needed doing to achieve it.

This was my exact situation ( apart from the high flying career, just a job to pay the bills) You have to develop a very hard skin when you are a long distance carer, even medical practitioners can be extremely short sighted in this situation.

 

[JaxG]

I have children not carers for love not for care and I post on here as a carer, should I ever get dementia in whatever form I don't expect them to be here for me.
OK when they were children I was there for them and my wife too, but that was our gift, not a loan to be repaid in the future. K

How beautifully you have explained this, I agree. My brother in law mumbles that my children should do more, the man who makes a lot of noise about how concerned he is, is retired but has seen his brother only 4 times in the last 3 years. My son lives in Canada, my daughters have young children and work full time. Their lives are tough enough, and I would NEVER want them to have to care for me if I became ill, especially with dementia. Being a carer for my husband with dementia destroyed so much of my life and took me to breaking point, I know that he could not have done for me what I did for him and would rather have been in a home. People I meet now comment that I look different, I'm calmer, I can think straight again. You are right, our children owe us nothing, but if you care for them and love them, treat them with the respect they deserve they will want to be in your life. It has been enough that they are at the end of the phone if I need them.

 

[JaxG]

Thanks Jax, it is all so hard isn’t it? I feel like I am coming to the end of my ability to cope but the people around me just keep saying how well I am doing 🙈🙈🙈
It means a lot to me to have your understanding and support ❤️❤️❤️

Nobody knows how hard it is to care for someone with dementia. I feel really strongly that you have a right to a life too. It sounds like your husband is reaching the point where he needs more care than you can give him, and that you are at breaking point. You have done an amazing job, caring for him and loving him in spite of some very challenging behaviours. But you are one person - care homes have lots of staff, night shift and day shift. The staff get to go home at the end of their shift - you are there 24 hours a day so it's not surprising you are feeling broken.

 

[JaxG]

I had a conversation a while ago with an ex-friend who's neighbour had dementia. She said the woman's daughter should move in with her as she wasn't married. The daughter had never got on with her mother (I don't know the details), lived about 200 miles away, had a high-flying career. She visited her mother once per month (not enough according to ex-friend) and was trying to find a Care Home. The ex-friend felt the daughter wasn't doing enough and was very angry about it. There is no way I would expect someone to give up their home, move 200 miles, give up their job and life to look after a mother that they have never got on with. I can imagine the endless phone calls this daughter was making to try to arrange something plus all the other admin things that needed doing to achieve it.

This drives me mad. These people have no idea what it means to care for someone with dementia and would never want my children to give up their lives to care for me.

 

[Ioan]

This drives me mad. These people have no idea what it means to care for someone with dementia and would never want my children to give up their lives to care for me.

I agree for me to make changes to look after my wife is one thing but as parents we would like our children to live their lives as best as they can and not look after us