Dementia care (home Vs care home)

noclaf

sparkiemalarkie said:

My mum had dementia and I looked after her in her own home with the help of carers.
I cared for mum for 15 years and she died just 2yrs ago.

Looking back I really regret doing it.

There has been a huge cost to me personally, to my children, to my marriage and to my relationship with my siblings.

At first caring for her was manageable but after several years, as she deteriorated, I could give less time to my children and husband.
My children missed out big time and this is my biggest regret.

My siblings cheered me on from the sidelines but did very little to help.....

I regret that I spent my time with mum as her carer and not as her daughter ~ My role became one of doing, organising, getting and arranging instead of enjoying our time together and just 'being'

Maybe you have a very supportive family and maybe there are plenty of you to share the difficult stuff.
I wish you well

Sorry to hear but also appreciate you sharing this as it's useful perspective for my situation.
We have a large extended family but not where we can ask others to help with care... everyone has their own challenges and hardships plus other day to day responsibilities in life so just not possible to share the load etc

I've kept my mother at home for as long as possible.in some.ways as I owe a great deal to her for having a reasonably good life now. She sacrificed a lot, imagine two parents with serious mental health issues...somehow I've come out unscathed much due to a strong family support base and my mothers determination to ensure I had a secure/stable upbringing. Not everyone is as fortunate but I have to think about my own and wife's mental health too..have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

Pennylane

noclaf said:

sparkiemalarkie said:

My mum had dementia and I looked after her in her own home with the help of carers.
I cared for mum for 15 years and she died just 2yrs ago.

Looking back I really regret doing it.

There has been a huge cost to me personally, to my children, to my marriage and to my relationship with my siblings.

At first caring for her was manageable but after several years, as she deteriorated, I could give less time to my children and husband.
My children missed out big time and this is my biggest regret.

My siblings cheered me on from the sidelines but did very little to help.....

I regret that I spent my time with mum as her carer and not as her daughter ~ My role became one of doing, organising, getting and arranging instead of enjoying our time together and just 'being'

Maybe you have a very supportive family and maybe there are plenty of you to share the difficult stuff.
I wish you well

Sorry to hear but also appreciate you sharing this as it's useful perspective for my situation.
We have a large extended family but not where we can ask others to help with care... everyone has their own challenges and hardships plus other day to day responsibilities in life so just not possible to share the load etc

I've kept my mother at home for as long as possible.in some.ways as I owe a great deal to her for having a reasonably good life now. She sacrificed a lot, imagine two parents with serious mental health issues...somehow I've come out unscathed much due to a strong family support base and my mothers determination to ensure I had a secure/stable upbringing. Not everyone is as fortunate but I have to think about my own and wife's mental health too..have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

What about arranging for a week’s respite care in a home you like the look of?  It would give your Mum a chance to see what she thinks and it would give you a break to talk things over.  My friend’s Mum is currently really enjoying a break in a rehab hospital following a fall at her house and it is a lot less lonely for her than being at home and she is enjoying the company. 

Mojisola

noclaf said:

have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

Another thought to throw into the mix - wouldn't it be better for your mother to have 24/7 residential care and a loving son and daughter-in-law able to visit often and enjoy time with her or a completely stressed and worn-out son and DIL struggling to cover her needs at home?

It sounds as if you have done a great job with the care you've provided up to now but it is important to consider your own well-being.

noclaf

Pennylane said:

noclaf said:

sparkiemalarkie said:

My mum had dementia and I looked after her in her own home with the help of carers.
I cared for mum for 15 years and she died just 2yrs ago.

Looking back I really regret doing it.

There has been a huge cost to me personally, to my children, to my marriage and to my relationship with my siblings.

At first caring for her was manageable but after several years, as she deteriorated, I could give less time to my children and husband.
My children missed out big time and this is my biggest regret.

My siblings cheered me on from the sidelines but did very little to help.....

I regret that I spent my time with mum as her carer and not as her daughter ~ My role became one of doing, organising, getting and arranging instead of enjoying our time together and just 'being'

Maybe you have a very supportive family and maybe there are plenty of you to share the difficult stuff.
I wish you well

Sorry to hear but also appreciate you sharing this as it's useful perspective for my situation.
We have a large extended family but not where we can ask others to help with care... everyone has their own challenges and hardships plus other day to day responsibilities in life so just not possible to share the load etc

I've kept my mother at home for as long as possible.in some.ways as I owe a great deal to her for having a reasonably good life now. She sacrificed a lot, imagine two parents with serious mental health issues...somehow I've come out unscathed much due to a strong family support base and my mothers determination to ensure I had a secure/stable upbringing. Not everyone is as fortunate but I have to think about my own and wife's mental health too..have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

What about arranging for a week’s respite care in a home you like the look of?  It would give your Mum a chance to see what she thinks and it would give you a break to talk things over.  My friend’s Mum is currently really enjoying a break in a rehab hospital following a fall at her house and it is a lot less lonely for her than being at home and she is enjoying the company. 

I think this is a great idea actually, let her get a sense of how it is. Understandably it's a huge life change and I would also be fearful if in the same situation so that would help to ease the uncertainty and stress. 

noclaf

Mojisola said:

noclaf said:

have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

Another thought to throw into the mix - wouldn't it be better for your mother to have 24/7 residential care and a loving son and daughter-in-law able to visit often and enjoy time with her or a completely stressed and worn-out son and DIL struggling to cover her needs at home?

It sounds as if you have done a great job with the care you've provided up to now but it is important to consider your own well-being.

Agreed.
 Btw, I tend to use the term 'nursing home' as a catch-all description but aware that residential and nursing care are different/distinct...my mother might be ok in residential care initially but assume nursing care will be needed at some point depending on how her overall health/condition progresses.

tooldle

My mum is in residential care. I choose a place with a specialist dementia unit so that she would not need to move. District nurses provide some support. In the time mum has been in the home, only a few residents have moved into nursing care and this has been due to serious and sudden changes, significant strokes etc. 
Respite care is a great idea. If possible, i’d suggest two weeks rather than one. A longer visit gives everyone that bit more time to adjust and to see how things suit.

JGB1955

My father went from 'live in carers' (which is actually 8 hours per day - they have breaks - they go off shopping - they aren't expected to be woken overnight more than a couple of times) to hospital, to a Nursing home where he received brilliant care for the last 18 months of his life.  The Nursing home was a fraction of the cost of live in carers - particularly when they were considering the need for 2 carers to cope with his needs, food for everyone, utility costs, gardener, window cleaner etc etc.  It was also a relief for me, not getting calls from the carers about 'hornets nest by the back door', 'the immersion heater isn't working again' etc etc.

elsien

noclaf said:

Mojisola said:

noclaf said:

have been grafting and struggling to care for my mother for years and need to take a step back and do what's best for everyone involved...there is a limit and we are approaching it now esp if her condition gets worse..which it will as the cognitive functions decline further.

Another thought to throw into the mix - wouldn't it be better for your mother to have 24/7 residential care and a loving son and daughter-in-law able to visit often and enjoy time with her or a completely stressed and worn-out son and DIL struggling to cover her needs at home?

It sounds as if you have done a great job with the care you've provided up to now but it is important to consider your own well-being.

Agreed.
 Btw, I tend to use the term 'nursing home' as a catch-all description but aware that residential and nursing care are different/distinct...my mother might be ok in residential care initially but assume nursing care will be needed at some point depending on how her overall health/condition progresses.

Some homes are dual registered which might be worth looking at. Otherwise if she only needs residential at this stage, she may need another move to a home that offers nursing care in the future. 

Pennylane

My Mum lived in her own home until she was 92.  She had lived alone since my Dad died about 10 years earlier. She did really well all those years and I took her shopping, to appointments, did all her correspondence, paid bills and brought her to my house every weekend to stay.  I also took her on holidays.   When she was diagnosed with dementia and her general health deteriorated she became unsafe at home.  I got carers in for her plus a cleaner but that wasn’t enough. 

After visiting 14 homes Mum went to live at a wonderful home where the staff were well trained, kind and they thought the world of Mum.  Yes, it was expensive and we had to sell Mum’s home but she got the best care possible.  Any medical issues and the GP or District Nurses visited the same day.  She gained weight with all the lovely home cooked food and I visited every other day and took her out in a wheelchair if the weather was good. She lived there happily for 3 years but I don’t think she would have managed 6 months if she was “home alone”.  

lisyloo

A couple of points (and apologies I haven’t read the entire thread).
is the extension exclusively for her? Sometimes people move/extend and then the person dies, for example some died earlier than expected in the pandemic.
Is she funding care or would the LA be expected to contribute? my experience which other have also reflected is that you won’t get LA help until her/you are on your knees. When my MIL was in hospital we took my FIL (late 80s and disabled) into the meeting with the discharge coordinator. He hobbled in on his zimmer and broke down emotionally saying he couldn’t cope. They accepted this but you won’t get tax payer help if there are other alternatives. The person has to be in danger (of falling or making unsafe decisions) without recourse to help to get LA funding. If there is anyone in the house who is not working/too elderly or disabled then they are expected to provide the care.