Bereavement of disabled parent - advice required
Discussion
In a bit of a pickle at the moment.
My dad died unexpectedly from a heart attack a week ago - he was mid 70s but generally seemed in good health so it was a huge shock. He was the carer for his wife (my mum) who is late 70s and suffers from primary progressive Multiple Sclerosis. She uses a wheelchair and can’t walk. As is usual, symptoms include much reduced mobility and grip/accuracy, difficulty standing, lack of control with arms and hands, double vision, and there’s probably a degree of depression as well. These symptoms are exacerbated by stress and tiredness so they are as bad as I’ve ever seen them at the moment. They lived together in a large bungalow with no outside assistance in the Midlands, my brother and I living in Newcastle upon Tyne and SE London respectively. We had no idea how difficult things had become for them as they hadn’t wanted to burden us bless them, and that guilt is something we will carry to the grave unfortunately.
As well as dealing with his death, the double whammy is that my mother has said she doesn’t want to live at home on her own. Over the last 10 days my brother and I have been living with her and looking after her. We engaged some carers to help with mornings and evenings, but she is up several times in the night and needs constant supervision. She can be left for a couple of hours and is usually OK to go to the loo but there needs to be somebody on hand just in case. We considered 24 hour care in the home but it is out of the question for a number of reasons (cost, security, personal isolation), so residential care is the only realistic solution. Of course we are racked with guilt for “shoving our mother in a home before our father is cold in the ground” and no doubt people will be judging us for that, but we both have families that we need to support and jobs 150+ miles away, and if the past 10 days have taught us anything is that we are woefully ill-equipped to care for our mother effectively.
What concerns me a lot at the moment is her state of mind - she’s an intelligent woman and sound of mind, but she is extremely neurotic and a complete control freak - and of course the lack of control she has over everything because of the MS means that she is constantly on at others to do the things that she wants to be able to do for herself. She has severe confidence issues and my parents have been very isolated over the last few years due to Covid anyway, so meeting new people and friends will be massive. It is sinking in for her that there is a huge amount that my dad used to do that she doesn’t know how to and ultimately won’t be able to us (she can use an ipad but she is very slow as her motor control is poor, and she’s never done anything like forwarding emails or paying for things online etc.). This combined with the massive shock and realisation that she will, ultimately, be on her own means that she is really struggling, and I am worried that when we ultimately leave her in a care home, even with daily phone calls and weekly visits, will lead her into a spiral of depression and a general downward decline.
Has anybody been in a similar situation, and what did you do? I feel we are stuck between a rock and a hard place - mum can’t stay in her home for a multitude of reasons, and she realises this and has instigated the conversation. We can’t realistically move her to a home near either of us (and she wouldn’t want that), and we can’t give up our lives to move back to the Midlands to look after her (and in any case that wouldn’t be best for her in terms of socialising etc).
At the moment we are hoping to go and see a really nice home tomorrow (brother and I visited on Tuesday) and fingers crossed she will like it too - if she can approach with an open mind. We have talked about trying it as respite care for a couple of weeks, but ultimately if she doesn’t like it I really don’t know what we can do. It’s a complete s
t sandwich.
My dad died unexpectedly from a heart attack a week ago - he was mid 70s but generally seemed in good health so it was a huge shock. He was the carer for his wife (my mum) who is late 70s and suffers from primary progressive Multiple Sclerosis. She uses a wheelchair and can’t walk. As is usual, symptoms include much reduced mobility and grip/accuracy, difficulty standing, lack of control with arms and hands, double vision, and there’s probably a degree of depression as well. These symptoms are exacerbated by stress and tiredness so they are as bad as I’ve ever seen them at the moment. They lived together in a large bungalow with no outside assistance in the Midlands, my brother and I living in Newcastle upon Tyne and SE London respectively. We had no idea how difficult things had become for them as they hadn’t wanted to burden us bless them, and that guilt is something we will carry to the grave unfortunately.
As well as dealing with his death, the double whammy is that my mother has said she doesn’t want to live at home on her own. Over the last 10 days my brother and I have been living with her and looking after her. We engaged some carers to help with mornings and evenings, but she is up several times in the night and needs constant supervision. She can be left for a couple of hours and is usually OK to go to the loo but there needs to be somebody on hand just in case. We considered 24 hour care in the home but it is out of the question for a number of reasons (cost, security, personal isolation), so residential care is the only realistic solution. Of course we are racked with guilt for “shoving our mother in a home before our father is cold in the ground” and no doubt people will be judging us for that, but we both have families that we need to support and jobs 150+ miles away, and if the past 10 days have taught us anything is that we are woefully ill-equipped to care for our mother effectively.
What concerns me a lot at the moment is her state of mind - she’s an intelligent woman and sound of mind, but she is extremely neurotic and a complete control freak - and of course the lack of control she has over everything because of the MS means that she is constantly on at others to do the things that she wants to be able to do for herself. She has severe confidence issues and my parents have been very isolated over the last few years due to Covid anyway, so meeting new people and friends will be massive. It is sinking in for her that there is a huge amount that my dad used to do that she doesn’t know how to and ultimately won’t be able to us (she can use an ipad but she is very slow as her motor control is poor, and she’s never done anything like forwarding emails or paying for things online etc.). This combined with the massive shock and realisation that she will, ultimately, be on her own means that she is really struggling, and I am worried that when we ultimately leave her in a care home, even with daily phone calls and weekly visits, will lead her into a spiral of depression and a general downward decline.
Has anybody been in a similar situation, and what did you do? I feel we are stuck between a rock and a hard place - mum can’t stay in her home for a multitude of reasons, and she realises this and has instigated the conversation. We can’t realistically move her to a home near either of us (and she wouldn’t want that), and we can’t give up our lives to move back to the Midlands to look after her (and in any case that wouldn’t be best for her in terms of socialising etc).
At the moment we are hoping to go and see a really nice home tomorrow (brother and I visited on Tuesday) and fingers crossed she will like it too - if she can approach with an open mind. We have talked about trying it as respite care for a couple of weeks, but ultimately if she doesn’t like it I really don’t know what we can do. It’s a complete s
t sandwich.Edited by NiceCupOfTea on Thursday 9th February 23:05
Very sorry to hear this, it's all ticking along fine until life pulls the rug from under everything. Is there any such care services that she could stay in her own home and gets a care visit a few times a week? I guess she needs round the clock care, if that's the case it really is a care home for your best option. Failing that one or both of you will have to become full time carers, or move house and house her in an annexe, but that's complicated for many reasons.
You're not alone, anyway, speak to your friends and other family members for advice, plus this motley crew on here always have a bended ear and occasional words of wisdom in amongst the frozen sausages.
ETA: Sorry didn't absorb the point that you've had the carers in already but it's not enough.
You're not alone, anyway, speak to your friends and other family members for advice, plus this motley crew on here always have a bended ear and occasional words of wisdom in amongst the frozen sausages.
ETA: Sorry didn't absorb the point that you've had the carers in already but it's not enough.
Edited by Speed Badger on Friday 10th February 19:45
Don’t feel guilty about a home if that’s what is decided. If it’s best for your mum and your family it’s the right choice.
My brother is disabled from birth. Requires 24 hour care. Sometimes two to one during the day. My parents really struggled when they arranged for him to move out into his own place with carers. For the reasons you’ve mentioned. However, it was the best decision for everyone. My brother is thriving, is happy and has his carers wrapped around his fingers.
My parents are happy. They have a better relationship with him as mum/dad and son rather then carer.
My brother is disabled from birth. Requires 24 hour care. Sometimes two to one during the day. My parents really struggled when they arranged for him to move out into his own place with carers. For the reasons you’ve mentioned. However, it was the best decision for everyone. My brother is thriving, is happy and has his carers wrapped around his fingers.
My parents are happy. They have a better relationship with him as mum/dad and son rather then carer.
Sorry for your loss.
You have nothing to feel guilty for. Everyone feels a responsibility to look after their parents in old age, which is what you are doing. Providing 24hr care is not practical.
Have you considered sheltered accommodation with carer support, rather than a home?
Homes are expensive and usually the powers-that-be will do everything possible to keep the person in their own home
If your mother can manage certain things, having carers in during the day to get her up, dressed, etc then emergency support available overnight may be a better solution than a full-on care home.
Sorry for your loss, You have to look at this with no emotion to what others think, Its your mothers quality of life and yours that matters. I spent the last year bouncing between Nottingham/Eastbourne/Dorset/North Devon for work/home/father, 6hrs drives on Fridays to spend 3 nights with him to make sure shopping and other needs where met, he had 4 care visits a day and could get around his house until about 2pm when his energy stopped. If my father had been less able I would have moved him into sheltered accommodation 2 mins from my house, but at the time I felt he needed to stay in his home as long as possible. The positive from all my visits was I got to know my father all again, he spent all my money each weekend and we had a good laugh, his ashes came back to me yesterday, obviously im charging his estate storage costs 
. All joking aside, please look at what's best for mum and you, extra carers in home may not be the answer, if she likes attention and wants to be around others then a home or sheltered accommodation is best, good luck
. All joking aside, please look at what's best for mum and you, extra carers in home may not be the answer, if she likes attention and wants to be around others then a home or sheltered accommodation is best, good luckSorry you are going through this.
If it was me I would be trying to get her in a home very close to you or your brother. The location won't matter much for her but will make life a lot easier for you guys - imagine being able to pop in a couple of times a week rather having to drive for ages.
If it was me I would be trying to get her in a home very close to you or your brother. The location won't matter much for her but will make life a lot easier for you guys - imagine being able to pop in a couple of times a week rather having to drive for ages.
Sad times and sorry to hear your in the same situation as I found myself in. It sounds like your doing the right thing, go and see a few homes and you will soon realise which ones are better suited. Some homes might be superb but the residents may be too frail to socialise. It sounds like your mum will want to socialise. We ended up getting my mother a nice room with room to socialise and have family and friends over separate to the bedroom area.
They are not cheap by any means and the cost will only go one way ........ up.
Dont feel guilty about it as there are no other options and its for the best............ For all concerned including you as you and your family will not have to wander whether everything is still OK when the phone doesnt get answered for example. My mother had a couple of falls and the staff were there pretty much straight away which would never have been the case had she stayed home alone despite having a panic alarm.
Its a tough road but hopefully your mum can be pragmatic about here situation and then enjoy the new worry free surroundings and like minded old folk !
Good luck
They are not cheap by any means and the cost will only go one way ........ up.
Dont feel guilty about it as there are no other options and its for the best............ For all concerned including you as you and your family will not have to wander whether everything is still OK when the phone doesnt get answered for example. My mother had a couple of falls and the staff were there pretty much straight away which would never have been the case had she stayed home alone despite having a panic alarm.
Its a tough road but hopefully your mum can be pragmatic about here situation and then enjoy the new worry free surroundings and like minded old folk !
Good luck
I'm sorry for the loss of your dad and the situation you all find yourselves in. I've not used these, but I suspect some guidance to help you https://www.mssociety.org.uk/care-and-support
I think my family had similar issues. My grandfather had ended up in Christchurch, whereas my parents and aunts were in Yorkshire and Scotland. He was mentally sound, but began to struggle with physical stuff.
He was also stubborn and liked where he lived. He got by, with a personal carer (not live in). I'm not sure on the financial stuff, I assume he got some support but was also relatively well off.
It's not easy and I wish you the best of luck.
He was also stubborn and liked where he lived. He got by, with a personal carer (not live in). I'm not sure on the financial stuff, I assume he got some support but was also relatively well off.
It's not easy and I wish you the best of luck.
Risonax said:
My dad had Alzheimers, and mum has been a paraplegic for the last 6 years, but effectively his carer. She had to be admitted to hospital over the summer a couple times, and dad was put into respite care. Visitors thought he was doing well, in the few weeks he was there, but all I saw was a man going rapidly downhill. He walked into the the home, and after 4 weeks, I had to carry him comatose to my car after the care home apparently forgot to tell anyone he hadn't really regained consciousness since a "stumble" a week earlier (he was taken to cardiology, but discharged the same day). He died, 2 weeks later, bedridden, with no one in social servicdes etc bothering to help him. He had to "borrow" the medical bed from my paraplegic mum, while she slept on the floor, by him, as she was so afraid of him rolling out of bed. After he died in the bed, the NHS told my mum to scrub the mattress and reuse it, as chances are, any replacement would be from a dead person anyhow. It seemed callous. A week later some bloke turned up with a bed for him.
If I had my time again, I would have been stronger, and stopped him being put in respite, but I went along with what others wanted. As far as I am concerned, it finished him off. His last few weeks at home were miserable, though they could have been worse.
Its hard to know whether the Home caused his dip, or it would have happened anyhow. But I can't help thinking the former, and intense guilt.
If your mother goes into respite care, make sure the home constantly updates care plans, otherwise she might never get out.
This was why I refused to put my dad into respite care, my sister and his (ex)partner wanted to put him in respite so both could have a holiday, considering my sister visited him once a year and his (ex)partner id whatever she wanted I found it repulsive. I stood my ground and worked with the at home care team, I even got 2 more care visits sorted out for him, alternate weekends I visited and did the father/son thing, no sign of sister for a year until he went to her for Christmas, If I had my time again, I would have been stronger, and stopped him being put in respite, but I went along with what others wanted. As far as I am concerned, it finished him off. His last few weeks at home were miserable, though they could have been worse.
Its hard to know whether the Home caused his dip, or it would have happened anyhow. But I can't help thinking the former, and intense guilt.
If your mother goes into respite care, make sure the home constantly updates care plans, otherwise she might never get out.
NiceCupOfTea said:
We considered 24 hour care in the home but it is out of the question for a number of reasons (cost, security, personal isolation)
My grandmother got to the point where she needed 24 hour care yet was insistent on staying at home. My dad relented, the doctors expecatations were she would last "days" and I'd even been to say goodbye.I think she finally passed away over 3 years later, my dad having spent fortunes and his mental health left in absolute tatters.
For the guilt bit - you only know what you know, and if you weren't informed you can't have changed anything. Don't let that get to you and focus on doing the right thing for everyone going forwards.
Fozziebear said:
Risonax said:
My dad had Alzheimers, and mum has been a paraplegic for the last 6 years, but effectively his carer. She had to be admitted to hospital over the summer a couple times, and dad was put into respite care. Visitors thought he was doing well, in the few weeks he was there, but all I saw was a man going rapidly downhill. He walked into the the home, and after 4 weeks, I had to carry him comatose to my car after the care home apparently forgot to tell anyone he hadn't really regained consciousness since a "stumble" a week earlier (he was taken to cardiology, but discharged the same day). He died, 2 weeks later, bedridden, with no one in social servicdes etc bothering to help him. He had to "borrow" the medical bed from my paraplegic mum, while she slept on the floor, by him, as she was so afraid of him rolling out of bed. After he died in the bed, the NHS told my mum to scrub the mattress and reuse it, as chances are, any replacement would be from a dead person anyhow. It seemed callous. A week later some bloke turned up with a bed for him.
If I had my time again, I would have been stronger, and stopped him being put in respite, but I went along with what others wanted. As far as I am concerned, it finished him off. His last few weeks at home were miserable, though they could have been worse.
Its hard to know whether the Home caused his dip, or it would have happened anyhow. But I can't help thinking the former, and intense guilt.
If your mother goes into respite care, make sure the home constantly updates care plans, otherwise she might never get out.
This was why I refused to put my dad into respite care, my sister and his (ex)partner wanted to put him in respite so both could have a holiday, considering my sister visited him once a year and his (ex)partner id whatever she wanted I found it repulsive. I stood my ground and worked with the at home care team, I even got 2 more care visits sorted out for him, alternate weekends I visited and did the father/son thing, no sign of sister for a year until he went to her for Christmas, If I had my time again, I would have been stronger, and stopped him being put in respite, but I went along with what others wanted. As far as I am concerned, it finished him off. His last few weeks at home were miserable, though they could have been worse.
Its hard to know whether the Home caused his dip, or it would have happened anyhow. But I can't help thinking the former, and intense guilt.
If your mother goes into respite care, make sure the home constantly updates care plans, otherwise she might never get out.
I have dealt with families who have had to trigger admission to hospital in the most desperate circumstances only for their loved one to worsen after admission and it's very upsetting. Families often look for someone to blame - either themselves; the community team who 'fail' to keep the at home or the team looking after their loved one in hospital/care.
Sorry to say this but very few people with dementia die at home (unless another condition supervenes or things progress very quickly) because it just gets overwhelmingly intensive for everyone. 24 hour care at home is prohibitively expensive for most and won't be funded by state unless defined as end of life.
OP desperate situation but you need to get LA social services involved. Mum is entitled to assessment and you are entitled to carer assessment. Be clear and honest with your mum about what you can provide (think marathon not a sprint). Some people have a better relationship with their loved ones if the heavy lifting is left to the professionals and you keep your time, energy and resources for the nice stuff. This will be demanding enough.
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