I’ve been lurking on here for a while as I’ve found it so useful to learn of other people’s experiences with dementia and caring. I’ve decided to finally post as I’m just at a loss as to where to turn to next. My mother is 96 and was diagnosed with dementia 3 years ago although obviously had it for several years before that. She thinks she’s pretty independent at home, with the help of me and carers. She lives 35 miles away from me and for the past few years I’ve been doing the 70 mile round trip 3 or 4 times a week to do her shopping, sort out her medication, and take her out for a drive and a walk in the park and deal with the myriad of problems that seem to occur. On top of this, I seem to spend endless hours on the phone to GPs, social workers, pharmacies etc. She has carers go every morning and then on the days I don’t go, a carer in the evening. They just check she’s taken her medication, prepare a lunch for her and then put a microwave meal in for her in the evening, they do a little light housework, put some cream on her legs and, to be honest very little else. She has absolutely no insight into the stress it puts on me to drive around 1000 miles a month to just keep her in her own home, I’ve given up one career as her needs just meant I had to take so much time off when emergencies occurred. I have a very small business now, but it often doesn’t even cover the cost of my petrol to get to her. I’ve spent 10 years trying to persuade her to move nearer to me but with no success. The stress, along with some personal issues has taken its toll on me and I decided about a year ago that she really needed to be in residential care, nearer to me but then covid hit and I dug deep and carried on. She recently had a fall, and not surprisingly, couldn’t remember to press her link line and was found on the floor by a carer. Obviously I was called after the ambulance and after the hour’s drive, I spent 7 hours in A&E with her before she was sent home as I said I would stay with her for a while. She owns her own home but is depleted of savings and social services contribute a small amount towards her care. I managed to get them to reassess her yesterday, with a letter from her GP agreeing that she should be in residential care and I also have PoA Health and Welfare and also finances. When the social worker asked if she would like to go and live in a care home (a phrase that I would never have used!) obviously she said no! In fact, she went into full hostess mode and said she can manage very well on her own and and that she never falls (she can’t remember) and always showers (the shower hasn’t been touched for over 6 months) and does everything herself. To be fair to the social worker, she seemed to understand my desperation and gave her several opportunities to answer again, but it was like a toddler having a tantrum and she said there was no way she would go into a home. She has no downstairs bathroom or bed and when the SW asked to see her go upstairs she shot up like a rocket - it was like someone had given her a shot of adrenaline!! Normally, I have my heart in my mouth as I watch her go up. The social worker said it was clear she wanted to stay at home and it would have to go to a best interests meeting and if I insisted on using my PoA they could take it to court. They’ve offered to do 4 visits a day but she just tells the carers “my daughter will do that” to almost everything they offer, especially hygiene and housework. I feel totally, drained, let down and know full well that my mum wouldn’t be able to survive if I didn’t ensure everything was in place at a cost to my own health, finances and family life. I would never do anything against her best interests and I just don’t know where to turn to next and wondered if anyone else has had a similar experience.
Wanting my mother to go into residential care
- Thread starter End of my tether!
- Start date
Hi @End of my tether! welcome to DTP
My dad always used to say "My daughter will do that" whenever asked if he needed extra help. Your mum lacks insight and has no idea of how much she is putting on you. Like you I had both POAs for my dad so I simply arranged for my dad to have carers 4 times a day and stepped back to a level I could manage for the sake of my own health and sanity. He went into a care home soon after as he kept falling. Once there he was cleaner and better looked after than I could manage by myself in his home even though I was there everyday.
Like you I was at the end of my tether only I used the phrase as my thread title!
I think you know it's time to do what your mum needs (and you need too) rather than what she wants.
My dad always used to say "My daughter will do that" whenever asked if he needed extra help. Your mum lacks insight and has no idea of how much she is putting on you. Like you I had both POAs for my dad so I simply arranged for my dad to have carers 4 times a day and stepped back to a level I could manage for the sake of my own health and sanity. He went into a care home soon after as he kept falling. Once there he was cleaner and better looked after than I could manage by myself in his home even though I was there everyday.
Like you I was at the end of my tether only I used the phrase as my thread title!
I think you know it's time to do what your mum needs (and you need too) rather than what she wants.
Im afraid that your mother is extremely unlikely to ever agree to move into a care home voluntarily, and all the while you are there plugging all the gaps Social Services will not over-ride her wishes as they will deem that her needs are being met. It is only once her needs are not being met that they will be willing to consider a care home.
Unfortunately, your mothers needs will just go up and up until you reach carer breakdown (you may not be that far off, actually), so the only solution is to do what @Bunpoots did - decide what you can (and more importantly, what you cannot) do and stick to it. You may wish to inform SS of this.
Unfortunately, your mothers needs will just go up and up until you reach carer breakdown (you may not be that far off, actually), so the only solution is to do what @Bunpoots did - decide what you can (and more importantly, what you cannot) do and stick to it. You may wish to inform SS of this.
hello @End of my tether!
a warm welcome to DTP
you simply cannot continue like this - sadly your kindness is just meaning that you are enabling your mother to have things as they are - your mother has been very fortunate to have you looking out for and looking after her, but you are losing too much
you said the SW told you "it would have to go to a best interests meeting and if I insisted on using my PoA they could take it to court. They’ve offered to do 4 visits a day" so I suggest you call the SW's bluff and tell them that you can no longer provide any hands on care so they will have to step in ... it won't be easy on you at all, but it's not easy on you right now either
a warm welcome to DTP
you simply cannot continue like this - sadly your kindness is just meaning that you are enabling your mother to have things as they are - your mother has been very fortunate to have you looking out for and looking after her, but you are losing too much
you said the SW told you "it would have to go to a best interests meeting and if I insisted on using my PoA they could take it to court. They’ve offered to do 4 visits a day" so I suggest you call the SW's bluff and tell them that you can no longer provide any hands on care so they will have to step in ... it won't be easy on you at all, but it's not easy on you right now either
Step back . Harsh perhaps, but as others have said, social services need to see that your mother isn't coping. Accept the 4 carer visits, then wait for the carer visits to fail. Because they will sooner or later .
I feel for you so so much! I think it’s terribly hard but - for your own health - I agree you need to step back. I am in a similar situation with my mum although less far along the road. Alas she has no insight any longer and can’t understand how the endless travelling, the admin, the reassurance and the paperwork are impacting on me! She’s also of course in denial that she needs help. A good friend suggested I remember mum is “on her own journey and you can’t go all the way with her” which sometimes helps as an idea! All the best to you, and remember your journey is important too!! M x
@End of my tether! Yes I was you a couple of years ago although I did live close to dad but it was never ending worrying and I can promise you that it will probably get worse. Do something now before you are completely engulfed. It is true that as long as you are propping your mum up then you won't get any other help so you need to step back. It will be hard and I admit that I never did although I should have. My dad told everyone that he was able to look after himself and he would also add 'my daughter looks after me very well'
Health, finances and family life, yes they will all go by the wayside bit by bit. I still haven't recovered even though dad has been gone over a year.
You have to step back now and just hope that nothing too bad goes wrong, she will be having 4 visits a day and as @Rosettastone57 said something will fail and the carers will not cope and then a home will be the only option.
Don't feel guilty, you are in an impossible position.
Health, finances and family life, yes they will all go by the wayside bit by bit. I still haven't recovered even though dad has been gone over a year.
You have to step back now and just hope that nothing too bad goes wrong, she will be having 4 visits a day and as @Rosettastone57 said something will fail and the carers will not cope and then a home will be the only option.
Don't feel guilty, you are in an impossible position.
Thank you all for your really kind responses. To be honest, I cried as I read them which made me realise how alone I've felt with this as I have no siblings to share either the physical or emotional strain. I know so many of you have been through or are going through something similar. The reason I've never stepped back as you are all suggesting is a damage limitation exercise on my part as when things go wrong it is only ever down to me to pick up the pieces and put in even more effort to put things right. I think I'm now going to have to rethink things. Thank you all again for your very kind support.
Hello again @End of my tether!
My dad’s social worker asked my dad what he needed and he told her “nothing, my daughter will look after me”. I’d already warned her this would happen so we had a separate meeting in dad’s kitchen while he was drinking a coffee I’d just made him and discussed his (and my) real needs.
It eventually occurred to me that, had dad not been needing such a high level of care I would probably have only visited his house once or twice a week. I lived close to him and he visited me regularly before he became ill. Once he’d stopped driving and, worse still, answering the phone, my life ceased to be my own. I suspect this is what has happened with you too.
Dad’s carers did everything for him very efficiently and cheerfully and if I missed a day I knew he was safe - someone would always call me if there was a problem. I can’t describe how relieved I felt once that pressure of total responsibility was lifted. A good team of carers won’t let things slide.
My dad’s social worker asked my dad what he needed and he told her “nothing, my daughter will look after me”. I’d already warned her this would happen so we had a separate meeting in dad’s kitchen while he was drinking a coffee I’d just made him and discussed his (and my) real needs.
It eventually occurred to me that, had dad not been needing such a high level of care I would probably have only visited his house once or twice a week. I lived close to him and he visited me regularly before he became ill. Once he’d stopped driving and, worse still, answering the phone, my life ceased to be my own. I suspect this is what has happened with you too.
Dad’s carers did everything for him very efficiently and cheerfully and if I missed a day I knew he was safe - someone would always call me if there was a problem. I can’t describe how relieved I felt once that pressure of total responsibility was lifted. A good team of carers won’t let things slide.
Hi @End of my tether! Bunpoots has it spot on, sometimes we forget our own "needs" and put them aside for the love one and concentrate on their needs, but in the end this is to our detriment. I would not be in the good place that I am now if it had not been for all the lovely people on here, (MIL been in care for 18 months now and I would not have had the strength to do it without the views of this forum). I did laugh though when you mentioned bat out of hell up the stairs, whilst not good for you it did bring back memories when the SS came round, just remember they all say they can look after themselves, my MIL still says the same!
I think you're absolutely right. Over the years I have taken on more and more and more, almost without noticing and now I realise my life really isn't my own. I think if I step back, my mum's life will not be as fulfilling, but I really can't continue as I am. I'm going to have to change my mum's care agency as they won't do 30 minute visits and I was hoping to avoid this, but it's a small price to pay for stepping back a bit. To be honest, I still feel quite traumatised by it all but I'm heartened to hear that you had a good experience with your dad's carers and that you were able to accept the situation until he did, ultimately, go into care. Thank you so much for your response.
It really is such an amazing forum. Even before I posted I took comfort knowing that so many people were feeling care weary like me and obviously sadly, some so much worse. Yes, the social service visits are really quite surreal as we see our loved ones act in ways they haven't acted for years. My mum even waived at a neighbour and rushed to the door to have a chat - she usually slumps in her chair until the neighbour has passed as she refuses to speak to him!! I'm sure the social worker thought I was a complete charlatan!! Thank you so much for your reply and your support.
The first step is the hardest @End of my tether!
I thought the same as you - that my dad would be upset by having visiting carers but far from it! He really enjoyed their company and I still remember fondly one of the carers phoning me, because dad fancied fish and chips for lunch, and asking me if I minded her buying him something from the chippy (it happened to be her lunchtime too). I told her that was fine and there was a £10 note in the kitchen drawer for things like that she could take. She didn’t touch it but bought his lunch for him herself - bless her!
I knew then that I’d chosen the right agency ?
I thought the same as you - that my dad would be upset by having visiting carers but far from it! He really enjoyed their company and I still remember fondly one of the carers phoning me, because dad fancied fish and chips for lunch, and asking me if I minded her buying him something from the chippy (it happened to be her lunchtime too). I told her that was fine and there was a £10 note in the kitchen drawer for things like that she could take. She didn’t touch it but bought his lunch for him herself - bless her!
I knew then that I’d chosen the right agency ?
Hi,
Can I offload?
Having dealt more than 13 years of dealing ( and actually wiping their bum) with everything about this darn disease I fully sympathise with your plight. Don't know about anyone else but I feel totally abandoned by not just the government but by the NHS too. How it says it puts things in place to look after everyone, but all I'm seeing is that choice is being taken away from all involved. If you want to go into a care home they won't let you unless you sell your parents house? But if you want to go back home and die at your own pace, ie, stop
Can I offload?
Having dealt more than 13 years of dealing ( and actually wiping their bum) with everything about this darn disease I fully sympathise with your plight. Don't know about anyone else but I feel totally abandoned by not just the government but by the NHS too. How it says it puts things in place to look after everyone, but all I'm seeing is that choice is being taken away from all involved. If you want to go into a care home they won't let you unless you sell your parents house? But if you want to go back home and die at your own pace, ie, stop
That sounds like quite a positive experience and I'm hoping to change care agencies once I've heard back from SS as the agency we use won't do visits of less than an hour and if we are to have four 30 minute visits I need to look for something else. This is something I wouldn't have considered before, but I've had to change my mindset and accept, that I can't do everything anymore. Thank you so much for your support.
It sounds like you've had a really horrendous time. Sadly, I agree that the care system, mainly due to funding, but also many other factors, is not really fit for purpose and those needing it most are often left feeling isolated and like you, abandoned. I hope you're able to find the support you need soon.
Hi
We were in a similar position, with Mum falling several times, and having to wait 6/7 hours each time for the ambulance.
As your Mum owns her home, like Mum, she will be self funding, so I would look at possible homes sooner, rather than later.
I would suggest you do arrange a ‘Best Interest’ meeting. This can be arranged through your Mums GP, and will have the GP, SS, Dementia Nurse, and any other interested parties at the meeting. Despite what SS say, it is likely the GP or dementia nurse can override SS, and allow you to place your Mum in care, if they think your Mum is at risk. Obviously, if you tell them during the meeting that you will be withdrawing ‘all support’ for health reasons, this would have to be taken into account (even if you would not actually do this).
After the umpteenth fall, we once again phoned SS and said we needed Mum to go into a home (we had already viewed lots and decided where we wanted her to go, which was easier as we were self funding). SS were not interested and said they would arrange a visit in due course.
Unfortunately, at this point I lost it. I looked up who the Head of the SS was in our area, and found her email address. I took a picture of Mum laying on the floor, where she had wet herself as the ambulance had not arrived, and emailed it to her. I said if I did not get someone out in the next hour, I would send it to the local paper. There was a social worker in the house within 30 minutes…….
It took time to arrange Mums admission, but as Mum would normally fall during the night, SS paid for 7 days of full time night cover, until she could be admitted.
I felt bad knowing Mum would be leaving her home for the last time on the day she left, but once in the home, she settled well. On the one or two occasions she asked ‘when am I going home’, I told her that there had been water damage due to a burst pipe, and they were kindly letting her stay here until it was fixed. After a couple of weeks she never mentioned it again…….
We were in a similar position, with Mum falling several times, and having to wait 6/7 hours each time for the ambulance.
As your Mum owns her home, like Mum, she will be self funding, so I would look at possible homes sooner, rather than later.
I would suggest you do arrange a ‘Best Interest’ meeting. This can be arranged through your Mums GP, and will have the GP, SS, Dementia Nurse, and any other interested parties at the meeting. Despite what SS say, it is likely the GP or dementia nurse can override SS, and allow you to place your Mum in care, if they think your Mum is at risk. Obviously, if you tell them during the meeting that you will be withdrawing ‘all support’ for health reasons, this would have to be taken into account (even if you would not actually do this).
After the umpteenth fall, we once again phoned SS and said we needed Mum to go into a home (we had already viewed lots and decided where we wanted her to go, which was easier as we were self funding). SS were not interested and said they would arrange a visit in due course.
Unfortunately, at this point I lost it. I looked up who the Head of the SS was in our area, and found her email address. I took a picture of Mum laying on the floor, where she had wet herself as the ambulance had not arrived, and emailed it to her. I said if I did not get someone out in the next hour, I would send it to the local paper. There was a social worker in the house within 30 minutes…….
It took time to arrange Mums admission, but as Mum would normally fall during the night, SS paid for 7 days of full time night cover, until she could be admitted.
I felt bad knowing Mum would be leaving her home for the last time on the day she left, but once in the home, she settled well. On the one or two occasions she asked ‘when am I going home’, I told her that there had been water damage due to a burst pipe, and they were kindly letting her stay here until it was fixed. After a couple of weeks she never mentioned it again…….
We had a bed monitor. If Mum got out of bed during the night, and if pressure was not back in the pad within 20 minutes, it would trigger a call to careline. They would ring us and we would check in the cctv we had installed in her bungalow. Quite often she had taken herself into the lounge and fallen asleep in an armchair, but on several occasions we could see she had fallen and would call an ambulance, but rarely would they turn up before 4-6 hours.
hi i have been my mum and dads sole carer for the last 3 years, they refused all help and i did as much as i could do - im retired so felt i had enough time to look after mum and dad, they live near dad had cancer mum alzheimers. as time went on i found they were my first thoughts on waking and going to sleep and i had constant worry i loved them both dearly they have been wonderful parents and i know they would do anything for me. i always promised that if anything happened to either of them that the other could come and live with us. dad died on 10th may , mum came to us straight away, developed pneumonia within 4days and after 4 weeks in hospital i have had to make the decision that mum should go into residential care- she has been there 3 days now , the sadness and guilt i feel is overwhelming, mum is bedridden, doubly incontinent , cannot feed herself this is just a few of the problems she has but is still my lovely kind mum- it is so hard but despite all this deep down i know this decision was right- my health and happiness was definitely suffering -i was missing seeing my grandchildren and felt my life had been mapped out for me- i can understand how many of you are feeling and making such a big decision on behalf of someone you love is really difficult- im hoping mum will settle , best wishes to you E - it sounds as if you are reaching the point where you have to do as i have done
