I don't want my mum to go into care

[canary]

I've been reading other threads and I thought everyone on here was going to be loving children towards their parents .

I think that there is a general perception among people who are not dealing with dementia that people who have dementia are sweet old ladies who have gone a bit dotty, and that carers lives consist of making cups of tea and smiling benignly. The truth is that even the most loving of children feel exasperated, resentful and frustrated at times and it is doubly hard if you never had a good relationship to start with.

Im glad your mum will be moving into a nice care home. I understand what you mean about the cost of care and it often doesnt seem fair, but I think you will just have to be like the rest of us and bite that bullet.

 

[Sirena]

I'm glad to hear your sister has found a care home for your mother. As you say, her stay will probably become permanent.

My mother pays £800 pw which I think is reasonable, I knew people paying over £1k several years ago so I had expected it to be more. You've seen your mother's behaviours and when you think of what is involved it's not unreasonable - just over £100 a day for food, heating, laundry, activities, and carers on hand 24/7 to help with every need. I would never have considered doing any hands-on caring, but as my mother's attorney I have the responsibility to ensure she gets the care she needs, and that costs money. The money does at least give choice - I was able to choose what care she got, and when she got it. Without money you are at the mercy of Social Services.

 

[arielsmelody]

I agree with the message above - although obviously the weekly figure looks very high written down, living at home is not completely free either - there are utilities bills to pay, food, insurance and whatever your mum's contribution is to her care visits. And your mum's pension will obviously be used to pay towards it as well (and attendance allowance), it won't be 100% funded out of her savings.

 

[Sirena]

I agree with the message above - although obviously the weekly figure looks very high written down, living at home is not completely free either - there are utilities bills to pay, food, insurance and whatever your mum's contribution is to her care visits. And your mum's pension will obviously be used to pay towards it as well (and attendance allowance), it won't be 100% funded out of her savings.

Yes that's a good point, my mother has a monthly income of about £1k (pension, attendance allowance) which pays towards the fees.

 

[Sarasa]

Glad your sister had found a place for your mum. It'll be good for you to go and have a look for yourself. Having a loved one in a home involved a different kind of care and things can still be difficult, so the more you can take the stress off your sister the better. Although being in a home means mum is safe I still feel fairly stressed out by various things. My sister in law has helped where she can but my brother is seriously ill which complicates things.
BTW £900.00 is an awful lot less than what we're paying for mum.

 

[mickeyplum]

Thanks to everyone who responded. I think my BIL is frustrated because he sees nothing is progressing regarding mum's care . I have spoken to my sister who it seems , is taking out her frustrations after seeing mum, on him. So he is bearing the brunt of her anger at the situation . Anyway, they have found a care home nearby with a secure dementia unit and now arranged some respite for mum. The home, apparently have vacancies, so I expect it will probably be permanent. I am going to see the home myself to see what it is like . I understand the fees are £900 a week . I still find it difficult to understand how the fees are so high . I know I got a hard time from forum members and I understand why. But it still doesn't make it any easier to deal with the feeling of resentment against my mum. I've been reading other threads and I thought everyone on here was going to be loving children towards their parents . I've seen some posts saying how awful their parents were, but I admire those who can rise above it.

I understand why you've been given a hard time on Tipping Point but at the same time, I'm sure you are truly not as money-grabbing as you sounded. None of us can know how sad you were when you posted on here an let it all hang out in such a way that shocked. We are all human with our strengths and weaknesses.
My husband is 91 and nowhere near as advanced as your mother but I still dread the day when he has to go in a home and start using up the money we plan to give to our family. I'm sure they will say it doesn't matter about the money but it matters to me.
I'm glad the advice on here has encouraged you to work as a team with your sister and bil and hope you will be a big support to each other. good luck

 

[Rosettastone57]

I think that there is a general perception among people who are not dealing with dementia that people who have dementia are sweet old ladies who have gone a bit dotty, and that carers lives consist of making cups of tea and smiling benignly. The truth is that even the most loving of children feel exasperated, resentful and frustrated at times and it is doubly hard if you never had a good relationship to start with.

Im glad your mum will be moving into a nice care home. I understand what you mean about the cost of care and it often doesnt seem fair, but I think you will just have to be like the rest of us and bite that bullet.

My mother-in-law was paying £1300 a week last year in the south east. However, compared to the costs of her care agency , it was actually good value for 24/7 supervision. I think you were just trying to put off the inevitable, most persons with dementia on their own, probably go into care.
My husband and I bitterly resented dealing with his mother and I can understand your feelings. Believe me, she was a deeply unpleasant individual who had emotionally abused her own children. But when it came to care,there really was no option, but to use her money for her only. I actually admired your honesty on here

 

[DesperateofDevon]

Thanks to everyone who responded. I think my BIL is frustrated because he sees nothing is progressing regarding mum's care . I have spoken to my sister who it seems , is taking out her frustrations after seeing mum, on him. So he is bearing the brunt of her anger at the situation . Anyway, they have found a care home nearby with a secure dementia unit and now arranged some respite for mum. The home, apparently have vacancies, so I expect it will probably be permanent. I am going to see the home myself to see what it is like . I understand the fees are £900 a week . I still find it difficult to understand how the fees are so high . I know I got a hard time from forum members and I understand why. But it still doesn't make it any easier to deal with the feeling of resentment against my mum. I've been reading other threads and I thought everyone on here was going to be loving children towards their parents . I've seen some posts saying how awful their parents were, but I admire those who can rise above it.

You sound so much better in yourself, the cost can seem astronomical but it’s 24hr care & they sort out everything food, drinks, assessments, changing & toilet issues, appointments,Activities ( at the home joining in optional) clothes & bedding laundered etc. I don’t go on holiday but bed & breakfast on average is day £60 then if you add in your meals...... So breaking it down for 24 hour care in my head it seems reasonable.
( though I’m horrified at how much bed & breakfast costs!!!)
You could rent your Mums house out to cover some of the bills as you said your Mum was self funding, that along with attendance allowance at the higher rate would be helpful towards cost.

It seems a lot of money I know but it’s a cost for care 24 hours a day. I put in in context of the minimum hourly wage x 24 hours x 7 days a week.

It’s an emotive time for all, & none of us are at our best in these situations; I’m glad you have spoken to you sister. My husband along with my adult children were saturated by my distress at my own mums situation - so I can understand both points of view & it’s such a difficult situation.

I know that some Mums are fantastic & some .. well they weren’t suited to motherhood, is the polite phrase.

Keep posting
Let us know how things go, please

 

[Duggies-girl]

I am glad that your sister has found an available care home @Lemonjelly and I hope your mum settles in quickly. It may prove to be a huge weight off all your minds and you will probably breathe a huge sigh of relief eventually. £900 pounds a month may sound a lot but in reality it works out at just over £5 an hour which is a bit of a bargain as far as I can see.

Your mum will be safe and the family will be less frazzled. Best wishes.

 

[TNJJ]

That’s not bad.Some of ours are over a £1000 a week.

 

[Beate]

I'm afraid to say that £900 a week for a care home is a very reasonable price compared to what some here pay.

 

[Glokta]

LemonJelly, it’s bloody hard work having a mum who has been abusive, unreasonable and difficult towards you throughout your life but then finding that that she has dementia and having to care for her is awful. I’m in that position, so are you and we are not alone here. At first I though “it serves her right, it’s her badness coming out” but to watch this domineering woman deteriorate, scared, alone, angry, with no control. It’s awful. That could be me. It’s humbling as much as it is soul destroying. I would love to be recompensed for the torments she has meted out, all the tears, the years I missed with other family members, especially my Dad, because she was so jealous that I wasn’t permitted to see them. But it’s not going to happen. It wouldn’t have anyway, because she was unable to recognise her behaviour as injurious to others. And in truth, nothing can recompense us. My husband is terribly angry about my involvement, because it’s sucking up all my spare time and energy, but for myself, I have to live with myself after all this. You aren’t on your own, be kind to yourself.

 

[DesperateofDevon]

LemonJelly, it’s bloody hard work having a mum who has been abusive, unreasonable and difficult towards you throughout your life but then finding that that she has dementia and having to care for her is awful. I’m in that position, so are you and we are not alone here. At first I though “it serves her right, it’s her badness coming out” but to watch this domineering woman deteriorate, scared, alone, angry, with no control. It’s awful. That could be me. It’s humbling as much as it is soul destroying. I would love to be recompensed for the torments she has meted out, all the tears, the years I missed with other family members, especially my Dad, because she was so jealous that I wasn’t permitted to see them. But it’s not going to happen. It wouldn’t have anyway, because she was unable to recognise her behaviour as injurious to others. And in truth, nothing can recompense us. My husband is terribly angry about my involvement, because it’s sucking up all my spare time and energy, but for myself, I have to live with myself after all this. You aren’t on your own, be kind to yourself.

It’s more common experience than I ever expected. But I understand exactly what & where you are coming from. You have to be able to live with yourself afterwards, but there is a medium ground that I have difficulty achieving at times - easy to be consumed by the dementia journey.

 

[Palerider]

Thanks to everyone who responded. I think my BIL is frustrated because he sees nothing is progressing regarding mum's care . I have spoken to my sister who it seems , is taking out her frustrations after seeing mum, on him. So he is bearing the brunt of her anger at the situation . Anyway, they have found a care home nearby with a secure dementia unit and now arranged some respite for mum. The home, apparently have vacancies, so I expect it will probably be permanent. I am going to see the home myself to see what it is like . I understand the fees are £900 a week . I still find it difficult to understand how the fees are so high . I know I got a hard time from forum members and I understand why. But it still doesn't make it any easier to deal with the feeling of resentment against my mum. I've been reading other threads and I thought everyone on here was going to be loving children towards their parents . I've seen some posts saying how awful their parents were, but I admire those who can rise above it.

Its all very difficult, if things were the other way round and my dad was alive with dementia and mum had died I probably wouldn't be here, I wouldn't be able to commit so much time and energy to someone who I never got on with especially after drink. But even with mum who I have always been close with, some days can test me to the point of despair, and we were good friends.

Just to say I didn't mean to give you a hard time in my last response, but sometimes our expectations of how things should turn out never materialise unfortunately and it does make it doubly hard to make sense of it all.

At least it seems for now you have a solution, it is tough, and I dread the day when I have to let go of all of this as mum deteriorates to the point of needing 24/7 care.

 

[Palerider]

I think that there is a general perception among people who are not dealing with dementia that people who have dementia are sweet old ladies who have gone a bit dotty, and that carers lives consist of making cups of tea and smiling benignly. The truth is that even the most loving of children feel exasperated, resentful and frustrated at times and it is doubly hard if you never had a good relationship to start with

Very true @canary and succinctly put

I think I should post this on my FB page, perhaps some friends would grasp the situation more?

 

[Champers]

Thanks to everyone who responded. I think my BIL is frustrated because he sees nothing is progressing regarding mum's care . I have spoken to my sister who it seems , is taking out her frustrations after seeing mum, on him. So he is bearing the brunt of her anger at the situation . Anyway, they have found a care home nearby with a secure dementia unit and now arranged some respite for mum. The home, apparently have vacancies, so I expect it will probably be permanent. I am going to see the home myself to see what it is like . I understand the fees are £900 a week . I still find it difficult to understand how the fees are so high . I know I got a hard time from forum members and I understand why. But it still doesn't make it any easier to deal with the feeling of resentment against my mum. I've been reading other threads and I thought everyone on here was going to be loving children towards their parents . I've seen some posts saying how awful their parents were, but I admire those who can rise above it.

I get completely where you’re coming from. Being an only child of a horribly abusive and spiteful mother, I struggle between the “karma” and the morally right decision. My mother was so unbelievably judgemental on others that succumbed to dementia - almost gleeful and full of, “that’ll never happen to me” that there’s a huge irony that she’s going down the same path. She even dropped a long standing friend once she was diagnosed almost as though mother thought it was catching.

She was also incredibly controlling with money. Used it to try and buy love from myself and her grandchildren. Sadly, if she’d been a kinder person, she wouldn’t have had to resort to these tactics. She used to promise my children she’d buy them all sorts of things - even when I asked her not to - then renege on what she had said and accuse the children of either lying or just being mercenary and only visiting her when they wanted something.

She’s always been very comfortably off (only because she inherited from my much adored father) but happily watched my husband and I struggle financially for several years ( we never, ever asked for help) but she would regularly tell us that one day, all her assets would be ours fully knowing that it was then that the whole family could have benefited, not in the far distant future. Luckily, we made our own success and now no longer need any help from her but I agree with you, Lemonjelly, there’s a small part of me that feels I should have some financial recompense for all her despicable treatment of me and that she was only in her wealthy position from my father’s estate. I would certainly take great pleasure in passing the whole lot directly to my children - therefore thwarting her wishes in her will. I did suggest this once and she was insistent that it was for me and me only!

The charitable side thinks, as others have said, it’s still her money and I have a moral duty to ensure she receives the care any human being should expect. She has, for many years, also had an almost obsessive fear of ever being put in in a care home so it’s a paradox that she clearly looks like she will be heading there and paying for the pleasure.

Plus, there is NO way I could even consider having her to live with us, irrespective of her dementia. She has always thrived in confrontations and creating disharmony which has become even more pronounced since diagnosis. She has always been deluded that I loved her unconditionally as a daughter should love her mother but I’ll do the ‘right’ thing but no more than that.

 

[Rosettastone57]

I get completely where you’re coming from. Being an only child of a horribly abusive and spiteful mother, I struggle between the “karma” and the morally right decision. My mother was so unbelievably judgemental on others that succumbed to dementia - almost gleeful and full of, “that’ll never happen to me” that there’s a huge irony that she’s going down the same path. She even dropped a long standing friend once she was diagnosed almost as though mother thought it was catching.

She was also incredibly controlling with money. Used it to try and buy love from myself and her grandchildren. Sadly, if she’d been a kinder person, she wouldn’t have had to resort to these tactics. She used to promise my children she’d buy them all sorts of things - even when I asked her not to - then renege on what she had said and accuse the children of either lying or just being mercenary and only visiting her when they wanted something.

She’s always been very comfortably off (only because she inherited from my much adored father) but happily watched my husband and I struggle financially for several years ( we never, ever asked for help) but she would regularly tell us that one day, all her assets would be ours fully knowing that it was then that the whole family could have benefited, not in the far distant future. Luckily, we made our own success and now no longer need any help from her but I agree with you, Lemonjelly, there’s a small part of me that feels I should have some financial recompense for all her despicable treatment of me and that she was only in her wealthy position from my father’s estate. I would certainly take great pleasure in passing the whole lot directly to my children - therefore thwarting her wishes in her will. I did suggest this once and she was insistent that it was for me and me only!

The charitable side thinks, as others have said, it’s still her money and I have a moral duty to ensure she receives the care any human being should expect. She has, for many years, also had an almost obsessive fear of ever being put in in a care home so it’s a paradox that she clearly looks like she will be heading there and paying for the pleasure.

Plus, there is NO way I could even consider having her to live with us, irrespective of her dementia. She has always thrived in confrontations and creating disharmony which has become even more pronounced since diagnosis. She has always been deluded that I loved her unconditionally as a daughter should love her mother but I’ll do the ‘right’ thing but no more than that.

I can emphasize with this totally. My sister in law felt she should have some financial recompense for the dreadful way she was treated by my mother-in-law. I can see to an extent where @Lemonjelly is coming from, but it is about doing the right thing.

 

[Helly68]

My father used to moan on endlessly about what he saw as a "waste of money" when we were self-funding Mummy. I never really saw it that way, but I think it was his frustration and our fear at how much money was involved and how quickly it was spent. Fear comes out in different ways. I

f it is any consolation, I have it on authority that most care homes have very small profit margins. The money is eaten up on things like staffing (day and night) and by that I mean the number of staff needed - sadly most CH staff earn very low wages. I feel it was a retrograde step when CH moved out of council remit and into commercial companies. However, we have gone too far down that road to change....

 

[Jaded'n'faded]

I get completely where you’re coming from. Being an only child of a horribly abusive and spiteful mother, I struggle between the “karma” and the morally right decision. My mother was so unbelievably judgemental on others that succumbed to dementia - almost gleeful and full of, “that’ll never happen to me” that there’s a huge irony that she’s going down the same path. She even dropped a long standing friend once she was diagnosed almost as though mother thought it was catching.

She was also incredibly controlling with money. Used it to try and buy love from myself and her grandchildren. Sadly, if she’d been a kinder person, she wouldn’t have had to resort to these tactics. She used to promise my children she’d buy them all sorts of things - even when I asked her not to - then renege on what she had said and accuse the children of either lying or just being mercenary and only visiting her when they wanted something.

She’s always been very comfortably off (only because she inherited from my much adored father) but happily watched my husband and I struggle financially for several years ( we never, ever asked for help) but she would regularly tell us that one day, all her assets would be ours fully knowing that it was then that the whole family could have benefited, not in the far distant future. Luckily, we made our own success and now no longer need any help from her but I agree with you, Lemonjelly, there’s a small part of me that feels I should have some financial recompense for all her despicable treatment of me and that she was only in her wealthy position from my father’s estate. I would certainly take great pleasure in passing the whole lot directly to my children - therefore thwarting her wishes in her will. I did suggest this once and she was insistent that it was for me and me only!

The charitable side thinks, as others have said, it’s still her money and I have a moral duty to ensure she receives the care any human being should expect. She has, for many years, also had an almost obsessive fear of ever being put in in a care home so it’s a paradox that she clearly looks like she will be heading there and paying for the pleasure.

Plus, there is NO way I could even consider having her to live with us, irrespective of her dementia. She has always thrived in confrontations and creating disharmony which has become even more pronounced since diagnosis. She has always been deluded that I loved her unconditionally as a daughter should love her mother but I’ll do the ‘right’ thing but no more than that.

Hello @Champers , so much of your story is true for me too. For years my mother would proudly boast that I'd get 'plenty' when she died - every time I saw her! Yet she never helped me when I needed it.

Naively, neither of us imagined any money would be needed for care so when dementia arrived I got a heck of a shock. Suddenly I was responsible for this unpleasant old woman - something I had never envisaged and certainly didn't want to do. I was equally shocked over the amount of money a care home costs every week. (And in our case that's less than a lot of people are paying.) Mum went from completely independent living (no diagnosis) to hospital then to a care home as she needed 24 hour care, so it was very sudden and a steep learning curve for me.

3 years on, I have....mellowed I suppose. I've realised I have NO inheritance, simply because mum isn't dead. When she does die, maybe there will be some money left - I sincerely hope so! At first I was concerned to preserve every penny of her money but gradually I realised I was treating it as my money and it isn't. I could cut her hairdressing down to once a month instead of once a week but mum has very little quality of life and likes having her hair done. I've started to think 'how would it be if it were me and my kids were looking after things?' And although she's always been unplesant, not everything she did was bad and I should not ignore all the good things she did (probably) that I have conveniently forgotten. In the end it comes down to this: she is still my mother. I visit and make sure she's OK - I don't have to cuddle her and shower her with love.

And I have to live with myself afterwards so most of what I do is actually for my own peace of mind. Perhaps that is a thing - the Selfish Carer. Or the Reluctant Carer - that's me.

 

[witts1973]

Hello @Champers , so much of your story is true for me too. For years my mother would proudly boast that I'd get 'plenty' when she died - every time I saw her! Yet she never helped me when I needed it.

Naively, neither of us imagined any money would be needed for care so when dementia arrived I got a heck of a shock. Suddenly I was responsible for this unpleasant old woman - something I had never envisaged and certainly didn't want to do. I was equally shocked over the amount of money a care home costs every week. (And in our case that's less than a lot of people are paying.) Mum went from completely independent living (no diagnosis) to hospital then to a care home as she needed 24 hour care, so it was very sudden and a steep learning curve for me.

3 years on, I have....mellowed I suppose. I've realised I have NO inheritance, simply because mum isn't dead. When she does die, maybe there will be some money left - I sincerely hope so! At first I was concerned to preserve every penny of her money but gradually I realised I was treating it as my money and it isn't. I could cut her hairdressing down to once a month instead of once a week but mum has very little quality of life and likes having her hair done. I've started to think 'how would it be if it were me and my kids were looking after things?' And although she's always been unplesant, not everything she did was bad and I should not ignore all the good things she did (probably) that I have conveniently forgotten. In the end it comes down to this: she is still my mother. I visit and make sure she's OK - I don't have to cuddle her and shower her with love.

And I have to live with myself afterwards so most of what I do is actually for my own peace of mind. Perhaps that is a thing - the Selfish Carer. Or the Reluctant Carer - that's me.

That was nice to read,you're honesty jumped off the page,best wishes to you