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Carers UK Forum • Long gasp of frustration from a newbie
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Long gasp of frustration from a newbie

Posted: Fri Jun 04, 2021 8:38 pm
by Faz
Hello all. So many familiar experiences here. I don't know if that makes me feel better - because you understand - or worse - because I wouldn't wish this on any of you.

I notice many first posts are long gasps of frustration and torture. Here's mine.

I've been dealing with Mum's mental health issues since I was a tot. Dad was, erm, unkind, to put it mildly. He got a brain tumour when I was 27 and gradually declined. For 14 awful years he was home with Mum. Me supporting from not so nearby. No help from the system: his cancer was "cured" and even though treatment left him with a condition very low Alzheimer's, it wasn't Alzheimer's so we got nothing. Now he's in a care home and still we get precious little to help pay because he's not on a traditional dementia path.

Now Mum's got dementia. We moved her to a retirement complex nearby but too late, I think. Delusions have started. She's always telling me someone comes in a night. Of course one has to consider the possibility it's true but after getting her permission to put a security camera up, I'm sure it's delusions. Referral to be local specialist came through in May for an appointment in December.

She doesn't want to stay alone. I understand she's scared and it's all very real to her but I can't deal with her mental health issues daily. I have been caring for her since I was a small child, then her and Dad, now this... and I am tired. I have a job but given up on a career. In a short set l sweet spot I managed to find a wonderful man to marry. He's the only person I ever managed to date! Lucky he's a keeper. But there are limits for him. She is my life. Not him. We had to give up on having children. I'm now 43 and we had agreed as a couple to give having a family a go this year and get Mum help. But now Mum's delusions have started add by there's none to calm her but me and by staying over. So figuring fertility is a stupid idea. But this childlessness, it's killing me. How am I to get through looming menopause without resenting her for consuming at least 40 of my 43 years?

I know know. Not her fault etc etc. Her vulnerability makes her the priority. There is no future but her.

Re: Long gasp of frustration from a newbie

Posted: Sat Jun 05, 2021 8:38 am
by Karen Dee
Hello Faz. It doesn't seem right that you should have to make so many sacrifices. The trouble is that by being such a caring, loving daughter you are ignoring your own needs. And what about your husband? It isn't very nice for him either, he must feel a bit neglected while you're putting your mum first all the time.
As your mum is in a Retirement complex couldn't carers on site help comfort and reassure your mum at nightime?
My advice is to start putting yourself and your husband first. Don't allow your mum to take over your life like this.

Re: Long gasp of frustration from a newbie

Posted: Sat Jun 05, 2021 9:01 am
by bowlingbun
To be brutally honest, the only way you will ever get your life back is when mum dies or moves into a home.
You do NOT have to sacrifice your whole life for her.
She's been a useless mum, should have encouraged you to fly the nest and follow your dreams.
I know it's not her fault, but we all have a responsibility for our own happiness.
She has no right to expect you to do ANYTHING for her.

Re: Long gasp of frustration from a newbie

Posted: Sat Jun 05, 2021 10:07 am
by Lucy_21021
Hi Faz,
Welcome to the forum!

That's a lot of sacrifices you've had to make over the years. Its great you have reached out on the Carer's UK forum. You're not alone, we are sure that many on here will understand exactly how you feel and offer support. Carers UK may be able to help give you some guidance or information in relation to:
Benefits and financial support
Carers' assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions


Best Wishes,

Lucy.

Re: Long gasp of frustration from a newbie

Posted: Mon Jun 14, 2021 12:21 pm
by Faz
Thank you all for your support. I've been reading so much on here and there are so many burnt out, aching hearts. As I said before, I think it makes me feel worse to know there are so many of us because nobody should have to suffer like this. Not the cared for and not the carers. But life ain't like that

But as my colleague told me with a shrug the other day, "We love 'em, so we have to. What you gonna do?" It's so complex. It doesn't matter if a parent has been supportive or not. Society does not support the vulnerable to it is left to individuals. That's why we're all in this pickle, isn't it? It may take a village to raise a child but it also takes a village to look after its other vulnerable people who may be less joyful to be with.

Re: Long gasp of frustration from a newbie

Posted: Mon Jun 14, 2021 12:23 pm
by Faz
Lucy_21021 wrote:
Sat Jun 05, 2021 10:07 am
Carers UK may be able to help give you some guidance or information in relation to:
Benefits and financial support
Carers' assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions
Thanks for pointing me at places to get help and advice. This will be so useful.

Indeed I am thinking to get night help but it's so expensive. We don't get attendance allowance yet because the memory service letter was so positive compared to our experience. Not that attendance allowance would cover even one night of care.

And they have not appointed us a community worker. So wary of those. When it was my Dad and I told a social worker how he was up 12 times a night and I was exhausted, she told me it was my fault for not sleeping at the foot of Dad's bed as she had for four years with her mother. He fell 70 times in a year - 14 times resulting in an ambulance called - and the OT deemed him fine, the social worker told us we had to take him home because otherwise it would prove we didn't want him.

Now Dad's in a home. We mostly pay for it ourselves because though he can't walk and can barely speak, he's "fine".

So I've been reluctant to get social services involved with Mum. But I suppose I must because the cash has pretty much all gone toward Dad's care.

I'll look around on this site for help - thank you.

Re: Long gasp of frustration from a newbie

Posted: Mon Jun 14, 2021 1:31 pm
by bowlingbun
You don't have to have a formal diagnosis to get Attendance Allowance!
Get that application in asap.
If dad has such severe needs he is in a home, then help may be available.
At very least he should be getting AA.
Has he ever had a formal financial assessment from SSD?
You say the money is almost gone, but if he has under £46,000 SSD should be paying some or all his fees.
If mum, in her own right, has less than £23,000, then she is entitled to some or all of her care at her home funded by Social Services.

Re: Long gasp of frustration from a newbie

Posted: Sun Jul 18, 2021 9:55 am
by Faz
bowlingbun wrote:
Sat Jun 05, 2021 9:01 am
To be brutally honest, the only way you will ever get your life back is when mum dies or moves into a home.
You do NOT have to sacrifice your whole life for her.
She's been a useless mum, should have encouraged you to fly the nest and follow your dreams.
I know it's not her fault, but we all have a responsibility for our own happiness.
She has no right to expect you to do ANYTHING for her.
You are right with the "brutally honest" comment but I cannot agree to the latter. "Forgive them for they know not what they do" is the point and one which you make. But I'm hardly going to be happy if I just leave her to it to self actualise. I hope that your life has moments of joy and is awash with ribbons of glorious hope. One of the reasons I can't bear to be on this forum much is because it's easy to see that there are so many in the same pain. If it were just me, at least I could be happy for everyone else. Knowing it isn't just me makes me feel all the more hopeless.

Re: Long gasp of frustration from a newbie

Posted: Sun Jul 18, 2021 9:57 am
by Faz
bowlingbun wrote:
Mon Jun 14, 2021 1:31 pm
You don't have to have a formal diagnosis to get Attendance Allowance!
Get that application in asap.
If dad has such severe needs he is in a home, then help may be available.
At very least he should be getting AA.
Has he ever had a formal financial assessment from SSD?
You say the money is almost gone, but if he has under £46,000 SSD should be paying some or all his fees.
If mum, in her own right, has less than £23,000, then she is entitled to some or all of her care at her home funded by Social Services.
Thanks. I have gathered information and will be submitting that application for Mum.
My Dad does get some NHS funding but we recently sold the family home in order to move Mum closer so his funds will last a while now.

Hope your situation is not too exhausting and that the bright summer sunshine has an opportunity to warm and comfort your heart.

Re: Long gasp of frustration from a newbie

Posted: Sun Jul 18, 2021 12:29 pm
by bowlingbun
I cared for my mum in various ways from 1976 until she died in a nursing home.
My son was brain damaged when he was born, in 1979.
Mum in law got dementia, father in law had bowel cancer and heart failure, dad had prostate cancer, and mum had 28 different ailments listed. All five entitled to DLA or AA at the same time, but one too stubborn to apply. I've substantially supported other relatives in desperate need.
I know how difficult conflicting demands are.
Once you accept that you can't always be there for everyone, to do everything, it's easier.
Concentrate of making sure mum has what she needs, but not doing it all yourself.
The more help she accepts, and you can arrange, the longer she can stay home.
However, most people with dementia end up needing a team of carers 24/7 in residential care.
"Self Actualisation"?.

There are many things I wanted to do but couldn't, but I've done many things that would have been impossible if I'd worked "normally". When I tell people of the things I've done, they are very surprised. I was stopped for speeding on a motor bike the very first time I took it on the road, I've shipped steam engines round the world (as a result the Australian government passed a law!) and I started and ran a lorry club for 20 years!
I know I can meet almost any challenge I agree to take on, but also know the "real" me is happiest behind a sewing machine!
Life is what you make it.