Just can't...

We are lucky to have a bit of help to care for Mum and her mid-stage dementia now. This is good and I am ever so thankful to have help.

But somehow I thought it would help me more. That I’d be able to think a little or not feel sick and fluttery all the time.

I don’t wish to be ungrateful. Thing is, I feel on tenterhooks all the time and there are problems (Mum’s worst moods and confusions and anger and delusions) that I have to step in for. I know this should be fine. Carer is lovely and a human being and should not have to suffer unduly.

Thing is, it isn’t fine for me. I just can’t… I don’t know. I have had enough. I want Mum in a care home where they can attend to her needs 24/7 and for her to be safe… and their responsibility. That’s me. It’s not fair on her and she would feel ever so abandoned. She already does, now I’m back working and carer is there while I am not. She wants me.

I think she has the ability to decide her future since she still knows me and gives a good show of understanding (though afterwards I get all the muddled questions). She’s fit and healthy and young so apart from the confusions/delusions/not knowing where she is/memory loss, she’s fine and we should be helping her stay at home and be as independent as she can and not deprive her of her liberty. I get this. I know what’s best for her is best. But I just… can’t… I’m burnt out from 40 years of attending to her mental health, my father’s brain tumour + effects and now my mother’s dementia.

Social services keep telling me she’s basically fine and won’t do any sort of assessment (I am going to ask GP for a referral). From previous experience with Dad - they said he was fine and capable physically and mentally right up to the point he couldn’t hold a spoon (9 years after losing all short term memory and 2 years after falling twice a week). So not holding out any hope there.

What do you do when you “just can’t…” but have to?

You tell Social Services that you CANNOT be forced to care, that they MUST arrange all the care mum needs.
How old is mum?
You need evidence of how bad things are behind closed doors, especially the aggression. Some people don’t like the idea of secretly recording on their phones, but the objective is to keep mum safe.

Thank you for the tip about evidence collection. I will have a good, deep think on it.

Mum is only 75. And she is so bodily fit and healthy.

I am so scared of social services. Once, with Dad when he was getting up a dozen times a night and nearly falling every time and being aggressive and confused, the social worker told me I should be sleeping at the foot of Dad’s bed like she did for four years with her Mum. Another social worker told me and my mother we were making up Dad’s problems, despite the huge scar above his ear from tumour removal, a dementia diagnosis and a diagnosis of serious mental health issues and my mother being put on the “at risk” register. (Dad passed away, in case you were wondering) I am not sure I have courage for all that again with Mum… Are these everyone’s experiences of social services?

It looks like you have been having a very hard and long time caring for your parents.
No advice here, just best wishes for you. No wonder you are exhausted and want to share caring responsibilities. I don’t see anything wrong with that.
Please don’t be hard on yourself.

I don’t have any experience or knowledge to help you, I just want to wish you well, hoping you get sorted with SS.
Put the past experiences behind you and start afresh with your gathered evidence and speak with her GP for a referral.
You are looking out for your mum and doing your best for her, it might not be easy or nice doing it and when she’s settled in she could be happy at the home, assured she has 24/7 care and have some friends there.

I do feel for you - the reality is the NHS and SS will let you continue doing things even if you are at breaking point. I guess you are keeping a diary of what is going on?

I know it is somewhat extreme but is it worth seeing a solicitor and getting legal advice as surely the NHS has a duty of care not just to your mother but to YOU. I had to threaten this re my late father as I felt his Surgery was trying to make me sleepwalk into taking on more and more responsibilities. At the time, my husband had come out of hospital having had kidney issues - function had gone down to 7% and Sepsis and I could not care for 2 vicious old men who hated each other. It was a huge fight and I felt very very guilty. Yes, everything seems aimed very much at avoiding ‘deprivation of liberty’ for the caree with no thought of the infractstructure (and human cost) of caring for them. Like you, I basically wanted my father to go into a home, although he did not, as he would not let the carers in, was lying in bed and refusing to eat or take his medication . I got endless calls from Agency asking me to go round and help them persuade him to take his pills, but I just could not do this on a regular basis. Chasing a 79 year old round his flat to get him to take his pills was not something I was prepared to do twice daily. Also he would not get out of the shower when the carer did the evening visit. I got a call but had gone to bed so missed it.

It is very very hard and believe me, I found it hard to threaten legal action but it seemed the only way forward. I also said I was going to write to my MP. I wonder if the Advocacy Service is still working or has it been reduced due to Covid/Cutbacks.

I can only wish you all the best but YOU deserve quality of life too.

Thank you x

Thank you x

Do you think your Mum would agree to a couple of weeks of respite care in a care home? That would give you a break and allow you to breathe. I know a lady who had been caring for her sister who has dementia and the carer had to have a hip replacement. So, her sister had to go into a care home for respite and she liked the care home, so she is happy to stay there.

Brilliant idea. I didn’t think Mum would agree but, randomly and wonderfully, she agreed to a respite stay right in front of the GP (obviously forgot in 2 min and today might be a different story but it only matters what she told the GP).

So GP said he’d support a respite stay for the duration of my medical treatment in May (I can actually accept my operation date! After a year of having to turn it down on account of care). Local care home seems good (wait and see for real, I know), they have a place… and a minimum 4 week stay.

Thank you!

Great news. Make sure you have some time before your op on your own, to sort out your own arrangements and get some rest and some gentle exercise. You need to be fit for surgery. I’ve had 8 ops, put some of your favourite food in the freezer beforehand and get some books to read during recovery.