I apologise in advance for the length and waffley nature of this post (and if it’s in the wrong place) - I think it’s evidence of my state of mind.
My mum was diagnosed with mixed dementia in the summer of 2019. In those early days, she was independent, chose to give up driving to be safe and was involved in the decision in moving with me (her only immediate family) closer to local amenities. Luckily, we were advised by our conveyancing solicitor to arrange both the financial and welfare LPAs at that time. For nine months she was fine…then covid hit. Her cognitive stimulation therapy was cancelled, all the day centres and pop-in groups closed their doors, friends and our limited extended family couldn’t visit, I didn’t receive any carer ‘training’, and despite me being on furlough and home (alone) with her constantly, she began to decline rapidly.
During the summer/autumn of 2020, the local council completed a needs and financial assessment and despite needing care during my working day absence, concluded (incorrectly) Mum had deliberately deprived herself of assets by signing the house value over to me for our new home…which was chosen with her needs in mind - I challenged the decision without success. I have suffered from anxiety and depression for several years and found lockdown isolation particularly hard; a carer’s assessment concluded I needed assistance and respite as I was close to burnout…burnout is now a speck on the far side of a very distant horizon.
My old post was made redundant thanks to covid but I managed to find a very different post, with the same company. When my furlough ended and I returned to full-time work in December, I arranged two 45 minute private care visits a day (partly funded by Attendance Allowance) - more for welfare than anything else. Although Mum’s still capable of her personal care (mostly), she’s now incapable of organising her own affairs, housework or cooking, her appetite is poor to say the least, she doesn’t drink enough fluids, and she doesn’t leave the house alone. She’s not violent but she’s perpetually confused - lucid moments are few and far between; she asks for my dad (deceased 25 years) but not my brother (deceased 30 years) and the recently dead dog, frequently doesn’t recognise me (asking where her daughter is - I’m now an only child) but is occasionally in the belief her long-estranged sister is her daughter but accepting upon correction. Practically on a daily basis she’ll pack up her clothes and belongings under the belief she’s “going home” and becomes extremely frustrated and disbelieving when I try to tell her she is home. The Council have reassessed her needs, recognised further care is required, recommended 4 visits a day, but maintained the financial decision against us. It’s all well and good organising clocks to aid the memory and emergency call buttons but how is someone with dementia going to remember what that button is for or when to press it? Last weekend, Mum barricaded herself into her bedroom at night and I couldn’t gain access until she finally heard me calling her (she’s partially deaf now). She’d piled furniture (for 88 she’s very agile!), boxes and even a large stuffed toy against the door as “there isn’t a lock” and in the belief she wasn’t safe.
I’m juggling a relatively new full-time job (50 minute commute each way), caring for my mum and the house, and looking after my own mental health - even Mum recognised yesterday I’ve effectively got two full-time jobs. While on medication, I work through my anxiety by keeping busy and struggle to find my ‘off switch’ - I’ve collapsed 3 times with exhaustion.
So, after a VERY long narrative, how do you know when it’s time to look at residential care? I’ve asked the ‘professionals’ and they all say “you’ll know”…will I? How?!
Where do you turn when you’ve genuinely verbally and in writing begged the professionals for help and you’re turned down or don’t get a reply for weeks…or ever?
I’ve tried to broach the subject of care with Mum but she’s all about the money, quickly gets frustrated and confused and says we’ll talk about it later…when we’ll be talking about it for the first time.
With my mental health, everything is beyond my control, I’m trapped. I try to plan ahead but how can you when the rate of decline and prognosis are unknown?
I feel like the proverbial frog in cold water, slowly boiling to death as I’m unaware of the little changes, as I do more and more for Mum.
I’m worried if I make the decision to find residential care, will it be for Mum’s welfare or my own benefit? Both probably.
Mum only has about £15k in savings so that would only cover 4 months of residential care - then what? I feel like the Council expect me to sell the house but then I’ll be homeless.
As I said, I think my state of mind is evident.
Please, discuss, advise, relate.
Thanks in advance.