Hi everyone, I’m new to posting on the forum albeit not new to reading lots of your posts which have been so valuable in providing reassurance that we are not the only family facing the challenges of living with Parkinson’s Disease.
My dad was diagnosed in 2016 and for many years his PD did not impact his life too much. We noticed changes in his speech and his stance but he remained living his life without too much difference. In the past couple of years he started to deteriorate, we had to tell him to stop driving after a couple of near misses and noticed changes in his memory and ability to feed himself. This year (2025) we received the dementia diagnosis we knew was coming giving. He has vivid hallucinations and often thinks he’s somewhere he isn’t. Dad had two falls in the summer of 2024 resulting in lengthy hospital stays with broken ribs and hip respectively. After the falls his mobility took a huge hit and he’s been living downstairs with a hospital bed and commode since Aug 2024.
The trouble is my mum is his full time carer. She’s 87 with health issues of her own. We have to have overnight waking care for dad because he’s up in the night so many times to go to the toilet (overactive bladder) and he cannot be left alone. My mum has very poor hearing and cannot hear him climbing the rail of the bed in the night and in the past has woken to find he’d ‘furniture walked’ his way into the kitchen at 2am looking for the toilet. He has to be helped on and off the commode and put back to bed in the hope that he might sleep a bit longer. We are privately funding 4 x ‘overnight waking care’ but due it being so expensive we cannot fund the full 7 nights of the week. I fill the remaining 3 nights as it’s just too much for my mum now. It’s exhausting! I have a full time job and a family of my own along with dealing with all of the support they need in terms of getting to appointments, cleaning, paying bills, dealing with social services etc. as well as being with them at tea time everyday to help dad eat and get him ready for bed, meds etc.
We’ve just had our needs assessment with our local authority and the social worker suggested a live-in carer might be the type of support that mum needs to help care for dad. This is the problem - my mum is really pushing back on having someone living in her home full time. I completely understand her hesitation but feel that hopefully in time, she’ll come to realise that having someone with them full time has had a positive impact on her life rather than negative. We tried dad in care home for some respite earlier in the year but found he deteriorated so quickly in so many aspects that we brought him home. In an ideal world we’d like him to go to residential care where they can provide the same level of care for him that we do at home - unfortunately while care homes do a great job, they just cannot provide that.
I was wondering if anyone has come across the same situation with a parent resisting full time care at home or if anyone has any experience of a having a live-in carer that they’d be happy to share?
Many thanks
