Mum is exhausted. I am exhausted, and I’ve only been back to work for 2.5 weeks. Caring for someone with dementia is deeply draining and thankless. Combine the grey weather, the fact I’m contracting away from home 2-3 nights a week and that my project isn’t going so great, I’m feeling a bit overwhelmed.
Last Friday my dad had an assessment at a local dementia care home. My mum and I had gone to visit the week before. It was pretty run down and sad, a lot of people were at the latter stages of their dementia staring at the wall, catatonic; others were locked away reliving some past experience, the place was shabby, although the carers and staff were all lovely.
No one there seemed like my dad who is able to interact, eat, dress and go to the bathroom himself, who understands that he’s an old man. My dad, who can’t remember what he ate, or if he ate, or what day or year it is. My dad, who gets confused and very angry; who has bad mood swings, gregarious and engaging one minute and vitriolic and hateful the next. My dad, who tips from flirting and joking into deeply inappropriate sexual language without understanding that what he’s said is totally wrong. My dad, whose body clock is out of whack and who is up every night til 3am then sleeps all morning getting up for breakfast at 2pm. My dad, who still knows all the answers to the quiz shows, who loves to read his New Scientist magazine and recite his poetry.
We took dad for an assessment because mum needs a break, we all need a break. Mum is going to go home to the country of her birth for 7 weeks in February. She’s aged so much in the last year since she moved in. As dad’s dementia’s got worse, she’s visibly shrunk. We are going too for a fortnight. I’ve been in touch with social services since last year to start to arrange respite care for the brief time when we are all away.
I guess you can probably tell from the intro to this post that the assessment day did not go well. When I picked dad up and asked how he felt, he said he was ‘middling to suicidal’, and he asked why I left him in that hell hole all day. I felt awful.
By the time I got home he’d forgotten the detail of the day and said he’d be up for going as it was for less than a fortnight, and it would allow mum a chance to really switch off knowing he was safe. So far so good. I rationalised that even though I didn’t think the place was right for him, that he would be cared for and safe.
Yesterday I got a call to say that the placement had been declined by the care home. Today the social worker rang back to tell me it was because of dad’s inappropriate sexual language which upset the residents and made the care staff feel uncomfortable. I’m annoyed.
I’m annoyed at my dad, even though I know it’s not his fault. Even though I know that lack of control, lack of inhibition, inappropriate behaviours and language are all part of the Frontotemporal dementia that he’s been diagnosed with.
I’m annoyed at the care home. It is a dementia specialist unit. Shouldn’t they be able to support someone exhibiting symptoms of dementia?
Not quite sure what solution will find us, but I’m hoping that one does because mum and I both really need a break.