Hello lovely fellow carers. I hope your today hasn’t been too fraught.
Mum has dementia. It’s mid-stage so she’s living independently in sheltered accommodation. She finds her way around and manages basic self care. She is forgetful and can get very confused. We try to turn off the dangerous things like oven and she gets food at the retirement canteen so no need to try to cook as she doesn’t manage hot things. The most difficult thing is her intruder delusions and paranoia and anxiety. Pre-dementia she was already suffering from lifelong depression and body dysmorphia and attachment issues.
I’ve read a million things on how to handle these. I don’t think I always do well but I can talk Mum round. Some days are fine but other days, like today, are very not fine. I am unable to return to the office because I never know when I’m going to get the call. The calls happen often. More and more often.
I have spoken to the GP and memory unit. They say her delusions aren’t that much and I should be able to handle them. I have spoken to one private care agency and they say I should be able to handle them. They offered hour-slots for care with caveats that Mum’s pre-existing mental health problems meant they couldn’t just give companionship slots. Anyhow, they never got back to me.
She does need stimulation and I have a local volunteer taking her to tea at church on Thursdays and a music therapist to do singing on Fridays. I’m on call regardless and there each evening, if not during the daytime too.
The thing about people popping in is that, from experience, they tend to exacerbate the problem. People are genuinely coming in and out and that exacerbates Mum’s imaginings when they’ve gone as past and present meld. Her delusions and anxieties are not predictable.
She loves company and visitors staying. When they’re there I can tell how happy she is. Trusted visitors who I can ask “How were things really?” report the same. If they pop out (and of course they are encouraged to take breathers!), her anxiety returns and I get a call within about half an hour.
Thing is, she declares she hates anyone staying. So when another private care agency lady came to ask about a live-in to give me some respite when recovering from a medical procedure, Mum went nuts. I understand Mum doesn’t know she needs care and feels it’s a terrible imposition on her to have someone around because she’s fine and why did the care lady think she was so bad, she felt that it ought to be me being there. (In the end my mother-in-law, bless her, stayed with Mum for a week so I didn’t have to refuse my medical treatment; but I can’t do that all the time).
Result was the care agency said that Mum didn’t want care so couldn’t give it. They said that I should be able to reassure Mum over a video call. They also worried about dealing with Mum’s mental health. I know it’s a genuine problem - I wouldn’t want a paid carer to be in a bad position.
Doctor, care agency, memory unit all say that Mum is still very capable and doing well. I know she’s still got a lot of capability. And I do know how bad it can get . I’m not naive. I’ve been through this with Dad already (OK via a brain tumour but he had a very similar trajectory to dementia, but drawn out over 17 painful years).
I have read every website about being a carer that I can find. I’ve done courses. They all give advice on doing the caring better and say “take breaks because it’s important” and “look after yourself”. There are pages of advice on caring for a difficult parent who’s been abusive in the past - it’s all about coping, never delegating or getting help.
I actually have time I could use for myself but can’t plan any of it because I’m always braced for the next emergency. There’s no point planning a break when the whole time you’re as tense as anything and can’t enjoy it. Brace brace brace! That’s how I live. It’s the overwhelming uncertainty of not knowing if there will be an emergency next minute, it’s not being able to commit to my job properly, it’s never being able to go anywhere further than the post-box (forget the office), it’s being unable to finish a conversation with a friend on the phone let alone meet them, it’s not being able to commit to any activities even online, it’s being a terrible wife to a wonderful man and denying him children because I have to be there for Mum.
But this isn’t all about me. I know the main person in this has to be the person needing care. And that is right and proper. But Mum is suffering too from all the effects that come with her ailments.
[1] But is Mum eligible for help? Am I eligible for help? At what point does it become OK to need help?
From talking to care agencies - who I was prepared to pay a lot of money - we are not eligible. (I am really fortunate that paying for care is not the obstacle for me as my late father left Mum enough)
[2] If I am not eligible for help, what should I do?
I know Mum’s secure when I’m around. My husband is a wonderful person but knows that getting her to move in with us would be a nightmare and horror show - so that’s not an option. The remaining course is me leaving and moving in with Mum. I’d lose him, the one person in my life who gives me the courage to face the day. But Mum isn’t coping and nobody professional believes me.
