Carers' needs

[sheepfield]

I'm in my local carers group and it's good to receive support from them.
I'm finding that other people, whether the cared for or professionals, seem to assume that carers are able to care regardless of their own needs.
My family member is becoming increasingly confused, frail and hard of hearing and seeing and I'd like to help them with whatever they ask or whatever becomes apparent that they need but I also have needs.
I have a diagnosis of anxiety but have also been investigated for ADHD and autism. Apparently I don't meet the diagnostic criteria for either but my family member's son was diagnosed with autism on a second opinion so I'm aware that the road to diagnosis is bumpy.
It's hard work being a carer anyway but perhaps more so when I also can't remember things as just one example! Well, the thought is that I don't pay attention all the time so things don't enter my brain in the first place and I often have gaps in my memory like when you're on autopilot driving and don't recall a journey. You can imagine that trying to juggle someone else's appointments, shopping etc is difficult when I find it hard to keep up with my own even with a diary and lists.
I'd like to apologise in advance in case I say something daft on the forum. I don't always engage brain before typing or understand the subtleties of what others have written.

 

[Grannie G]

I'd like to apologise in advance in case I say something daft on the forum. I don't always engage brain before typing or understand the subtleties of what others have written.

Don`t worry. We are all with you.

 

[Izzy]

No need for any apologies @sheepfield. I’m just glad you’ve found the forum and I know you’ll find understanding and support here.

 

[sheepfield]

Ah thank you, that's so kind. I'm glad that I've found this forum. I care for other people too but it's a different scenario with the confusion, memory issues and personality changes of dementia.

 

[Chizz]

Hi @sheepfield
Apart from some support groups, either in person or online by zoom or teams, there isn't help for carers.
In my area there is a charity dealing with living well, mindfulness etc and they have a whole programme of events, talks, coffee mornings for over 65's, exercises for seniors, etc. They are recommended by the memory clinic and the local authority social services.
Usually full time carers are invisible to society. The Local Authority Adult Social Services don't really know how many people in their area need support (not just dementia but autism, parkinsons, motor neurone, etc, etc - there are many conditions requiring care) and thus they don't know how many carers there are.
This is why carers often feel isolated, lonely and alone and many, many are!
The carers' most commonly requested need is respite provision, or groups for interaction. In my area respite provision is means tested.

 

[sheepfield]

I'm lucky that in my area there are a couple of in person groups for carers. My husband is autistic and it can be quite lonely at home as he's quite quiet. I'm also possibly autistic but I'm sometimes chattery! I'm in the mental health carers group so they're used to different brains.
I hadn't thought about applying for respite care, that would give us a break from each other but I'm not sure how my husband would feel about a solo holiday. Or we could both have a break from our family member with possible dementia. Visiting and fielding phone calls from professionals each day is quite overwhelming.

 

[sheepfield]

Just an update, I've been that busy with trying to facilitate phone calls and deal with near miss fire incidents that I haven't had chance to look into respite breaks. I guess that's the whole point of needing some respite!
The social worker says that there is no start date for social care so no end in sight for the dilemmas of food, hygiene and medication, making respite even more important.

 

[sheepfield]

Another update, my mother in law's social worker has given us details of the carers group in my mother in law's local area.
I've certainly found helplines more appropriate for me than groups of any kind whether online or in person.
I was advised by someone working with my mother in law to be more proactive! A bit difficult when I have trouble with many aspects of daily living myself.
But we can only do so much and you can't pour from an empty cup.
@Chizz I really hope that you receive the support that you need x

 

[Kevinl]

You can't pour from an empty cup, never heard that one before, but I so know what you mean, thank you for that. K

 

[sheepfield]

Also put on your own oxygen mask before helping someone else to apply theirs. Like in safety videos on aircraft.
My husband is having a week off work to replenish his cup, meanwhile I'll need to get my boundaries out to avoid struggling for oxygen with two people to run round after.