Mum, 59 with early onset Alzheimer’s Disease - experience

[CarM]

I'm in a similar situation . My mom was diagnosed at 54 . I had to move in qith my mom in April 2019 and move part time. I was 33 at the time. Now I'm 35 and also feel trapped indoors. If i leave it is eother with her or find a carer. I'm entitled to social worker 2 a week for a couple of hours but it is taking so long to arrange it. Started in June still no progress.

What i feel is the best at this point in my life is to find a reliable carer with whom i can leave my mom. Haven't had respite in more than a year so looking for such a person at the moment with whom i can leave mom at home for 2 weeks

Hi Nadya, I'm so sorry you're going through the same thing. It is incredibly depressing, especially when you see what seems to be everyone else enjoying their lives and freedom.

So it sounds like you have applied for adult social care via your local authority, you have had the care and carer needs assessment, and they have decided that your mum is entitled to 4 hours a week, 2 hours for 2 days a week home care... in June? If that's the case, that is way too long between the decision and the start of visits by carers. I would email everyone related and explain everything and find out when the care package will begin. I would be calling your local authority every day for a progress update. Also, it sounds like you need to ask for more home care to give you more of a break.
Hopefully when the care package starts, you will meet a carer you trust with your mum so you can take a proper break. Otherwise, you have the option to change care agencies or if you can afford it hire a private dementia carer (although not ideal for 2 weeks).
I submitted a complaint to my LA adult social services and my local MP. My MP's office really escalated my case so that might be worth thinking about.
I know it can be difficult asking for help but if there are any family members or friends that can take care of your mum for half a day at least, it will make a difference.
It makes me so sad to hear carers going through this when we are the ones saving the government tons of money and resources by putting our lives on hold to ensure our loved one is cared for properly.
I'm here if you need to chat. I really understand what you must be going through x

 

[CarM]

Same here. I'm entitled to social worker but its taking so long to arrange. I'm mentally exausted too to go through all of the hassle. So what I'm doing at the moment is taking extra working hours / arrange some side hustle (as thanks to corona i work online now from home it should be easier). And just arrange private paid good carer to come look after mom. And then when i have a little break i will have strength of going through the long bureaucracy of arranging the free social worker visits..

It's frustrating because you need a social worker to organise the respite most of the time. It should really take one call or email and then a month for a social worker. For me it took 6 months for a new social worker.
I'm also grateful for home working now due to the pandemic, it's made things so much more easier. I would highly suggest looking into making a complaint and seeing if you could claim compensation, as you shouldn't have to paid for carers if you're entitled to free carers. I would keep a record of the amount you spend on private carers.
It really is exhausting mentally and emotionally. I keep hanging on to the fact that it won't be like this for the rest of my life. At some point, I won't have this huge responsibility and stress. x

 

[Franz]

Hi @CarM - sorry to hear about this. Sounds very familiar. I looked after mum when I was aged 26-29. Tried juggling jobs and education too and it was so tough. FTD is so severe and symptoms are so unpredictable that it made everything so tough.

I'm 36 now, mum passed away in 2013. I found being a carer so unrelatable - even now, close friends have no idea what I went through. this huge thing happened to me and my family and it's hard to get it across, I mostly end up not talking about it and feeling cut off. That's why I joined this forum, hoping to meet some people who understand my experience.

Anyway, here if you want to talk or chat. I live in London too.

 

[Shedrech]

just to offer a warm welcome to DTP @Franz
whatever you want to chat over, here's a place where members do understand