New here

[Nykola _2205]

Hi everyone
I am not really sure if i am a carer ….. or if as a parent I can’t accept that i am , as parents look after their children so how can i be a carer ?My adult child has complex health needs but also lives happily and independently with their beautiful family. However we support with multiple hospital visits and treatments , childmind when they are frequently unwell, help with housework, cooking and family life , advocate with medical teams , have done too many to count sitting by hospital beds all night , and do whatever it takes along with their phenomenal partner so that they can live independently and with dignity . i feel very alone at times as i sometimes think our life feels like a strange parallel universe so i am looking forward to connecting with anyone that gets it …. It would be amazing to know there were other people in the same boat …. Even if it is not necessarily a boat I would want anyone to be in ! Hope to hear from someone
Best wishes and kindness to you all and thankyou for reading
Nykola

[Charles_2112]

Hi Nykola - welcome!

If you're doing all the things you do for your adult child, I don't think there's really any doubt that you're a carer. It's true that "parent" covers a multitude of areas, but "carer" is for the extras. I have a son with autism who's now 37, and although he lives in his own place with care staff, my wife and I still support him with paperwork, etc. It's my wife who organises his finances, buys his equipment (new freezer coming soon, the old one is falling apart from heavy use), I sort out his cameras, his brother (also on the spectrum) sorts out his TV/computer tech. Other stuff we do as necessary. So we still provide care - and we cover for when his staff can't. Doesn't happen often, but it was a problem during covid.

I love the "parallel universe" description, but then I'm a big sci-fi fan...so I really get where you're coming from!

[bowlingbun]

I've thought for years I live in a parallel world. A disabled child is a life sentence for the whole family. The theory and practice of supported living are a million miles apart. There is no escape. My health is in ruins yet still I'm left to do so much for nothing, whilst the care agency are paid £15 an hour for staff to do very little!

[Nykola _2205]

Hi both

Thankyou for your replies , I hope you are both ok today and plodding along as best you can , I cannot tell you how amazing it was to hear from others who are living in my world . I think for me perhaps the most difficult thing is that sense of ‘being on call’ all the time . Even when my child is well I feel like i waste the break as i am always just waiting for the phone to ring with the next crisis . Any tips ?
I hope your day is peaceful today
Best wishes Nykola

[Charles_2112]

I can only suggest that you start planning for when you're not there to sort it. Talk it over with the family and start to look at other ways to get the result everyone needs. Best to try it out while you're still able to fill the gaps, rather than wait for the inevitable time when you can't do it any more.

And that will help to get you a bit of a break.

The other suggestion is: set your mobile phone so it won't ring unless someone tries more than once. Apparently iPhones do this: my eldest son has one and it's been great, except for the fact that my Mum, who has dementia, has forgotten how to find phone numbers and so goes straight to her call history, where my eldest can be found. So she rings the necessary few times in a few minutes and gets put through. If you can do that, and get your family used to the idea that you will only take calls in emergencies during certain hours, it might help them to recognise when they're being unreasonable.

[Melly1]

Hi Nykola,

Welcome to the forum. It took me many years to recognise that I was both a parent and also a carer to S. What we do is over and beyond what an ordinary parent does for their child.

It sounds like you have done an amazing job as your adult child lives independently and has a family of their own. I agree with Charles about making them as self sufficient as possible in preparation for the future. A good place to start would be to help them think about routine support and keep you initially for the unplanned events.

Melly1

[bowlingbun]

You have to be firm with yourself, and leave the country without email access, just a phone that one person has the number for in case of really dire emergency.
I go to Crete for two weeks every year, staying in a hotel for single travellers only.
Here, I learned to live and laugh again, I found that the "old" me who I thought was gone forever was actually alive and well, just wanted to be let out of the box. The "me" that wears dresses and make up"!!
I sent eldest son an email, saying I was having fun, been drinking and dancing in the small hours.
His reply was simple "Is this from my mum??"
I have made a new group of friends, after two weeks walking, swimming, laughing and eating our way round western Crete for 2 weeks I come home feeling ten years younger.
I stopped having email access after one holiday was ruined my a member of care staff who sent me a total of five emails about M's lawn more cable, for goodness sake. In the end I forwarded them to Social Services and told them to get this man off my back, I was supposed to be getting away from it all!

[ontheverge]

Hi Nykola. I'm "back to front" of you. Not children but older siblings. A total of 3 who have mental health issues which seems to have just dropped on to me without choice. I try to be best sibling I can be but at times, it gets too much for me. I'm still suffering from COVID and have my own issues to deal with which no one seems to ever show any interest in.

People at work keep telling me I should claim carers allowance but I always say no - surely a son and a brother should try and help out when he can.