New here, found this last night while I was lying awake with my head full of things that I need to do. 31 years as a carer to a physically disabled son with autism. Also have 2 other ‘children’, 33 and 26 with disabilities. Feeling very overwhelmed. When my son was born with his disabilty which was not picked up prior to birth, I know I grieved for the life i was losing. Now i am heading towards my 60’s and my hubby is already there, I think im grieving again for the quiet retirement I was dreaming of. Instead we are full time carers to 3 adults still living with us. I probably sound selfish but really struggling at the moment. I work full time and love my job, i think its the only part of my life i feel i have control over. Anyways. Happy morning to you all, you are all warriors in your own right.
@Leytonlass You are most certainly not selfish! Caring for 3 adults and working full time would exhaust the strongest person! Welcome to the Forum. Do you get any outside help? Is it worth contacting your local Support for Carers’ and see what is available locally? Can you delegate tasks? Things like online shopping for example or a cleaner? As you get older are you still physically able to do the caring? Do you want to? What about YOUR life and your health?
Hopefully others will be along with better advice. I care for my non medically compliant 85 year old husband and have been doing so officially since Jan 2013 but unofficially a couple of years prior to this. I can totally understand the exhaustion and yes resentment and these are totally ‘normal’ emotions. And I only care for one person not 3.
It’s time to make arrangements for your children when you can no longer care for them. What support do they have when you are at work? Do they have any time away from home? I cried buckets when my son moved into boarding at his school at the insistence of my GP, when I was very ill, but in the long run it worked out very well. School was only 14 miles away and he came home a lot, but I had a break during the week. 30 years on he made amazing progress and now lives in a privately rented flat with carer support. When I was 52 I had major cancer surgery, with various tubes coming out of me, and a very uncertain future, I was so glad he had his own life. On the other hand our local paper once had details of a woman with Down’s Syndrome running up and down her road trying to get help as she “couldn’t wake mummy up”. I knew immediately who it was. The parents first asked Social Services what would happen to her when they could no longer care for her, 40 years earlier.
@Leytonlass, you are most definitely not selfish. There is nothing wrong with still wanting a life of your own, however much you love those you care for. I used to care for two people and work full time, now it’s just one person; but it is exhausting. Between work and caring you don’t get a minute to yourself, and it’s natural to grieve for the life you could have had. Never apologise for being human! x
@Leytonlass No, you’re not selfish. But you’re overworked!
What’s really urgent for you is to sort out future arrangements for your three adult children. We did this when our son was 25. It’s just as well we did because four years later my wife had a spinal cord injury that left her using a wheelchair, at least outside the house. She can potter a bit around the house, but not consistently. If I’d had that situation alongside the caring for our youngest son, I’d have been in hospital myself.
Age brings infirmity, and carers are more susceptible to almost everything going. Truly. We’re twice as likely to have depression, diabetes, heart problems and high blood pressure, to name a few. The longer you care for, the more likely this is.
Your adult children deserve to have as independent a life as possible, and you deserve the retirement you crave - but you have to argue the case, or social services will just let you get on with it until things go horribly wrong.