Awful times (post caring for Parkinsons disease family)

Possibly a rant… who knows… but it damn well sucks.

I lost a lot of my child and teenage years caring for 2 disabled family members in the same household, one of which was my mother. Both had early onset Parkinsons disease (one diagnosed pre 30 years old, the other diagnosed around 34). Many of you will understand what that was like ranging from falls, hallucinations to even suicidal and anger outbursts.

An elderly relative lived there as well but actually nobody ever supported me. I found it tough, nobody listened or cared, in fact not once did anyone actually ask or try to see how I was coping at any point of my caring duties. As it happened, aside from the obvious of finding it hard being a carer, I have Aspergers and yet it was constantly catch 22. Family were too ill to support me or provide evidence to the doctors and doctors would just play it down and fob me off. Nobody ever seemed to care.

At home abuse was going on. To say the least, my elderly relative was getting annoyed at times and would hit my mother. Nobody cared or listened, I just had to deal with it all. I left my job as my own health problems and caring duties dragged me down. Yet again, doctors didn’t want to know forcing me into claiming carers allowance just to have enough money to pay the bills. I eventually moved out of the family home as the abuse was too much for me.

The past 5 years since the death of mum (the other family member died before that point)…

Mum died and nothing… No support… Zilch. Just work to do arranging the funeral and dealing with the estate. Oh but I did have a “nice” letter saying my carers allowance was of course stopped. The NHS didn’t want to know and still I was living with Aspergers completely undiagnosed and unsupported. I went through years of hell. Really complex bereavement issues, PTSD and of course Aspergers struggles. No help, nothing. I even drank and gambled lots as I couldn’t cope.

Ultimately what has happened as a result of no NHS support is I went years living through a hell even becoming and being suicidal. I ended up on disability benefits (ESA Support group) and the annoying thing was ESA assessors said it’s clear I need more support and yet when I went to doctors to get said support, doctors played it all down and I never got anywhere.

I knew I needed to move but as I was in social housing, the only way (apart from homeswapper…waste of time) was to have a supporting letter from a GP… They refused. What happened was I remained where I was, living miserably for years, totally unsupported and then suddenly neighbours from hell became new tenants next door. Man, that was a living hell. Abuse (including verbal) all the time, litter dumped everywhere, I was back to suicidal mode bigtime. Again nobody cared, the police did nothing, the housing association did nothing. I had to leave. Funny thing is, as I was in the final days there, the NHS admitted I should have had more support all along and that mistakes had been made (great, too little, too late).

My only option was to move back to the home of that elderly, abuser relative. Things soon boiled to a head with her abuse though and when I tried to open up to her sister about it, her sister refused to accept it was true and instead forced me to leave. Alas, that made me completely homeless. Having to lodge with an old friend, sofa surfing and it’s been that way since.

Now, it’s a tricky one. Homeless through no fault of my own for nearly a year. A poor credit report amongst other reasons means I can’t rent privately. No hope of being back on the housing association list as I earn too much self employed now. The absolute only option is my friend is looking at buying a home for me to move into, I cover the mortgage payments and it will eventually be mine…but… The property market is horrendous, We’ve been trying for almost a year now and it’s just let down after let down.

Overall I’m numb. I drink too much these days, I’m often suicidal (no, Samaritans or the NHS wont help, been there, tried that over and over. We even had the ambulance staff out the other week as I was so suicidal and they agreed my situation is a very tough one with no real way out apart from moving).

I spent some 20 years caring for disabled family members. My childhood, teens, right the way up until I was 30 years old. I’ve seen some horrible stuff only us carers and former carers could ever imagine. I’m sorry if it sounds I overly criticise the NHS services but they’ve been utterly useless. At the very least, it baffles me how they knew I was a child in the same home as 2 people with early onset Parkinson’s disease and yet they didn’t even care to see or ask how I was doing. It’s not rocket science really is it?

I wont have anything to do with them anymore about any issue as hand on heart, I don’t have any less trust towards anyone or anything than the NHS services after how badly they’ve let me down.

Hi Jake,

I’m sorry to read of your experiences.

You might find Childhood abuse - Victim Support