"My mum has FTD dementia and since her diagnosis around a year and a half ago it has aggressively accelerated.
She’s now at the stage where she mostly makes noises, rather than able to form any words and sentences.
As she lived alone there has had to have been some big life changes. I typically travel the world as a cameraman (something that after 6 years of ultra hard graft is only now starting to work out for me) but I am now a full live in carer.
I was primarily surprised at how people distance themselves after a diagnosis. Friends, gone, hers and mine. I keep her social as possible with groups and activities but it’s not a replacement from her life long friends. Even family vanish. People that would visit weekly/monthly have not been seen all year.
I’m finding after a solid year of 24/7 care that I realise I’m now totally isolated. Career effectively abandoned. Plans for starting a life with a partner, gone. No one to actually talk to about this. So hear I am. Is this common? How did you over come?
After admitting to the doctor that I felt like I was without hope, I have been put on some sort of happy pills. So far they seem to be making everything worse.
Is this my life now?
I’ve never felt so mentally unwell/exhausted in my life.
I HATE you dementia."
My mum is forgetting things, getting weirdly panicky, saying quite odd things when getting out of bed in the middle of the night, constantly asking the same questions again and again. It’s deteriorated quite rapidly, but all is thankfully quiet on the Western front at the moment. Asking my sibling for some help recently I got accused of trying to live with my foreign wife over in her country and dumping the situation on my sibling, which made me very angry indeed and I have had to simply forgive or I would boil over into saying some really nasty things quite aggressively. On the contrary, my wife is planning to come over here and help me care for my mum.
Friends are going to disappear. I mean, be honest, if you had a mate who was going through something similar, would you want to involve yourself too closely, in case you couldn’t really help and then had to walk away? I can’t answer that question myself and I’m a practising Christian who believes in helping others and being truly charitable, where possible. Forgive and forget. People have lives too, and families and other interests. Harsh, I know, but that’s life. It does indeed suck sometimes.
I’m right in the middle of trying to start a new life with my new wife, irrespective of the circumstances. This won’t be easy. We plan to work in the UK, buy some property and land in my wife’s country, and I hope to be a published author because I have been writing for 25 years, thwarted by life and long term ill health of my own. Not easy. But there is always a way. I’m in my 50s my mum in her 80s.
Career? It’s on hold. No one knows what tomorrow may bring. You’re 37 not 67, after all. But, still, it’s hard to see all that hard work, contacts, connections and possible lucrative opportunities dissipate. As for a partner, I found my exquisitely beautiful and sexy and virtuous wife on a Christian online dating site, when I saw her picture and fell instantly in love. Nothing is written, old sport, we do indeed write our own story even if the pen sometimes runs out of ink, the pages get smudged and other things get in the way. But you carry on writing your story when you can. As a Christian, I pray and have been praying fervently. Over in my wife’s essentially third world country, although there are places of incredible opulence and wealth, the capital city and the skyscrapers there look like something out of a Sci Fi movie, and at street level the poorest come out around 3 or 4 am to sell cheap refreshments to the low paid workers, just to make a living. Work for a day, live for a day. The poor subsist. There’s no welfare, you pay even for public hospitals, wages are generally low even good jobs compared to the West, yet internet, water, electricity and many consumer goods and decent food and restaurants are little different from our prices. Even the affluent middle class have less than some of the ‘poor’ here. Count your blessings.
You do need to focus, seek and then keep asking for help. A breakthrough will come, They are starting to come for me now. I wrote a reply to Cerinthe, too. I’m not the font of all wisdom, no the great sage of all the ages, just an ordinary working class bloke from NW England. But your life is not over, mate. It may feel like it. But it isn’t.
As an aside, if you wish to private message me, and contact by WhatsApp, feel free to do so, but I will not be offended in any way if you don’t or can’t be bothered nor even if you don’t reply to this post, I just hope that I’ve given you some food for thought.
God bless you.
