I find it hard coming on here as it all seems so depressing and I cry when I read some of the posts. I need to be in control as I work and my partner has a disability so if I lose it everything breaks down. I just need to keep putting one foot in front of the other...
Thanks to the lovely people who took time to respond to my post. It does help to know that others understand my pain. I just need to find a better way of coping with it...
x
Jasmine Tea, so sorry for your dreadful situation, try to take comfort for the small glimmers of brightness that sometimes happen in a look or word from your Mum. She is still "in there" and these moments are precious.
My dear Dad died a year ago from Vascular Dementia, and up to the end we had some lovely moments in amongst the horror and cruelty of this truly wicked disease. He was so bad in the end that he could only crawl around the house on all fours as his balance was poor. Sometimes he was aggressive, especially if he was stressed, so we tried hard to keep everything calm around him. He just loved cornettos!
We kept him at home and were lucky to have a live-in carer, who was amazingly patient and kind. We also had my Mum living at home too, she'd suffered a serious stroke and could just about get about with a stick. She needed all help with personal care, like my Dad. I was very lucky to have a brother who took early retirement to drive them when Dad's dementia progressed, so he was there most days helping the carer. I'm a TA in a school, and had 2 teenage kids, so when I came home from work, my brother went home and I was "on duty" to help out at Mum and Dads! we had midnight calls from their house, my Dad called emergency services, including fire engines so many times ! We eventually had a lock fitted to the phone to stop him.
We had a stair lift in just before Mum's stroke, so that was invaluable, and we claimed all possible benefits to pay the carer. No help came from any charity, but we were determined to keep them at home, and eventually nearly all their savings were used up.
For about 4 years we kept up our vigils, and found lots of events funny like when my Dad,unbeknown to us, ordered a lorry load of tea bags, or when he'd come into the room wearing three shirts and two ties! or six watches, all showing different times, up one arm! Or when my Mum, after losing so much weight, entered the room and sneezed and her skirt fell straight to the floor!
My Dad lost his fight, at home after only being in bed for a couple of days, after 11 long years of torment for him, initially, and then for us as his adoring kids. My poor Mum's heart was broken and she only survived a month after spending a peaceful Christmas with all those who loved her.
After telling you all this, I'm sure you can see, it's not all hell, but a lot of it is. The price we pay for loving them so, is the terrible grief when they leave you. The thing is if you try to do your best, that's all you can do. You cannot perform miracles, we got angry with everyone when no-one seemed willing to help us, and so many times we cried for the pitiful way they spent their last years.
But, and this is a big BUT, they were always surrounded by us, they knew we'd do our best for them because in our minds, they'd been brilliant parents to us and it was pay back time. We tried to do everything we could, so we don't feel guilty now.
Now I feel relief every day, like the world has been lifted from my shoulders, It's taken a year to feel like this,but I have my life back, and I know they would want me to feel that way.
Your time will come, just cope as best you can and try to get as much help you can. Make a noise so that you get what help you deserve.
Good luck xx
