early onset
Hi Jackie - and Megan,
Yes, I'm another one, my husband is 56 now and was diagnosed in 2005 and I see now it had been coming on for quite a while. Probably when he was about 51 or 52, you think back and realize something they did was probably this thing starting slowly but surely. Steve and I never really got on that well, he was a man's man, liked to be out with mates and doing his own thing, we had some very bad times actually but now, what a waste of time and upset that was.
He gradually got worse until one night in August last year he had a very 'bad turn' and my friend and neighbour who is a psychiatric nurse rang a locum who gave him a sedative and that was it really, he just got worse from then on. He went into hospital to an assessment ward for a minimum of 4 weeks in September last year and stayed there for 6 months and then in March this year he went into a care home. He needs more care than I can give him. It was actually taken out of my hands, the psychiatrist and whoever else make these decisions told me he would not be coming home. He is in a fabulous home 2 miles from our house and I don't pay a penny myself as we don't have any savings, he gets Incapacity Benefit which he's been getting for 5 years as he had to stop work because he has rheumatoid arthritis. apparently he gets this for a year after leaving our home so by September this year, that wil either be reduced or stop, as yet I'm not sure. I don't have a lot of faith in the DSS, they tend to give you money you shouldn't have, even when you ring three times and tell them your situation and tell them you are sure you're not entitled to this money!!
It's extremely sad that your boys are so young. Our kids are all in their 30's. The grandchildren don't understand of course as their ages range from 9 to 2 but I don't take them to see Steve, he doesn't know who they are now. He doesn't know anyone except me. We moved away from our family unfortunately before he was diagnosed so I am on my own. I don't even have many friends where we are now. Like you, I almost moved us back to where we used to live to be near the kids but it all fell through at the last minute and I was very glad it did in the end as Steve would certainly have been very confused and he was in the system here and everyone here has been wonderful. The Alzheimer's Society, the staff at the hospital and the care home staff too.
Steve was put on the lowest dose of Exelon and then I was told it wasn't working so he was put on a higher dose but that didn't work either so he's not on any meds for the dementia now at all. He has to be sedated and have anti-depressants. He's on quite a lot of those.
I'm suffering with laryngitis at the moment and feel 'dead rough' so how I'd manage with no help from friends or family if Steve were still at home, I don't know.
No-one can tell you how things will progress unfortunately, every single person is different. Do you keep a diary of how he is? I did and a lot of people on TP do and it's a very helpful thing to have. I hated to discuss what things Steve had said or done in front of him with the psychiatrist as he was very embarrassed when he was still aware so I used to copy from the diary and send it to the psychiatrist a week or so before his appointment and then he could read it without me having to talk about Steve in front of him.
Hope we have helped here.
Take care
Sue