I have been reading the posts on this forum for a while and have found it so helpful I felt it was time to join in.
My husband is 52 and was diagnosed with frontotemporal dementia (specifically picks disease) last year. That was the worst day of my life. He was in hospital at the time being treated for what I thought was depression or some sort of mid life crisis. On one visit, his consultant called me in to his office and told me out of the blue that Peter had dementia. Showed me a brain scan, got me a cup of tea and left me alone with a box of tissues. Peter walked out of room saying he was late for dinner. How I drove home I will never know. Just writing about that day has started me shaking again.
Peter then spent 6 weeks in an assessment centre and has been at home since December. Must confess I am finding life very stressful. I have 2 children who are 14 and 9 and my overriding priority is to try and maintain some normality for them. Impossible really and they both know their Dad's diagnosis. My son (14) was really badly affected at first and refused to speak about it to anyone. Better now with family and a few trusted friends but he hasn't told any school friends etc. and hasn't had anyone round to our house for months. Breaks my heart to watch my 9 year old daughter caring for her Dad and telling him what to do especially as her loving care is no longer reciprocated. Complete role reversal. Why my children should lose their childhood like this is so b***** unfair. I work part time and will fight to maintain that for my sanity. All professionals we have had contact with seem to assume that I will give up work to care 24/7 but it isn't that easy. Have a huge mortgage which I somehow have to pay. Peter too young for a pension and he was made redundant last summer. Have taken legal advice over that as would seem made redundant when no longer performing his job well. We know why now but didn't back then. Dealing through solicitors to try and get agreement to a permanent health insurance claim he would have been entitled to if still employed. Waiting each day for news as it is critical for my financial future. Other option is sell house and release equity but been advised not to do that as will eventually all go on Peter's care and leave myself and children with nothing for future. What a mess.
Peter goes to day centre for 1 day a week and has crossroads in one morning. I manage to work for those times. Rest of time, just us. Neither of us have any family who live nearby. One of P's brothers takes him out every couple of weeks for a day which helps. His other brother can't handle the situation and hasn't spoken to us for months. His mother is 89 and has been so badly affected she took an overdose last week. My mother has early stages of vascular dementia and is being cared for by my sister.
Sorry this sounds so dismal but life is dismal much of the time. Not sure how we will get through but trying just to cope with one day at a time. Just typing this out helps enormously. I'm sure this forum will be a great help to me.
My husband is 52 and was diagnosed with frontotemporal dementia (specifically picks disease) last year. That was the worst day of my life. He was in hospital at the time being treated for what I thought was depression or some sort of mid life crisis. On one visit, his consultant called me in to his office and told me out of the blue that Peter had dementia. Showed me a brain scan, got me a cup of tea and left me alone with a box of tissues. Peter walked out of room saying he was late for dinner. How I drove home I will never know. Just writing about that day has started me shaking again.
Peter then spent 6 weeks in an assessment centre and has been at home since December. Must confess I am finding life very stressful. I have 2 children who are 14 and 9 and my overriding priority is to try and maintain some normality for them. Impossible really and they both know their Dad's diagnosis. My son (14) was really badly affected at first and refused to speak about it to anyone. Better now with family and a few trusted friends but he hasn't told any school friends etc. and hasn't had anyone round to our house for months. Breaks my heart to watch my 9 year old daughter caring for her Dad and telling him what to do especially as her loving care is no longer reciprocated. Complete role reversal. Why my children should lose their childhood like this is so b***** unfair. I work part time and will fight to maintain that for my sanity. All professionals we have had contact with seem to assume that I will give up work to care 24/7 but it isn't that easy. Have a huge mortgage which I somehow have to pay. Peter too young for a pension and he was made redundant last summer. Have taken legal advice over that as would seem made redundant when no longer performing his job well. We know why now but didn't back then. Dealing through solicitors to try and get agreement to a permanent health insurance claim he would have been entitled to if still employed. Waiting each day for news as it is critical for my financial future. Other option is sell house and release equity but been advised not to do that as will eventually all go on Peter's care and leave myself and children with nothing for future. What a mess.
Peter goes to day centre for 1 day a week and has crossroads in one morning. I manage to work for those times. Rest of time, just us. Neither of us have any family who live nearby. One of P's brothers takes him out every couple of weeks for a day which helps. His other brother can't handle the situation and hasn't spoken to us for months. His mother is 89 and has been so badly affected she took an overdose last week. My mother has early stages of vascular dementia and is being cared for by my sister.
Sorry this sounds so dismal but life is dismal much of the time. Not sure how we will get through but trying just to cope with one day at a time. Just typing this out helps enormously. I'm sure this forum will be a great help to me.
