Caring for a spouse with frontotemporal dementia - Donna's Story.m4v

my name is Donna Dalzell until about six years ago I had a good life a husband who was extremely doting and devoted we had four children under the age of five so now have four 20-somethings and into 30s we had a good life we had our bumps like everybody does but I'm thinking if you asked our friends they would say hmm Donna and Donna have what it takes that was until about six years ago then things started to fall apart I had a husband who until six years ago was an athlete supreme he owned his own business he was a bank manager he was a carpenter he built us our cabin and all of a sudden things started going south he was painting our cabin painting the trim on our cabin and I was doing whatever and I came back in and he had painted the entire screen door one of those full ceiling-to-floor screen doors it is all painted I said to dawn I guess I should I just I couldn't believe what he had done so I said what did you do and he looked at me and he really didn't know that he had done anything wrong I said dawn it's a screen door breeze comes and goes comes and goes through the screen and he said well I was painting the trim and in those days he could still talk and I said but it's the screen and so he very calmly went he got a pen and he started poking holes where the hole should be in the screen I kept that door for about three years because Dawn was a capable good-looking man so anyone who sees him thinks he's a capable individual he's not he has frontal temporal dementia I didn't know what that was none of my friends knew what what but it was my own doctor didn't know what that was and at the age of 55 no one's expecting you to have dementia I was telling my doctor different things that Don was doing he was becoming verbally abusive and you could tell my doctor looked at me like I had a couple of heads because in the meeting with the doctor dot the hits they'd say Don how are you feeling today and Don would say great he still had inflection in his voice and the doctor is thinking something's wrong with Donna because Don is great because he just said he was great after two years of this after two years of painting the doors of bottoming out of vehicle as you're driving in it because he doesn't know how to slow down after eating off of people's plates after putting bones on other people's plates after urinating in public finally we come down to Saskatoon and see the rural and remote memory team because finally someone understood the something was wrong with my dawn when we came down here I had quite a list of things and I gave I know I think it was too tight pages to the doctors and I said maybe it's Alzheimer's maybe it's male menopause I thought maybe it's a thyroid issue I was going on and on and you could tell that the team after talking to us for 20 minutes so it was my husband myself and my daughter with a team of doctors you could tell after 20 minutes they darn well knew what it was but there was a whole day of testing to go through I'm still holding on to the thread that maybe it was something that could be treated we'd already gone for an MRI tumor was ruled out I was disappointed it wasn't a tumor because I thought at least with a tumor you could have surgery when the diagnosis came down that was FTD my world crashed because I've been given a death sentence to my husband my husband didn't know was a death sentence he was told he could no longer hunt he could no longer drive he could no longer be around grandchildren on his own he took it all in stride I am crying my daughter is crying he is saying well you had to tell me and I'll do what you say I need to do his world because Dawn's world is still fine didn't collapse like mine did this hideous disease took away my soulmate it took away my lover it took away our humor our meaningful way of life our retirement in place there is a childlike person a shell of the person he once was what do I do I always thought I was a strong individual and many of you who are living through something like this you know what we can only be so strong 18 months I cried cried I would get up in the morning and hate it absolutely hate it and so I would try to keep my husband in bed with me because I knew if I had him in bed my day couldn't go too far off kilter the minute he would get out of bed the day would shift sometimes it would shift so badly I would just take him right back to bed and we would try to watch movies the rest of the day our friends don't understand because he's are capable looking then like he's a good-looking man if he had lost a limb if he had any type of physical ailment people would have respected that and they would have treated him as if he had an unassigned ailment but because he doesn't have anything that's visible people still expect him to do what is socially correct he can't he doesn't know how to do it it was easier just to remove the two of us then to try to work through it and in retrospect when I look back two years before the diagnosis we have started removing ourselves from any type of social circle because of the excuses I had to keep coming up with I just kept on swearing at my husband saying could you just shape up and he'd say what what do you want me to do and I said be gone that's all I want I want you to be done he didn't know what be Don was because now that he's in the much later stages and he can't talk and he only plays with with childlike toys he thinks he's still Don he doesn't think there's anything wrong with him society expects us to do things a certain way well there isn't a certain way to do anything that has to do with frontal temporal dementia it is a beast of a disease it takes away your dignity it takes away your life so I felt I had to find something to give both Don and I meaning if you think about it when you're in a school you get 300 stimuli x' daily anyone in my husband's situation gets about 40 stimuli daily that's reducing stimuli by eighty seven percent eighty seven percent what would happen if my stimuli was reduced by eighty seven percent the mind I have would regress so what I learned to do is to make sure Don was engaged but but engaged with things he could be be positive with and feel and find success with and that was with games and toys so that has been my salvation figuring out how to deal with this boy type man so that he can feel good about what he's doing and I can teach others how to make sure they feel good now I live with my my childlike man and as Winston Churchill says kites rise against the wind not with it all of us who have loved ones who suffer from any type of dementia there's lots of resistance because these people with dementia often look great we have to fight and make sure they get the care they need because dementia is going to dwarf all other illnesses if you can get it when you're 40 if you can get it when you're 50 you get it when you're 80 it's a it's an illness none of us want our loved ones to get so just everyone help us fight you

Channel: The Canadian Centre for Rural & Ag Health

Views: 107,533

Keywords: frontotemporal, dementia, frontal, temporal, fronto-temporal, spouse, partner, FTD, FT, lobe, syndrome, caregiving, caring, carer, Alzheimer, RRMC, Rural, Remote, Memory, Clinic, RUH, Royal, University, Hospital, Saskatoon, of, Saskatchewan

Id: AOBPNy7eQcY

Length: 9min 27sec (567 seconds)

Published: Thu May 03 2012