that’s right. by march, any support that we would have had went away. at the time, we were living in a small town, 30 minutes outside of calgary, and there was no support available, not even social workers who could come to see us, let alone respite. for the first two years, i was pretty well on my own. but last summer, when we moved back to calgary, we had more support than we knew what to do with.
how did claude react to the diagnosis?
perhaps i was in denial, but i didn’t want to talk to him about it. i didn’t want him to feel the heavy emotional burden that comes from having to process something like that. he thought that he would still continue to work, so i don’t know how much he was aware of how the diagnosis would impact him. dementia did make him feel more vulnerable and oftentimes, he would follow me around the house. my husband had always been assertive, short-tempered and would never back down from a fight. unlike the expected progression of frontotemporal dementia, he became less assertive to the point where he couldn’t even verbally defend himself.
how difficult has it been supporting your husband through young onset dementia?
he would get up four or five times a night, and as his sole caregiver, i’d have to be by his side at all times. we had respite because cognitively, he declined so quickly — he couldn’t have a conversation because he lost his communication skills. claude could still speak, but not in the way that made sense. i would have to tell him to undress himself for bed, and while he could shower himself, he couldn’t start the water, so i had to do that too, and stand in the bathroom and tell him to wash his hair. i also had to help him shave and brush his teeth. he was completely dependent on me. i had a respite worker so that i could go to the shop to do my woodworking, and then i’d get a call that claude was outside the house, that he was pacing back and forth, having a panic attack. i was so lucky to have found
youquest
, a local organization that supports people diagnosed with young-onset dementia and their caregivers. before his diagnosis, claude was a climber, a hiker and he loved the outdoors. so, he loved having a group to go to, where he could socialize and be active.