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Any other caregivers of Frontotemporal Degeneration out there?Caregivers: Dementia | Last Active: Apr 4, 2022 | Replies (22)
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Replies to "Hi @anncgrl, Welcome to Connect and thank you for sharing resources that have helped you and..."
I am doing well, thank you. I took my husband for bloodwork today. He wanted to walk rather than use the wheelchair so we had a couple of interesting moments but he made it through that and breakfast at a local restaurant. He walks very slow, shuffles his feet and I steady him from time to time. Gait instability was one of the first things we noticed that eventually brought us to the diagnosis of FTD. It has been a long journey with misdiagnoses, hospitalizations, stays in nursing homes with rehab facilities to strength his legs and the frustrations of an ailment that seems to morph into other symptoms once we figure out how to work with the ones we have already. I told someone it is like playing a game of whack-a-mole. Still I much prefer having him home. I am fortunate that he is not acting out with anger or any other types of behavior that might not be manageable. When I finish this post I will be cleaning up the bathroom. He wears depends and has been using a man's urinal quite successfully lately but loose bowels are another challenge altogether. We have both come a long way in dealing with the logistics of showering afterwards, cleaning up messes, his embarassment, etc. I do not make a big deal out of it and he has learned that I do not think less of him. But I am several years into active caring at this point. I encourage anyone dealing with someone who has FTD to have patience with their loved one and with themselves. Every situation is different. Do not take things personally. This took me some time to learn but has made a huge difference. I am not a saint. I go off at times and we have to regroup and remember that we are in this together.