Life has started over again despite the setbacks of the impact of Frontotemporal Degeneration on the life of my husband, me and our family.
Gary went home to be with the Lord 4 months ago. He is no longer suffering. During the last 5 years I had to deal with his disease in a very real way while still working full time as a university administrator while coupling as a caregiver. It was exhausting. The whole scenario unfolded over a period of years and all of a sudden, I found myself overwhelmed. I just slid into my new role of caregiver or as I call it un-wife. I always talk about what a great marriage we had and we did....but NOT during the years of FTD. He slipped away about 8 years ago.
In reality, he was not there for me and was high maintenance even before his diagnosis. He was 100% dependent on me. He could not help his behavior and I spent many years resenting him thinking that he could prevent it. Those years of anger are my only regret. Had I acted differently, nothing would have changed in his behavior but probably many hurt feelings would have been prevented.
If I have any advice to give families of those suffering with FTD, its be aware that they have a disease and you might need to imagine that the human form before you is not really the family member you have lived with before now. That person in your memory is already leaving or gone. Do not be upset with them. Find a support group or a way to deal with your pain away from them. Grieve them while they are alive.
Meanwhile, I have started to feel like my own person again. I am not spending $8000 per month on memory care. I am improving my house, dating and having fun again. There is life after FTD. Am I a better person for having the experience? Yes. Would I do it again? No way. I am just thankful that my husband of 32 years is in a better place and no longer suffering.
At the end of this month, I will join his daughter and grandson and some dear old friends to spread his ashes over Yosemite. He is finally free.
Ada, as always thank you for sharing your thoughts. I have followed your blogs for a long time. You have showed incredible toughness over the years managing this disease. I am glad you are focused on a new life and I hope you find peace and FUN. Diane
ReplyDeleteWhen the frenetic anger, agonizing hurt, and deep sadness subsides, compassion returns. But with compassion, I find as though I am walking along the rim of a great dark crater of despair. So I strive to be a few feet back from the crater's edge, keeping my balance as I continue my journey of caregiver to my bvFTD husband of nearly 39 years while trying to live my life with joy and peace. I so appreciate your words, Ada. Thank you for continuing to share.
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