It seems over the last couple of years, I have truly lost sense of who I am/was/will be. As my husband has declined and I had to quit work two years ago because he couldn't be home alone for so long, I have been identifying myself only as a caregiver in my mind. I've already grieved the loss of who my husband used to be. I had years of patience, years of hopefulness that I could do this. But over the last year, I find my patience is dwindling; my feelings of resentment rear their ugly head a little more often. As Dave requires more of my direct supervision and help beginning in the spring, whether it's with toileting, showering, laying out clean clothes each day, taking his medication, eating his breakfast, making his lunch, making his dinner, I think - what about me? I feel guilt for feeling resentful, guilt for sitting on my back porch at night once he's settled in bed and feeling the tears well up, guilt when I meet a friend for lunch while he is at his adult day program three days a week, guilt for asking what about me? Eleven years ago, I thought I was superwoman - that I could do this - because he probably had only 8 to 10 years to live. But for the last year, recognizing he is pretty healthy over all, and I've been told he could go on another 20, I have been stuck there for awhile, in a state of mind that is "poor me". I don't like this person I've become. I think I am grieving the loss of "me" now. My husband's symptoms started over 20 years ago, with diagnosis 11 years ago. And it could go on for 20 more ?? His has been slowly progressing over that time. I'm the last of the group of four that met monthly for lunch beginning about 10 years ago - we all had husbands with FTD. Two of the group lost their husbands over the first five years we would meet. The third person just lost her husband about a year ago - I'm the last one! I guess we won the lottery spot on the bell curve of how long people can live with this disease! And that's another thing I feel guilty for - how can I even think that??? Anyway, I don't know if I can do it for 20 more, not with how I feel lately. I can see why caregivers "burn out" - and perhaps get sick and die before their spouses.
I recently had an epiphany....a couple of months ago, I was on Facebook, looking at a page about the history of the town I grew up in and lived for another 30 years as an adult, and saw a comment made by a person that had the same name as someone I worked with at the little library across the street from where I grew up - hadn't talked with him in probably 48 years? I reached out to him - it was him! We texted a few times and agreed we wanted to continue the conversation and catch up. So we've met a two times over the last couple of months - and talked about everything under the sun - except FTD and the pains of caregiving. I did not get pitiful glances from him. I didn't think about my caregiver role for those few hours. I didn't feel sorry for myself. It was kind of like getting flowers from someone for no reason - it lifts your spirits - boosts your energy - makes life a little better! Made me realize - wait a minute - there are things I can do for me. I can start taking care of myself, and STILL take care of Dave. I can do things just for me - and still take care of Dave. I deserve to have a life besides caregiving. In fact, I'll be better at taking care of my husband if I find some things to do that I enjoy, some people to talk to about life instead of FTD. For a few days, I've been mulling it over - feeling hopeful for my future - feeling like I do still have a life to live - it is not over, even though it sometimes feels like it. I'm allowed to enjoy myself, treat myself, find something I enjoy doing - and I shouldn't feel guilty about it! In fact, doing things just for me, I find I am more patient with my husband. I don't well up with tears many evenings once my house is quiet. I don't feel resentful having to assist my husband with so much daily living skills because I'm making sure I get a boost for myself.
I still have life to live, people to meet, adventures to have. I still have part of my story to write! My obituary some day won't say "she spent the last 30 years of her life as a caregiver to her husband" - that will be one of my roles, and certainly my most important, but I have more to do. It has helped so much over the last month to lift my spirits and to help me see that things are OK - that I can do this, as long as I take care of me too! So simple - and so true.
I hope anyone reading this is taking care of themselves - and not feeling guilty for doing it - not feeling guilty for sometimes hating their life - because they can find a balance by living their life, continuing their story.
Take care.
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