The end of the long Alzheimer's journey is in sight for us, months probably. I can't believe that hospice has already been coming for six months. She still laughs and smiles (I am so lucky) but swallowing is now a big issue. I know what's coming and I'm OK with it, not an easy place for me to get to. At this point, I just want her to be comfortable and to feel safe and secure. I hope she can die where she was happiest, on our little sailboat.
My hospice buddies all worry about the "what about after" for me. Money is running low after all this time and I'm not yet old enough for Social Security other than survivor's benefits. I tell them that the plate is just too full now and besides, I don't know when. I'm used to not being able to plan anything and this is just one more.
But, I got an inquiry in the mail a couple of weeks ago about a job in my field, one that wouldn't require a move and that I could perhaps do a couple of days a week to start. I decided to at least go through the process--for sure that would be good for me after ten straight years of caregiving without a "real" job. I honestly have no idea how the interview went. Maybe it'll work for them, probably it won't. It's a job I should be able to handle easily, but I'm not sure I can. I'm pretty sure I can't handle it now, and thinking maybe I'm really not going to be capable later either.
When I look back on who I was when Alzheimer's started, I'm so different from that person I can hardly recognize him. I've changed both for the good and some for the bad. I'm unbelievably patient now. I'm ok with never being able to plan ahead. The confident person I used to be is gone, though, and I sometimes feel like I'm really only good for changing diapers. Rationally I know that feeling is wrong, but emotionally I often don't. For the future I wonder if there are really any pieces of the old me to pick up or if this person I've evolved into will just have to start all over again. As much as I tell everyone I'm OK (and I do that all the time), I'm not. This disease beats you down and tries to kill both of you. You both lose all the time. The wins are tiny fleeting bits that fly away almost as soon as you get them. You learn how to fight off burnout and sometimes just how to make it through until tomorrow. You grieve and you mourn as pieces of her disappear, never to return. Sometimes you forget who she used to be. And forgetting, having that little pang of fear when you forget something simple, thinking maybe you have it too.
But, it's the most meaningful thing I've done in my life. It's the best thing I've ever done. I've taken care of someone I love and mostly I've done it as well as I could. I know I've made this awful journey towards death better for her. I know she feels safe. I'd do it again with no regrets and my eyes were wide open when it started. All along I've felt that there would be time for me when she passes away and that is true. But there's a cost that I'm weighing now, and I don't believe I'll ever be capable of what I once was. That person is gone.
All through that interview I was thinking that I just didn't belong in that environment anymore. I'll belong somewhere and I'll move on, but Alzheimer's will have taken her away and taken a big part of me as well.