You left so long ago, but you're still here.
You know my name, but you don't know me anymore.
It's been a long time since we were lovers. It's been a long time since we were friends.
I try to reach you. I try to find the light in your eyes.
But I lost you.
And then I lost myself for a long time.
Now I've found an old friend and he is helping me live again.
He makes me laugh.
He helps me through the days when I don't want to keep going, when I want to run away.
He helps me have quiet, normal times when I can set my struggles and guilt aside.
You would like him.....I wish I could bring you back too.
This was something I wrote last winter when I was trying to understand how I felt about my life, and what was making it so difficult. I was trying to write in black and white - get it into some simple sentences so I could have a clear picture for myself of what I am struggling with. I have shared it with others - the support group I go to once a month; my therapist; my primary care physician; my family. Trying to give them a picture of my life right now. Trying to help them understand as well as trying to help me understand. Kind of crazy, right? But in a nutshell, it is my struggle.
So the "old friend"? Yes, he is a friend I worked with 50 years ago at a small library. Found him randomly on facebook by a post he made on a town website. Sent him a message on Messenger asking if it was the same guy I'd worked with many years ago - asked him who ran the library when we worked there, and what kind of car he drove - just to verify I wasn't contacting some stranger! Turned out he lived back in the town we both grew up in - and we began having lunch once a month. In the fall when I was going through some trying times with my husband - a couple of trips to the hospital - frustration over life - he was so supportive and kind - telling me to breathe. We just text - he has become a touchstone of sorts - someone normal to share a pic of a beautiful sunset, or a funny thing that happened, to ask what he thinks I might need to do about a car problem - whatever might be the latest problem of the day. Some acquaintances and family members were sure this was a romantic sort of relationship. And I have to say, I felt like I needed him so much to get through the day some times that I had to wonder that myself. But I have figured it out - he is important - brightens my day - and he is a friend, a lifeline for me. I told him he has kind of become my platonic significant other. And he is good with that. I need him a lot more than he needs me - but he seems to get that, too. He is probably the only person who has seen me at my lowest - and yet seen me at my best when I am relaxed and laughing and happy. My most authentic full self. I find that the longer this disease runs my life, the more I have lost of ME - has anyone else had that feeling? I don't know if it's because I've had this going on for so long? Or if all living with this as a full time caregiver feel this too.
I decided this past winter to try to do 70 new things before I turned 70! I haven't quite completed 70 new things, but I've made a dent! I could not do any of the big things I first thought about - like go see a Broadway show in NYC with my brother who lives there. So I've stuck to some simple things. Like exploring a few places close to home that I haven't been to before - or trying coffee for the first time! Yup! I'd never had coffee! When my youngest son was visiting this summer, we went to the park and I rode an electric scooter! So fun! And last week I went ziplining! SO FUN! I'm trying now to establish a "community" for myself - whether it's a book club, or some volunteering. I need to have some normal interaction. I am burning out - fast and furious.
I struggle with the guilt of having fun, of feeling like I deserve this. I struggle with the frustration of trying to create a life for me all over again - it is easier said then done. I have grieved the loss of my husband, the loss of all that we were going to do once we were retired, and the loss of myself. Then I had to grieve again with the realization that it was not so easy to live again. But I think I'm a better caregiver now - and I've actually started walking every day, several miles - started an exercise class - lost about 25 pounds - I'm in better shape than I have been for years. I am frightened that I may never get to live a full life - I'm 70! I'm ridden with guilt that I'm living a life that doesn't fully include Dave. He has had some decline in the last six months, and yet is still continent. He needs some help with toileting, with dressing. He just watches TV and plays his solitaire game most days. I take him to the park and he sits on a bench while I do my walking - he is not a wanderer, thank goodness. He goes three days a week to an adult day program for folks with dementia. And it has become a part of his routine that he is very content with. His gait is poor, and he moves very slowly and uses a cane for support. Short and long term memory is very poor. Comprehension of conversation is difficult for him, and word finding is getting to be a problem. But his health otherwise is really good! And his parents both lived into their mid 90's. So I may be in this for the long haul if I don't flame out! He is very content - not an angry person. It is what it is - and I'm trying to make the best of it, and not feel guilty about it.
So - I haven't written for awhile. I really don't know if anyone is reading this. Or if it is helpful to have a shared experience at all. Though the statistics show many many views of my blog, my understanding is that a lot of it is sort of a computerized scanning thing? Sort of automatic? Most of my views are from China! Ha! So I don't know if humans are reading. If you wouldn't mind leaving a comment - just a short "hey" so I get a sense of if there are humans out there that may be reading this and finding it helpful? Or someone who may have advice for me? That would be appreciated.
Fall is here - my favorite time of year. So I'm hoping for some beautiful weather, a few new adventures to add toward my goal of 70 new things - and acceptance of this life as it is, while still trying to find good things in each day so I can keep on keeping on!
