We all want to be unique, but not freaks. So I have to figure out something cutesy to say about me. I’m here writing my bio because I want to start a blog for caregivers. Caregivers who have things they would like to say and do, but really can’t. At least not without guilt and shame.
Full Definition of CAREGIVER
: a person who provides direct care (as for children, elderly people, or the chronically ill)
That seems like such a simple definition. Caregivers, you know how complicated and difficult it is. Often I find it to nuanced and hard to explain.
My name is Alice. Pepper and I have been together for almost 18 years, of which, the first 4 were healthy and very happy. The happiest of our time together. She doesn’t remember most of it as Pepper has multiple sclerosis. I knew this when we got together, but her symptoms were very mild at that time. Something we spoke about but I never really weighed it fully. In my mind her symptoms were mild, I don’t speak for Pepper, so I only give my perspective. The symptoms, especially cognitive function got much worse over the years.
As with any couple, there is a long history and the details will come out over time I’m sure, but just a couple things. I’m an American and she is Canadian. We lived in the U.S. for the first four years, then I immigrated to Canada when she was no longer able to live in the U.S. The process to immigrate took 3 years. We were living apart during that time. I had a job that took me across the U.S. to different locations each week. I would spend my time off divided between being with my 2 boys, and with her in Canada. I felt homeless for much of that time. During that three year process Pepper began to have some very odd things happen. She started having accidents driving (eyesight). Headaches, facial pain and dizziness. She lost all sense of taste for a time, when it returned it was distorted and nasty. She lost an amazing amount of weight.
I have been in a very depressed state for some time. It ebb and flows, from less bad to worse, never good. Don’t get me wrong, I have good days! I have handled many aspects of my partners illness in the worst possible ways. MS is not a disease that gets better, only varing rates of progression. I withdrew from people, while accusing her of doing the same to me. I have watched her slowly get worse bit by bit. At times so slow that I often wondered “when did that start?” I’m terrible at asking for help. I will go without rather than reach out. I hate the idea of owing anybody anything, but I am realizing that is what’s needed. This is my attempt at that, not just to reach out for help, but to help hold up others who may also need it.
Pepper. Her back story. Wow how to do this and give the depth it deserves? Often I wonder about getting old and invisible, no longer listened to or considered. It’s a fear actually. At times I fear that she has already reached this point. She’s still young but relates to seniors. She’s most comfortable around a group of elderly folk. I find it irritating and a reminder of all that is wrong and a sign of things to come.
She was serious about school, getting through it. She went to college and worked with mentally challenged individuals. She enjoyed her work and was good at it. Pep had a goal to purchase a house of her own by the time she was 30, which she easily accomplished. She was in a long relationship with another woman before me. This woman liked to drink though, and Pep was only a social drinker at best. She was more serious than that and needed someone who was serious about her. That was me. I was very serious Pepper, oh from the very first moment I met her in person.
Originally we met online in the early days of the internet. Not everyone even had it yet, or able to get it.