When I was a little girl, every Saturday I rode my bike to a wonderful local bookstore. I would buy a book and then spend time perusing the shelves for another to covet for the next week. I would ride to my piano lesson, hack away on the keys and then jaunt across the parking lot to a bread store. There I would purchase old loaves of bread for .05 and head back towards home, stopping at the local pond to feed the ducks.
It was a great Saturday morning ritual. When I returned home, my chores completed, I would sit and read my book. Life was simple, uncomplicated and good. I’m not sure I saw it that way at the time.
The problem was I would finish the book, usually in one sitting, and have a whole week to wait, to earn my allowance to get enough to purchase another book I would inevitability devour within a day and have to wait again.
I am still the same way. Sometimes reading until 2 or 3 in the early hours. I have been told I am intense. Once I lost a very good friend for this very reason and I am sure I have lost potential friends as well. I go full throttle with whatever I am doing. Relationships included. Jim liked that about me. He was intense on the sports field, but in day to day life he was easygoing and simple. Simple and passive. We made a good team.
Do you see how I am putting him in past tense?
The truth is, he no longer cares about any of this, so it is written in past tense, even though he is still living and breathing next to me every day. I loathe the fact I write about him in some ways as if he is no longer with us. I feel it degrades him, lessens him, loses him.
Life has a way of teaching you to accept those things you deem faults. I have struggled my whole life with several things. Worrying about things I didn’t need to is one of them. Now, I am forced to only focus on what needs to be focused on at that very moment. I am being forced to truly live day to day, sometimes moment to moment. There are times I feel I have accomplished something major just by finishing a load of laundry or fixing dinner or just getting through the day without forgetting something major.
What a change from a few years ago when I didn’t even need a calendar to keep up with my life and I certainly would have been appalled if the only thing I finished was a load of laundry in a day. I had much higher expectations of myself. Now I feel like I should just be happy if I am not behind on bills, Jim is happy and in a clean and appropriate outfit for the day, and I have fed the kids at least one meal during that 24 hour period.
This is a long way from the intense girl who was told she was too focused on the cleanliness of her home among other things. Life has a way of forcing you to change, even if you don’t want to. I no longer have a clue who I am. I am a work in progress. Who I was is not who I am, and I know who I am not going to be. It is a little scary and a little exhilarating. Not many in this world are forced to face their weaknesses and fix them, let alone change completely. I must look at our situation as a way to become the person I was always supposed to be.
There are times I am overwhelmed with sadness. Sometimes it is for Jim. To watch his decline is unbearably painful. Then I fall into despair for the kids. Their grief over losing their father is completely understandable yet it is gut-wrenching. Every once in a while, I take a moment to think about me. Being a 45 year old woman, knowing I will eventually be a widow (if I survive), and the loneliness, constantly being solo at events, travels, and basically in life isn’t enticing or ideal. I struggle not to wish for something different. To do so requires either a miracle for Jim that has never happened, or to find someone new.
Obviously I would love for a miracle to happen and Jim to become his old self. At this point, I must admit that is hard to remember and to imagine. It is hard to see him as anyone other than the person I am now responsible for. How I long to have the “old” Jim back. How were we so happy? How did he do so much around the house? Can the kids see the Dad he was instead of who the disease has forced him to become?
There is no happy ending. There will eventually be an ending, but it will include the loss of a great man, which will inevitably make it an unhappy ending. What could I do to change the outcome? What can I do to help us, to help the kids and Jim and me? We are all separate entities, yet the same.
Jim used to love to read too. He read tons of Stephen King. When we met, he had read every book. It was always an easy holiday gift. Now, he can’t even follow one of the novels by audio cd. The man who devoured crosswords puzzles and told me he would rather sit in a corner alone reading a good book than going out with friends is not able to do either.
There is not a way to express the guilt and struggle that accompanies being a caregiver. This isn’t something I signed up for. I am not a perfect candidate. If this were an election: I would lose. No one would want me on their team to take care of and provide for a patient with Alzheimer’s disease. Yet, Jim is stuck with me and seems happy to be so. I wish I was so confident in my abilities.