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.

9 thoughts on “Jim Has Lost Himself

  • Bobbie allen

    I feel the same way .its so hard watching my husband decline and more and more is put on me .Sometimes you think you just can’t handle anymore and then somehow you manage .This disease is so devastating to everyone involved . I wish the best for you I know it’s not easy Give yourself a pat on the back and a high five not everyone can manage what you do

  • Ashkhen Aristakessian

    As I read your story, I thought you were descrbing my life with Alzheimer’s. I feel your pain, I hear your cry, and I understand your worries about the uncertain future. We are grieving the loss of our life partners except that they are physically with us. The journey of Alzhiemer’s disease is filled with lonliness, hearhaches, anger, frustration, hoplessness, anxiety, guilt, and depression for the caregivers. Thank you for taking the time to write your journey. It is comforting to know that I am not alone.

  • Chris

    Who knew how literal “for better or for worse” would be? I’ve learned to let go of so many things. I’ve stopped being a control freak. I’ve learned to accept a lot of things, the most challenging-accepting help from others. I have always been a very independent woman. In my husband’s words, “I love that you are not dependent on me, but that you can depend on me.” Well, the first part is still true, but now I can only depend on his sweet smile every time I see him. I will miss his smile and his laugh when that day comes. I’ve been told it’s called living in Grace.

  • Pamela Adams

    Thank you for sharing, my thoughts. You have described our lives exactly. You can put into words, all that I am struggling with, and I appreciate this fact. I struggle to pay bills, even to find the time to pay bills, and I am a retired accountant. It’s all so hard, and heartbreaking at the same time. Thank you so very much for sharing your thoughts, and struggles. It helps to know, that I am not alone. I miss my husband, but, I meant those vows said so many years ago, “For better, for worse, in sickness and in health, till death do us part.”

  • Wendy R.

    I am sorry to read of Jim’s decline. Many who care for a spouse with Alz have adult children to help them – like I did for my mom with my dad. With young children, much of your care giving must be done (and processed) solo. I hope I never have to go through what you’re going through but it is a distinct possibility as my husband’s mother died of early onset Alz (the familial type) earlier this year. For what it’s worth – maybe not now but someday – your care and your character inspires others. From complete strangers who read this blog to your own children. Thinking of you.

  • Barbara

    You have echoed my thoughts. I so miss my husband, even though he is never far from me. On occasion he will look at me a certain way, or have a glint in his eye like he used to, and I will at first be struck with happiness with a brief memory of what he used to be like, and then be overcome with darkness at the reality of what is. It is such a lonely journey we are making together. My thoughts are with you and your children.

  • Kathleen Smalley

    There are so many of us and our lives are very similar, yet different at the same time. I can’t imagine how much more difficult it would be to still have children at home. I have to hold down a full time job b/c my husband is still at home, but everyday he moves farther away from me. Not sure what I’ll do when he needs 24/7 care. Prayers to you!

  • Donna

    My prayers are with you. I have a sister who has !idea what it is like to care for our mother. She continues to come over beating on the door, waking mother and never ask her how she is doing. She is like a drill sargent, upsetting our mother and continues to talk about death. Never anything positive, always negative. It is shameful to watch her actions each visit. I feel that I am going to have to take drastic actions to keep our mother safe. She can’t take her off because she won’t give her the daily medications, but will give her other types of medication not prescribe.

  • kacy Johnson

    Part of me is in denial and part trying to face reality. I am a 74 year old widow whose 55 year old daughter has been diagnosed with early on-set alzheimers, It is so hard in one way because she has a 10 year old daughter. She was 44 years old when she was born, and was so thrilled because she didn’t believe she would ever have children. As a mom, to watch this progress is killing me. Her husband if very helpful and caring. Their family lives right next door to me and I spend as much time as possible with her not knowing how many months or years we may have. Suggestions

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