Change and Enlightenment

life changing quotes

Another first. Another heartbreaking moment I had to take in and keep in until I was alone. I must say that a talent which has always eluded me is becoming second nature….controlling my emotions and my ability to mask my emotions. I am not sure if this is a good thing, but it is a change and I will use it for the betterment of Jim. It is imperative that I not let him see each and every time I hurt or that I feel lonely or angry or frustrated. In my past, I have always had a bit of pride in the fact I am an open book. In a world full of games and hypocrites, I wanted to stand out as a person that you knew was telling it like it is and that you knew, really knew as a friend. Whether you liked me or not, there were no surprises.

Who is the Karen that hides her feelings and emotions? Who is the Karen that denies the pain and the desires?

I wore a shirt to work that had ties on the sleeves, right at the elbow. I couldn’t tie them so I asked Jim to. He couldn’t either. It wasn’t that he had forgotten how to tie a bow, he just couldn’t get his strong hands to be nimble enough to tie a bow.

I told him not to worry about it, no big deal. I needed to get out the door anyway. So I walked out with tan strings hanging down my arms and tears stinging my eyes. And then I sat in my vehicle and felt the sadness and grief wash over my body. I could feel the weight of realization crushing me. The immense sorrow filled me completely until I realized I needed to work and I turned on the radio, put the van in drive and began my day.

This is a tough, tough situation. Tough for me. Tough for Jim. Tough for the kids…..

I must focus on whatever is immediately at hand. I no longer plan past the day I am living in. I only deal with the immediate hours coming up . It is a coping mechanism that is unusual for me. I still catch myself trying to worry about something days away and I am somehow forced to re-focus on my current state of affairs.

I sometimes wonder what people think of Jim when they first meet him. Do they just think he is a little quirky? Do they think he is aloof and doesn’t care? I want to scream: “HE HAS ALZHEIMER’S AND WOULD NORMALLY NOT BE LIKE THIS!!!” What would a stranger think if he watched a grown man not be able to tie a simple bow? What does that parent at the ball field think when Jim makes a comment that really just doesn’t make much sense? I need a film of Jim 10 years ago to walk around showing off what a magnificent human being he was. He is. Just in a different way.

As upset as I get, I know we are blessed with so much. Inevitably something comes up that reminds me he is fading away from me, from us, which makes it hard to find those blessings and be grateful. But, then, life will happen that reminds me.

A recent reminder came in the form of timing. Timing is always everything.

This past weekend we had MANY things going on. I had to prioritize and plan. Everything about our weekend was scheduled down to a “T”. First, we would drive 4 hours on Friday afternoon to Brad’s Odyssey of the Mind competition, which was scheduled to take place early Saturday morning. Immediately after he was done, we would load back up and head to my hometown in Eastern NC for a 5 hour drive. We would make it just in time for my father’s induction in the local sports hall of fame. Then, Sunday morning, we would again be up bright and early to head the four hours back home, with stops along the way for softball and baseball games. Everything was timed perfectly and literally along the route we would be taking to get home anyway. It was a schedule that had been meticulously honed down and worked out with a lot of stress and decision making.

Everything was going as planned until Saturday morning when we arrived for the Odyssey of the Mind competition. The prop truck, which held the backdrop, costumes and set, was lost and would not be there in time. The team was re-scheduled for early afternoon. This one driver getting lost was putting a huge kink in everything that followed for our family  the rest of the weekend. All of the plans that I had meticulously worked out were immediately vaporized by a complete stranger.

At first I was mad. I was angry that I would now have to leave Brad behind or miss my Dad’s special night. I would miss his performance. I had been so grateful the two major events planned on the same day 5 hours apart were going to be doable so I didn’t have to choose between my Dad and my son and now it was looking like that wasn’t going to be the case after all. So I chewed on the new situation for a bit. Then it all became clear. I am not in control. I was trying to control all of the events and driving and circumstances. But I can’t control everything. The sooner I learn this lesson, the sooner I will be able to accept our situation. And that will be the sooner I can learn to relax and let things go.

So, I took a step back, realized this was happening whether I liked it or not and moved on. I was able to let Brad stay without us, be there for my Dad and get Frances to softball. Brad ended up missing his ball games, but we were all ok with that. Life goes on. There will be more games next weekend.

The one really sad part for me was missing the very exciting moment when the winners were announced for Odyssey of the Mind. I am proud to share that I missed hearing my son’s team called for first place. They will be traveling to Iowa the end of May to represent Virginia in the world competition, competing against 860 other teams from around the globe.

Now a whole new set of priorities, planning, scheduling, fundraising and stressing begins….

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

3 Responses to “Change and Enlightenment”

  1. People ask me what stage Joe is in. Last week I tried to get his attention but he was in his own world. Finally he bent down to kiss me then back to the place he was in before the kiss. That was last week. Today I said my name and ask he knew me. It took thirty minutes, a pkg. of M&M, and a coke before he kissed my hand. Every visit is different. He did tell me he was ready to go home and I told him me too. Without him at home with me it is just a house, For now I will keep on living until I’m alive again, if ever.

  2. Kimberly Smith says:

    The past week my husband has had yet another decline. Every time it happens and I see a little more of him slip away, it breaks my heart. My Mother is spending the night with us again, partly because of some bad weather moving through the South, but the other reason she’s scared to be alone. She also has dementia and she’s having auditory and visual hallucinations. Between my husband and my Mother, I feel an overwhelming sense of grief and loss of my two best friends, slowly being taken away from me. It doesn’t seem real and it’s such a cruel disease. I’m glad your weekend went well. Hugs and prayers, Kimberly

  3. Marsha Oblath says:

    Karen, you are a fabulous speaker

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