Just a quick update

Jim painting Frances' room.

Jim painting Frances’ room.

Jim and I are headed back up to the NIH tonight after I get off work. The kids are away this week so I don’t have to worry about them. Just my Jim and I.

While Frances is gone these past two weeks I wanted to paint her room for her. She has been asking us to do this for a while. She finally picked out the color and I thought this would be a great surprise. Not a good idea on several levels. As I have mentioned previously, I work full time and my job has been pretty busy and demanding lately. I have had several events after hours to attend plus lots of time just following up and catching up. It is what you do when you have a JOB.  Without getting into minute details, I must admit I have been completely frustrated and also completely wiped out emotionally at this ordeal. In hindsight, I should have tried to hire someone. But I really thought that Jim would be able to do this. How hard is it to paint a small bedroom? I ended up painting several nights late into the early morning hours.

Jim has always been super handy. He knows how to take apart things, put them back together and have them running like new. It’s what he did in the Air Force. He can build things and definitely can paint just about anything as well.  I know he can. He knows to wipe down the walls to get them dust free and clear of any possible cobwebs lurking in the corners and above the picture molding. He knows to fill the holes and then sand them before putting any paint on them. He is very aware that you don’t need to put away the drop cloths and paint and brushes until you are done painting the entire room. Who wouldn’t know that you have to put on another coat of paint when you can still see the previous color on the walls? Isn’t it obvious that the white just above the picture molding also needs to be painted when you are painting the molding?

No. All of these simple tasks are not a given when someone has Alzheimer’s Disease. The guilt of expecting too much; the guilt of getting upset and disappointed and being frustrated overwhelms me beyond my abilities to simplify them into words or expressions. I am turning into a person I don’t like and who I don’t recognize. My insides are in a constant state of twists, turns and upheavals and it seems the more I try to control them and settle them and undo the knots, the tighter wound they become. The more emotional I become the more it seems I can not control my emotions.  The stress is starting to show on my face. I know this because I have had several people mention it. I need a break. From life.

My “break” will come. Tonight Jim and I travel to the NIH for the last of his follow up visits. We will have a night away before we pick Frances up from camp. Then we will get Brad back and our lives will resume. And the stresses will begin again.

Jim took his driving test. The center has a sliding scale for costs to help those that can’t afford the full amount. Thank you. JIM PASSED! Yes he did. I was so excited and relieved. I really wasn’t too sure he would. Or what I would do if he didn’t. It was a very thorough exam that was written, verbal and actual driving.

I have noticed that my expectations slightly rose after this great news. I mean, if he can pass a 3 hour test for driving and memory skills, can’t he figure out how to paint? Can’t he realize that he wore that outfit yesterday and it is not suitable to wear today?

For his part, Jim keeps doing his best. He keeps trying hard everyday to please me. He is sad. He knows what is happening. He doesn’t always seem to be aware of his changes, but he knows he isn’t the same guy he was a year ago.

Letting go. I have to let go of my expectations. I think when I do this though I will be giving up a little. I am such a strong fighter in all aspects of my life that it is just gut wrenching to stop expecting Jim to be Jim. Each little step of something he can no longer figure out on his own is a step closer to me losing him and the kids losing him and the world losing him. I don’t want to lose him. I want to fight hard enough to keep him here with me. Even though I know this isn’t going to happen, actually letting go of any hopes of our future together brings me not only to my knees, but makes me feel defeated, lost and terrified. Sometimes I just sit and cry and say, “I can’t do this. I can’t do this.” I don’t have a choice. I HAVE to do this. I can’t walk away. I can’t find a solution. I can’t make it better. Well, maybe I can make it better by releasing my anger, guilt, expectations and fears. I am working on it….

Brad helping paint.

Brad helping paint.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (4)

4 Responses to “Just a quick update”

  1. Wendy says:

    I look forward to your posts, as I can see myself in what you are describing and as sad as it may sound, I am glad I am not alone.

  2. Lee Ann says:

    I think sooner than later, we get to acceptance. Remember I had the husband that was severely mentally ill? He was pronounced safe to drive a semi long distance by his psychiatrist. yet the day before, he was sitting in the kitchen and I noticed blood on his socks. Asking him about it, he said, “Oh I got tired of clipping them, so I pulled them out.” Egad! We burned trash on a trash pile, and one day I noticed the hair was burned off his arm. “Oh, I like to burn the trash one piece at a time.” He was holding the trash in the fire. SMH. Yet he was safe to drive an 80,000 pound tractor trailer over the road! There are so many little things that add up to a whole. Hoping you can come to some acceptance.

    He’s trying. But then, as he declines, he will still be trying. Because that’s what he is, the person that fixes things, does things. But it is so sad. I think it would be better if he sat around and did nothing. but that’s not who he is.

  3. Michelle Fox says:

    You are getting closer. I remember some of the same feelings with my mom. I am so ashamed of some of the things I said to her because I did not want it to be true. I recall the last time I lost my temper with her. That was about 2 years ago and now she is leaving me slowly day by day. Don’t get mad, they SO can’t help it. If they could, they would. Enjoy each day, that is what you have, let tomorrow take care of itself.

  4. Ann Napoletan says:

    My heart breaks for you, Karen, and I applaud your courage. Sharing your innermost thoughts, fears, and emotions with the world – you are helping more people than you can begin to imagine. May God bless and keep your family today and always.

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