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Watching Jim Slip Away

February 5, 2015

Five years ago when we started getting a sense of what was “wrong” with Jim, I was a stay at home mom with two young children. Jim worked as a government contractor and traveled quite a bit. He had a lot of responsibility and carried that burden with ease. Jim was an involved dad. I was really so lucky, and looking back, I wish I would have been able to really appreciate how hands on he was: PTA Vice-President, volunteering at pre-school, coaching ball teams, changing diapers, doing dishes, and helping with the laundry. I suppose you could say I was spoiled, but at the time, it just seemed like I had hit the husband jackpot.

It is hard to imagine, just these few years later, that he had top security clearance and he was highly respected in his field. It is difficult to see the man that was when I am looking at the man that is.

Through all of the doctor appointments and discussions between us, how could I have foreseen how difficult it would be to watch the man who could do anything become less and less capable?

I used to yell a lot. At Jim. At the kids. At myself. I used to think it was because I was so angry. But I didn’t ever really feel angry. Recently, I realized why. Partly because I was scared. Scared of losing Jim. Scared of being a single Mom. Scared of losing our home, our friends, my job (I started full time the day Jim stopped), and most of all, losing all of the dreams that were yet to come to fruition. What I hadn’t taken into account, is whenever Jim did something that I knew wasn’t him, but the disease, I still got upset, and sometimes, I let that be heard. It was so frustrating to try to figure out why.

Only through much soul searching and introspective honesty have I come to realize that every time Jim shows symptoms of his disease, it reminds me of what is happening. It shows me he is progressing. And now, that he is showing more and more signs, it breaks my heart to see him so fragile and confused and so unlike himself. It is the hardest part so far about this journey and one I just didn’t foresee.

I have thought about the talks I will have and have had with our children. I have thought about nursing homes and in-home care. I have had meetings about our finances and legal paperwork. But when it comes down to the day to day life we live, I am engulfed with sadness and despair as I watch his demise bit by bit.

Not long after Jim was diagnosed, I asked him to write out letters to the kids. Letters I would give them at graduations and weddings and important dates throughout their lives. I also asked him to write out what he would want in his obituary and details he wanted for his funeral. I didn’t really stay on top of him about this, but I did remind him several times (probably to the point of annoyance and being a little morbid). Now we cannot find any of this paperwork. None. Not one scrap. I am worried he threw it all out. It is too late for him to re-do. He can no longer write out a complete sentence and he wouldn’t have the mental capacity to express what he really would want to say to our children at such pivotal times in their lives.

I am mad at myself. I should have been more on top of this. I should have found the writings when he originally wrote them out and put them away. There are excuses, but in the end, if we don’t find these things, it is ultimately my own fault.

As I was just speaking with Jim and asking him if he was aware that he is declining some, he got teary eyed and said “no”. I thought that is nice, at least he doesn’t realize what is going on. Then he told me, “I am getting worse and worse.” Yes, he knows, which makes all of this even more unbearable.

I looked at him with much sorrow and said, ”You are slipping away way too soon, but way too slowly.” And he agreed.

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Thoughts and stories from others

  1. February 10, 2016 at 06:54 pm
    Posted by Ahron

    The plan appears quite covesehpmrine. To carry out the plan and based on the size of the state and sad but true inequities in available services, a team of coordinators may be required as opposed to one person or satellite coordinators simply to gather all the necessary information to move forward. The current tool used for assesment for facility placement is inadequate and does not allow for a true reflection of needs or remaining areas of strength which are equally important. The people I see starting to get lost more in the service cracks are those with the dementias such as Pick's and Lewy Body that people are basically scared of because they are only aware of negative aspects and have little to no postive behavior support available either through training or from the community. These are also the persons most difficult to try to support in the home. Thank you to all who worked obviously very long and hard on this plan.
  2. July 9, 2015 at 10:55 am
    Posted by James Kliner

    I am so thankful for you and other folks who are letting people know about this horrible disease. I am also blogging about our journey down the road of Alzheimers, my wife and I have been on this road for 15 years, she was officially diagnosed five years ago. Though the standard medications slowed the progress down it is speeding up this past year. Again thank you so much. hugs
  3. March 24, 2015 at 06:33 pm
    Posted by Sandy Eakin

    thank you for sharing. I feel like a am in early stages. I see my mind slipping away rapidly. It runs deep in my family both sides. My older sister has had it for about 4 years now. I am so scared and hope I die before i am diagnosed.

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