Debra’s Perspective Part 1

I asked my wife to write a couple of posts. For the record, my last blog, Part 4 was written only with Debra’s assistance. My short term memory is not good, I cannot recall details of my last Doctor’s appointments or even details about some things from work that Debra references in this post. Thank you dear!

Mike

I have been asked to write a bit about being a spouse of someone with Early Onset Alzheimer’s disease.  There is a myriad of challenges and emotions I am now faced with.  I wish for childhood days of getting on my bicycle and biking around town with my friends, feeling the breeze brush back my hair.  And as time goes on it will only be harder and harder to name the emotions one is feeling.  And for every emotion there is a new symptom that is now living in our house.  We live with company everyday now.

My husband, Mike, has had one major stroke and several small TIAs.  Because of this health complication so much of what I thought about his health had to do with the strokes.  It didn’t occur to me in a very real way until well past his neuro-psych exam that he had anything else to complicate an already complicated health system.

Even as I sat in the room with Mike listening to the results of the neuro-psych exam I STILL did not want to think about a diagnosis of Alzheimer’s.  I wanted everything to be placed in the basket that held his stroke diagnosis.

Let me explain.  It’s not that I don’t let change happen because I do.  But I have to be punched, with some reasonable amount of force, in the gut before I really acknowledge anything.  It was not beyond the pale that I too was ignoring Mike’s symptoms simply because it had not punched against me with enough force.

We live a very quiet life.  Mike had a job that he greatly enjoyed and wanted more than anything to move toward retirement with that job firmly in place.  I wanted that for him as well.  Since our marriage five years ago and I moved to Omaha I have not worked outside the home.  I tried to actively find a job when I first moved here to join Mike.  But nothing was really presenting itself.  So I got busy with other things.  I love the life that Mike provided with his job.  It worked for both of us really well.  There was no reason to mess around with that combination.

When Mike now came home from work in the evenings he would so often say, “I’m just exhausted”.  There weren’t many days that he didn’t say that very thing.  Since his stroke in 2011 he voiced that exhaustion almost every night.  He would almost crawl into his recliner and turn on the TV.  He loved his mix of crazy TV shows.  Once I got dinner made I would join him and I too would watch some kind of crazy TV show.

I was starting to notice that some of the relationships on TV shows were confusing him.  I really didn’t know what to say to him about that development.  When we first met what I really enjoyed was his quick wit.  He was quick and I really liked that about him.  It suited me so very well.  We had “come-backs” for everything.  Probably one of the dearest things I miss the most about him now.  He was starting to look at me and say, “Boy, I didn’t see that coming.”  At first I’d tease back and say something kind of witty and let it go.  But it was happening with a frequency that was almost making me angry.  “What do you mean “you didn’t’ see it coming”?  It’s TV!”

If asked I would now say this is what I first noticed about Alzheimer’s, he got confused with connections that had been a walk in the park for him before.

In January of 2015 he had a neuro-psych exam.  I did not go with him for the initial tests because no one allowed to be with during the exam.  I did go with him to get the results.  I’m not sure of the why’s but it did seem to me that the memory issues and their results were downplayed as the tests were explained.  Or maybe I didn’t want to hear what she was telling us.  In any regard I did not think a thing about Mike having Alzheimer’s.  I was still thinking it was all a product of his strokes.  We left the office and I went home and Mike went back to work.  I didn’t give it anymore thought.  But Mike sure did!

We’d been to the doctor often enough and we were told plainly that Mike had had enough MRIs and CAT scans to show diseased brain if there was any and there wasn’t any except for his initial stroke.  And the area touched by the stroke was very, very small.  The stroke was dangerous because of its location and he was lucky that he didn’t have any lingering handicaps to deal with.  But there were no other signs of disease.

I really do think the reason Mike got a neuro-psych exam was because he was insistent.  He was not going to let this drop.  Me?  I probably would have let it drop.  What I saw at home and what Mike was experiencing at work were worlds apart.  His work was paramount and he was insisting.  I was the one with the disconnect. I did not see Mike at work.  Mike knew something was not right.  He was insistent.  His doctor set up the appointment at Mike’s insistence.  I was still in denial.

For example, Mike had been to a conference a couple of weeks before his appointment.  He was feeling great.  He was in great spirits.  I really had to doubt if this appointment was even necessary.  He slept well during this week as well.  I was very happy and secure with how Mike’s health seemed to be going. But the conference didn’t last forever.

He was back to work and whatever stress he had been feeling was magnified.  I was so worried about him.  I cleared my schedule of everything.  I sat with the phone in my hand at all times.  I couldn’t concentrate on anything other than Mike and what I thought he was going through.  He was sure everyone at work was looking over his shoulder.  He keenly felt that people were talking about him and doubting if he could do his job.  He was, in fact, called into a meeting and was told that he would be losing some of his authority.  Some of the divisions he managed were taken away.  He was very upset and his blood pressure was horrible.  I was so scared that he would have another stroke.  And he did.

Debra

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