Tag: Alzheimers

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Testing, testing . . .

(Originally posted in Facebook on February 13, 2019)

By the time M was able to schedule the long, four-hour psychological assessment, it was well into the fall – late September/October. And we started this process back in January.

The day of the assessment, M wanted me to go with him – even though all I would be doing is sitting in the waiting room for four hours. I knew he was nervous, so I loaded my Kindle with some new books and settled in for a morning of people-watching in the waiting room. There was a 10-minute break during the testing and M was very concerned when he came out to talk to me. He knew he wasn’t doing well, but couldn’t really describe the types of questions he was being asked. At the conclusion of the testing, the psychologist met with both of us for a few minutes and told us that, although he would need some time (of course!) to accurately score the assessment, he did believe M needed further neurological assistance for his cognitive issues.

HOWEVER, in the many months that had passed since our initial meeting with the neurologist in this particular practice, the entire practice had been purchased by a new health system and the neurologist had left the practice. So now, we had a neurology practice without a neurologist. Did we have another neurologist to whom he could send his final report?

Great.

My initial thought was to work exclusively with the neurologist we had been seeing for our migraine headache issue, but I found out that she doesn’t work with dementia and cognitive issues. Fortunately, she recommended another local neurologist who could help us and we were able to get an appointment with him in November. By the time we got in to see him, he had the results from all of M’s blood work, CT scan, MRI and psychological assessment. He was incredibly nice, very enthusiastic about the work we had already done and determined to get to the bottom of what’s going on. You’ll never believe what he wanted to do next.

ONE. MORE. TEST.

If you think you can hear M yelling from where you’re sitting, you’re not wrong. He was NOT HAPPY about having to be subjected to another test, but he did it.

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Take a Break

(Originally posted in Facebook on February 12, 2019)

In the middle of all the testing that M was going through and the increasing confusion I could see, he was continuing to suffer with more and more migraine headaches – and no one but the two of us seemed too concerned about that fact. All his tests had come back negative for any kind of tumor or blood vessel problem that would indicate a physical cause for the headaches, so none of his MANY physicians responded when we talked about the increasing number of headaches he was having and the increasing number of days he was missing from work. And this is a man who NEVER missed a day of work. There was finally a point where he was taking sick days he was no longer being paid for because he didn’t have any more time available. It wasn’t that big a surprise to me when I came home one day during the summer and he told me that his employer had given him a Medical Leave of Absence. Essentially, he was to stay away from work for one month and, during that time, he was to have a physician certify that he was physically able to do his job.

I’ve dealt with migraine headaches myself for over 25 years and I have a wonderful neurologist who works exclusively with migraine issues. I hated to bring one more doctor into the mix, but we needed to get this handled and I didn’t know who else to call. So we got M in to see my headache doctor and it was really the best decision we made during that whole time. She agreed that he could go back to work, but not in the same capacity he had been working. He needed a job with less stress, less working in a tight, cramped environment, surrounded by chemicals, and in a temperature controlled environment – not outside with temperature extremes. Of course, the company he works for didn’t have to accommodate all those requirements, but fortunately they did . . . at one-third less pay than he was previously making. He’s doing less work, so he’s making less money – I get it. But that’s meant serious belt-tightening around our house!

M had his last serious migraine the day before he was told to take the medical leave of absence. Of course, he didn’t have any during the month he was off work. Since he’s been back to work, in his new position, he hasn’t had any, either. He doesn’t like the new job – says it’s boring and all he does is push papers around all day. But at least he’s not suffering the way he was.

There has been one bright spot in all this – in the industry where M has worked as long as I’ve known him, it’s a very male dominated work environment. There are women in the office areas and in certain divisions of the company, but traditionally not where M has been. In his new position, he’s working with primarily women for the first time in his work life. He is stunned – STUNNED – at the way women treat each other and talk about each other behind their backs. Every day he comes home with a new story of how two of them aren’t getting along and how it’s affecting everyone else. He’s staying out of it (I hope!!) but he can’t believe it.

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Set the Table

(Originally posted in Facebook February 11, 2019)

Nothing like a gloomy, wet Monday to start a work week. This past weekend was uneventful. There was only one incident with M that concerned me. We have my parents, our older son and his family come to our house every Sunday night for dinner – it’s a great way to get everyone together and to see the grandkids on a regular basis. As I was trying to pull everything together last night, I asked M to help me by setting the table. Now, it’s always been apparent that he never had to do this growing up, the way my brothers and I did, because his mother didn’t drill the proper placement of the silverware into him the way my mother did into us. I’ve always had to tell him “fork on the left, knife and spoon on the right, knife on the inside,” just like I did last night. But, of course, last night was different. He still wasn’t getting it. So I said, “here, let me do one as an example,” and I set one up for him. Then I went on with what I had been doing and left him to it. We had seven people for dinner last night . . . when I went back into the dining room after he had gone back downstairs, there were seven different set-ups for the silverware on each placemat. No two were the same – even the example I had done for him had been changed. And each placemat had two napkins on it – one on the left side and one on the right. I didn’t say a word. I fixed everything, so that no one would notice (and I knew he would never pick up on it – he didn’t) and dinner went off without a hitch.

As M and I continued with the neurologist’s office and the interminable appointments for testing, the next one on the agenda would be with the psychologist. He would complete a four-hour assessment . . . but first he would meet with M and go over his earlier test results and then let us know in a couple of weeks if he would accept M as a patient. Really?!?! Your colleague IN YOUR PRACTICE has referred my husband for an assessment, but you have to decide whether or not you want to take him on?!?! That was one of the days I came really close to biting a hole in my tongue!!

After several weeks, M finally got the green light, so he met with the psychologist for a short session of testing, while I waited in the lobby. I was called into the office to talk to both of them for a few minutes at the end of the appointment and I got the feeling that the doctor didn’t understand why M was in the office. Ahh . . . I thought – M must have done well on these tests. The doctor asked M why he was coming in for these visits and these tests and he motioned at me with his thumb, “You’d have to ask her.” Great. Now I’m “her.” I calmly explained that I was concerned about his memory and cognitive issues and told the story of the candles in the window at Christmas. I could feel M scoffing at what he called my over-reacting and was afraid that the doctor was going to agree with him. Believe it or not, I was relieved when the doctor said he wanted to continue with testing and wanted to schedule the much longer test with M. This was May or June and, thanks to vacations and health care systems buying out different physician practices, it would be nearly October before M would actually take the four hour psychological assessment.

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No Patience

(Originally posted in Facebook on February 8, 2019)

I know I’ve been going down the “how did we get here” path, but I’m just feeling so incredibly frustrated today, I want to take brief detour into “I’ve got to vent about this” alley before I explode. Let me preface all this by saying I have no patience. None. I am the least patient person you will ever meet. When I was a teenager, I can remember my grandmother saying to me, “You are the most impatient person I know.” If you had to come up with a list of 100 words to describe me, patient would be NOWHERE on the list. I try . . . I really do. And I can hold it together for a while. But eventually, my true colors will come out, and my impatient side will win the day.

We live in NC and this week has been beautiful, with high temperatures in the 70s. The week before, when the Polar Vortex was in play, we had had temperatures in the teens, so 70s in February has been a treat. I’ve been trying to get M out every evening, after work, for a 2 – 3 mile walk. Tuesday night, he was agreeable, but when I suggested it Wednesday, he said “Walk? AGAIN?” as if I had suggested a colonoscopy for fun and excitement. Last night he was more agreeable, but as we started off, there was no talking. Every subject I introduced to start a conversation was met with one word answers. I told every story from work I could think of . . . nothing. And he wasn’t angry or upset – just not engaged. Finally, I said “you know, it’s okay if you talk to me. It’s allowed.” He laughed, as though I had said something funny, but never really got into the swing of walking and talking, the way we used to do. It made me so sad and frustrated to think that this is how my life is going to be now – just dragging along someone for a walk who doesn’t really want to be there.

Then this morning, he came in the kitchen as I was cooking his breakfast (trying to keep him following a keto eating plan!) and asked if I knew what the weather forecast was for the day. I said I didn’t, so he picked up his phone to look at the Weatherbug app. He looked at it for a moment, so I asked what the forecast for the day was. 
M: Let’s see . . . it’s 61 now.
Me: uh huh
M: 61 at 10 o’clock
Me: mm hmm
M: 61 at 11
Me: is it going to be sunny or rainy?
M: 61 at noon
(that’s when I snapped)
Me: okay that’s great. Thank you very much.
M: I don’t know why you get so mad.
Me:
What can I say? All I wanted to know was whether or not it was going to rain today. I didn’t want an hour by hour assessment of the temperature. Honestly, I could feel the frustration run up the back of my neck as he was talking. I know – I know in my heart he’s doing the very best that he can. I really do. And if it were me going through this, how would I want to be treated?

I wish I had the answers. I wish I were more patient. I wish I had my funny, bright, husband who loved to talk to me back. That’s the one I really wish.