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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. 

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The Process Gets Started

(Originally posted in Facebook on February 7, 2019)

After the incident at Christmas with M and the electric candles in the window, I knew we needed to get him to a doctor’s office. But where do you start? Of course, you can’t take yourself to a neurologist’s office – even if you know that’s where you need to be. You have to start with your family doctor or general practitioner and let them refer you. After many dollars have been spent and tests have been run, of course. So that’s what we did.

Each appointment started with the doctor asking why he was there. I went to each appointment to make sure they were getting the complete picture of what was going on. When we told them he was there because we were concerned about memory issues and confusion, each and every doctor said “But you’re too young to have those issues.”

Well, thank you for saying that, but that’s why we’re here. And he had test after test. Blood work, CT scan, MRI . . . everything came back negative.

When he was finally referred to a neurologist’s office, it was probably March or April. By that time, he had also started having severe migraine headaches that had been keeping him out of work for days at a time. I’ve had migraines for 25+ years, but I can count on one hand the number of days of work I’ve missed because of them. Sumatriptan helps me enough that I can continue working. But it wasn’t helping him.

The neurologist gave him a verbal exam during the visit. He gave M three words to remember: ball, yellow, shout. He told M to remember those three words and that after a few minutes he would ask him to tell him those three words again. Then he asked M a series of questions: what is today’s date, what city is this, where did you grow up, who is the President of the United States, how many quarters are there in $3.50, can you count backwards from 100 by 7?

He could answer the questions until he got to the one about the quarters – then he turned to me, as he does when he doesn’t know the answer. I could tell he wanted me to supply it for him, but I just sat there and tried to look encouragingly at him. He also couldn’t count backwards. Then came the time for the three words. He couldn’t come up with those, either.

Again, the neurologist told him that he’s much too young to have these cognitive problems (gee, thanks!) and that he wanted to continue with a series of tests with his colleagues in the practice to get to the bottom of what’s going on. The doctor didn’t seem to be concerned about the headaches M had been having or the amount of work he was missing.

When we got to the car, I could tell M was shaken by the experience and by the questions the doctor had asked. When I squeezed his hand, his eyes filled a bit . . . I don’t remember exactly what he said, but I do remember us talking about the fact that we were going to be together for the long haul – that we had said “for better or worse” and we meant it. And whatever it takes to get through this, we’re going to do it together.

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The Beginning

(Originally posted in Facebook on February 6, 2019)

It’s been amazing to me – and not in a good way – the amount of time, effort and money it takes to get to a diagnosis for someone who is having memory and cognitive issues. And I work in health care.

I had a feeling that things weren’t right with my husband for a while, but it wasn’t anything I could say definitely or put my finger on exactly. There were conversations I would have sworn we had had or things I knew I had asked him to do and he would say I had not, but I always second guessed myself. Or told myself I was over-reacting about things that happened.

Finally, in the run-up to Christmas 2017, as we were decorating the house, M was upstairs putting the electric candles in the front windows and I was in the kitchen getting the timers for the candles out of the plastic packaging. We’ve had these candles in the windows every year as far back as I can remember and the set-up is pretty simple – two candles for each double window, plugged into one extension cord. That cord plugged into a timer which is plugged into the outlet underneath the window.

For some reason, it seems we either use the timers elsewhere during the year or they get misplaced, but we always seem to need new ones each year, so as M was setting up the candles, I was getting the new timers out of that hard shell packaging. After what seemed like an extraordinarily long time, he came down to the kitchen and told me he needed another timer. 
Me: No, you don’t
M: Yes, I do
Me: You couldn’t possibly need another timer.
M: Well, I do.
Me: I know darn good and well you don’t.
M: And I know I do.
Me: Okay, show me.
So we go upstairs to see how he needs another timer for one room and . . .

I wish you could have seen the fire hazard he had set up in our bedroom. He had one candle plugged into a timer, which was plugged into an extension cord, plugged into another extension cord and all this run under the bed and across the bedroom and plugged into the farthest wall from the window.

I just looked at this mess and said “No. What are you doing?” This was before I really understood what was going on with him. There was honestly a part of me that thought he was trying to be silly or joke around. So, we took everything apart and I reminded him that he was the one who showed me years before how to do all this – two candles into one extension cord into one timer.

The really scary part here was – I couldn’t get him to let go of the idea of plugging the candle into the timer until I took the timer out of the room where he couldn’t see it anymore and couldn’t focus on it. Then he could focus on the candles and the extension cord.

Right then I knew – we had a serious problem on our hands.

I guess this has gotten a little long for today. Tomorrow, I’ll continue the story of our slow, arduous path through the health care system.

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Not so simple

(Originally posted in Facebook on February 5, 2019)

Things that are simple have suddenly become not so simple any more. I came home from work yesterday and M told me that he had seen our next door neighbor in her yard as she was picking up sticks. Of course, he couldn’t remember her name and I had to supply it for him. But instantly, I was on high alert.

Had she noticed anything different about him? Had he had one of his “episodes” while they were talking, which would have caused her to have some concerns? I don’t want to ask either one of them, but . . . We’ve known these neighbors forever – he was my high school English teacher! They’re only eight years older than we are, although when I was in high school he seemed 100 years older. Do I say anything? Let it go? Eventually, something is going to have to be said. But when? These are the things no one tells you about.

M called his brothers over the weekend to tell them about his diagnosis. He is the youngest of four boys and we were interested to see if any of them were having any issues like he’s been having. I had written down “early onset dementia” for him, so he would be sure to say it correctly when he was talking to them, and he had the phone on speaker so I could help answer any questions.

I wish you could have heard him.

He gave them no preamble or lead in . . . just jumped right in with “hi, I called to tell you I have early onset dementia.” If it hadn’t been so sad, it would have been funny. They were all shocked, and we found out none of them have any symptoms like M has been having.

The oldest brother, we’ll call him brother #1M, was married (and later divorced) to a woman who also had early onset dementia and was diagnosed at about the same age. She was 8 – 10 years older than we are and has since passed away. I remembered about my former sister-in-law and wondered if living and growing up in the same area of NJ as my husband had anything to do with it. But how do you prove it? And how do you explain that his brothers all seem to be fine?

I think I’m grasping at straws.

When I opened the dishwasher this morning, it looked as though everything on the bottom rack had been put in there by blind squirrels. Even two months ago, M understood the necessary placement for plates and bowls for them to be washed. Now, it seems he just opens the dishwasher and wherever the plate will fit is where it goes. Even last week, I would have called him in there and pointed out what he had done and asked him what he was doing and then shown him the “right” way to do it. “Let it go” has become my new theme song. I just rearranged everything the way I wanted it without saying a word.

What would have been the point? It would have only frustrated both of us.

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A New Normal

(Originally posted in Facebook on February 4, 2019)

A new kind of normal starts long before the doctor says those words . . . “early onset dementia.” I knew the words were coming. I had known it for a long time. Even though my husband, M, has insisted all along that he’s fine and he feels fine and he’s not doing anything wrong.

I knew.

We had started the long procession of doctor’s appointments over a year ago – one after another. It really is the slowest process in the world, trying to get to the bottom of a diagnosis like this. M has gone through test after test and scan after scan. It’s almost sad when you start wishing for a tumor. Cancer is a diagnosis you can understand. A disease you feel as though you can fight. Dementia – not so much.

The week before we went back to the neurologist’s office to receive the results of the PET scan, M had emphatically stated he would undergo no more testing. He had had enough.

And I understood.

I would support whatever decision he made. So when we sat there in the doctor’s office and he said those horrible words – early onset dementia – he also said he wanted to run (of course!!) one more test to rule out any rogue cancer or bacteria or virus that JUST MIGHT be causing these symptoms.

Do I think there might be a cancer, virus or bacteria causing the symptoms that have been getting progressively worse, particularly over the last 18 months? No. But how can I say “no” when it’s my husband’s life at stake? I was prepared for M to say no, but he agreed to the test – a spinal tap, if you can believe it. So now we have to be scheduled for a inpatient hospital procedure – again, hurry up and wait – and throw money we don’t have at this test.

I can remember being in a car accident years ago and thinking “is this really happening?” as my car was being crushed and my head hit the windshield. That’s exactly the way I’ve been feeling, ever since we left the doctor’s office. How could my 56 year old husband have dementia? Is this really happening? I keep waiting for someone to tell me there’s been a mistake – that all the signs and symptoms I’ve seen have been indications of something completely different – something we can cure with a shot or a pill.

Mostly, I just feel sad. And cheated.