Category: The Backstory

(Originally posted in Facebook on February 22, 2019)

There are days . . . and then there are days. I think I’ve taken more deep breaths in the past 24 hours than I have in my entire life. Not sure if it’s helping, but maybe I have plenty of oxygen?

Yesterday turned out to be not a very good one for M. He was in a lot of pain because of the lumbar puncture attempts and stayed at home all day. He also made the decision to NOT try a 2nd time for a successful spinal fluid collection and had me cancel his appointment for today. I left for work yesterday a little before 7:30 am and he called me right after lunch – after 1 pm – to say that his back was really hurting.

Me: Have you taken any more pain pills? 
M: Not since you left.
Me: That was six hours ago. Have you eaten anything?
M: No, not since you were here.
Me: What have you been doing all morning?
M: Well, sleeping . . .

I could tell by the vague way he was talking that there was no way he could pull together the pain pills AND lunch, so I called my dad and he got M a take out lunch and drove it by the house.

When I got home from work, close to 6 pm, it was the same situation. I woke him up and he was in pain because he hadn’t taken any medicine since we had talked at 1 pm.

He did better through the evening, but when it came time to go to bed, I was trying to turn off the TV downstairs. But I couldn’t find the remote for the Firestick. When I asked M about it, he said he had taken it upstairs to the kitchen. He brought it down to me, but it didn’t work – it wouldn’t make any of the channels turn or get out of any of the apps. I changed the batteries – nothing – and finally gave up and turned the TV off.

When I got up to the kitchen, it was a mess. Everything M had touched was left exactly where he had last had his hands on it . . . and I just came apart. Something inside of me broke and I realized – this is how it’s going to be, from now on. I’m going to be spending all my time cleaning up behind him.

I was in tears and called my brother who lives in Charleston. Thank God he was home and answered the phone! We managed to find things to laugh about and I hung up feeling much better about everything. He reminded me that my house doesn’t need to be perfect and that I need to let the majority of my OCD tendencies go. They’re not going to work with everything else that’s going on in my life right now. He also pointed out that living with someone with dementia is kind of like having a teenager in your house again – every day that goes by and you don’t kill them is a victory. (Kidding!!)

This morning I found a second Firestick remote in the kitchen and realized exactly what had happened. M brought BOTH Firestick remotes – one from our bedroom TV and one from the den TV – to the kitchen and then gave me the one from our bedroom to turn off the den TV. This morning, I switched them out and they worked perfectly.

He woke up with a headache and his back hurting again this morning, so he’s still at home, in bed. I have a feeling he won’t be working much longer, and that’s probably best. It makes me so sad to say, but this horrible disease seems to be progressing so very, very quickly. It’s almost as though I can see him changing on a weekly, if not daily, basis.

(Originally posted in Facebook on February 20, 2019)

M was scheduled for his lumbar puncture today and we were very nervous going into the medical center for the procedure. I don’t know why, but this test felt more serious than all the others he’s had. He didn’t have to fast prior to the test and was in good spirits, although his blood pressure was a little high (nerves, I think) before they took him back.

It took quite a while, but it was UNsuccessful. The physician said they tried in three different areas to draw spinal fluid, but were unable to get any. They’re blaming it on the fact that he takes an Aleve every day for his knees, but I don’t know. He still had to lie flat on his back for an hour before I could take him home and is to remain quiet all day.

Now he’s to discontinue the Aleve for the next two days and they want to try again on Friday. At first, I thought he was going to balk and say no – he didn’t want to try again and he was through with the testing. But he agreed, so we’ll be there Friday morning at 11.

On the way home, we decided he deserved a Double Quarter Pounder with Cheese and a large order of fries. Since it’s so cold and miserable today, I think dinner will be grilled cheese and tomato soup. Not very keto friendly, I know. More like comfort food. I think after your spine has been punctured three times, you deserve to be comforted. 

(Originally posted in Facebook on February 14, 2019)

The NEW test that the new neurologist wanted M to take was a PET scan. I’ve read up on the differences between an MRI, CT scan and PET scan. All three of them look at the brain (in this instance) in different ways and measure different things about the way it’s functioning. Google can explain much better than I. With the holidays and getting insurance clearance on the new test – if a physician says you need a test, why does the insurance company feel it needs to weigh in on whether or not you actually do? – it was January . . . yes, an entire year since we began this process . . . before the PET scan was scheduled.

The test itself didn’t take that long – maybe an hour – and we were able to see the neurologist again before the end of the month to get the results. That’s when the neurologist said those words, “early onset dementia.” Of course, they can’t definitively diagnose something like this without doing an autopsy – and THAT’S not happening right now!! So, they look at the brain and see if the areas that should be “lighting” up and active during cognitive processes are actually working and . . . therein lies the problem.

So.

Where do we go from here?

As I mentioned before, M is scheduled for YET ANOTHER TEST – this time, it’s a lumbar puncture (spinal tap) to confirm that there are no rogue cancer cells, virus or bacteria in the spinal fluid that haven’t shown up in the blood work. There is no end to what I wouldn’t give to have something like that be the cause of this problem. Something substantive, something we could attack. I feel as though we’re grasping at straws.

Over the weekend, we went shopping and I picked up some Valentine’s Day candy to give to friends at work. Russell Stover’s has a cute little box of four chocolate pieces for $1 that is the perfect little treat, so I like to give those out. M saw me getting several and mentioned he should get some for the group of women he’s now working with. We bought them and when we got home, I counted out the number he said he needed, put them in a bag and handed them to him – telling him he was ready for Valentine’s Day. I saw him take the bag into the pantry and I thought he must be putting it into his lunchbox to take to work on Monday, so he would have them for today.

Last night, he told me he needed the candy we had purchased to take to work for the women he works with. When I said I had already given it to him on Saturday, he told me – emphatically – that I had not, and that the last time he had seen the candy was on the counter in the kitchen. I started to argue . . . but then I stopped. Instead, I said, “let’s go look for them” and we went to the pantry, where I had seen him take the bag of candy. There, sitting on the counter, was the bag of candy.

It doesn’t matter. The main thing is, we didn’t get into a big argument over it. We found the candy and everyone is happy. So why do I have to make a conscious effort to pull my shoulders down from my ears and relax?

(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.

(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.