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Just Breathe

(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.

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Snack Time

(Originally posted in Facebook on February 21, 2019)

Last night wasn’t a ton of fun. M was in a lot of pain from the three attempts to draw spinal fluid and the only pain reliever he can take is Tylenol. Unfortunately, it didn’t seem to help much. I had hoped he would feel well enough to go to work today and get his mind off of it, but he didn’t. And now, we’ll try again tomorrow.

The grilled cheese and tomato soup last night was a big hit. I don’t think the temperatures got out of the 30s yesterday, with a steady, cold rain, so hot soup and a sandwich was a perfect dinner. M’s limited movement last night really pointed out how much his appetite has increased lately, because he was asking me to get him more and more things to eat all night long.

I noticed, when I started getting up with him and cooking his breakfast every morning, how much he was packing to take for his lunch to work every day. He’ll make a sandwich with turkey deli meat and mayonnaise, then pack two 4-oz. applesauce cups, 2 of the large P3 portable protein packs (they have a meat, a fruit and nuts) 2 bottles of muscle milk or another protein drink, 2 Atkins bars and 2 bottles of sparkling water. And every bit of that is gone by the time he gets home.

He’ll eat a good dinner and then snack constantly until bedtime. If I say anything to him, he tells me that he’s hungry.

He’s heavier than he was a year ago, but just by five or so pounds. I’m glad he’s eating relatively healthy things, but I wish he weren’t eating so much of them. We can’t have ice cream or any kind of sweets in the house because he’ll start digging into them – and that was never a problem before. 

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Lumbar = DQP

(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. 

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Time – NOT on my Side

(Originally posted in Facebook on February 19, 2019)

One of the biggest changes for M has been his relationship with time and getting himself up in the morning. Last year, through the spring and summer, there were several days when M would tell me he had been awake during the night and had looked at his alarm clock, but had been unable to determine what time it was. He’s always been the type of person who liked to wake up before the alarm goes off. He’s never likes the sound of the alarm – whether it’s a beeping sound or music – and he wants to avoid hearing it, if at all possible.

He also has a prescription for glasses – not just readers, but bifocal glasses – and he REFUSES to wear them. He will wear them to drive, especially at night, if I insist on it. And he will wear them to read or to do a task that requires he see something very small and detailed. But other than that – no. If I ask why, he tells me that he doesn’t need them, that he can see just fine. Never mind that an eye doctor has determined that he CANNOT see just fine and has prescribed these glasses for him.

So when M told me he couldn’t figure out what time it was when he looked at his alarm clock, my first thought was that he couldn’t see it . . . he didn’t have his glasses on. So we bought a clock with bigger numbers that he couldn’t miss. But that didn’t stop the problem. Then he started getting up during the night and, even though he could see what the numbers were on the clock beside the bed, he would go down into the kitchen and confirm the time on the clock there – as though he doubted the time he was seeing in the bedroom. There were a couple of times he got up and got himself dressed for work before he realized he was several hours too early.

What made it a problem for me was that he was waking me up every time he got out of bed to check the time. I’ve become a light sleeper in the last five years or so, and his nightly walks around the house were starting to interfere with my sleep. Finally, in the fall, I made a deal with him. I agreed to set my alarm for 5 am – the time he needs to get up. I promised to get up with him and prepare a keto diet-friendly breakfast for him and get him out the door at 5:30, in plenty of time for work, if he would promise to stay in bed and not worry about the time during the night.

So far, it’s worked out pretty well. We’ve been doing this for about six months and, in all that time, he’s only asked me what time it was during the night twice. And I’ve forgotten to set my alarm just once. Fortunately, I woke up at 5:10 that morning, so we were okay.

Something funny happened this past weekend – my youngest brother and his family were visiting us and their youngest daughter is two. At some point during the night, the daughter started crying and M said, “Honey, the baby is crying.” I told him, “Yes, and she has two parents in there who can handle it.” Although I’m sure they would have appreciated it if I had gotten up and taken care of their child for them!

I try to be a good hostess, but there is a limit! 

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Changes

(Originally posted in Facebook on February 18, 2019)

The changes that have happened with M have been subtle over time – almost imperceptible. It hasn’t been a situation in which one day he was able to perform a task and the next day he wasn’t . . . it’s more that he has slowly begun to do things differently and, by the time I notice how much things have changed, an entirely new pattern of behavior has been established. But if I mention the change, he becomes very defensive about it.

Case in point – lights in the house. Almost every room in our house has overhead lights, but we seldom use those lights because we have lamps in almost all the rooms that we use instead. We’ve always preferred the softer light from the lamps to the harsh light from the overhead light. However, in the last 3 – 6 months, whenever M walks into a room or hallway, he will flip the overhead light on. And leave it on. He NEVER turns them off. He gets home from work about two hours before I do and it’s not unusual for me to drive home and see our entire house lit up like a Christmas tree – every single overhead light in the house on. For a while there, I would say something, like “Do you still need the light on in the pantry?” or “Is it okay if I turn the light off in the bathroom?” and he would tell me he hadn’t turned them on. Now, I don’t even bother mentioning. I just turn them off and go on with what I’m doing. There’s no point in getting upset about it, but more than that – there’s no point in upsetting him about it. He genuinely doesn’t remember turning the lights on and he can’t tell me why he does it. Why start an argument about it?

Just last night, we had turned off all the lights in the downstairs family room and I was in the kitchen of our split-level house, getting the coffee maker set up for the morning. He was upstairs in the bedroom but then went back down into the family room for a minute. When I left the kitchen and walked by the stairs, the overhead light in the family room downstairs was on and he was upstairs in bed. I just sighed and went downstairs to turn the light off. I’m sure I needed the steps.

Another thing I’ve noticed is that he’s tired ALL THE TIME. He wakes up tired. He goes to work tired. He’s tired when he comes home and when he goes to bed. He’s always been able to fall asleep quickly. I once timed him – from the moment he said “good night” and settled down to the moment he was breathing deeply and I could tell he was asleep, it took 40 seconds. I WISH I could fall asleep like that!! But now, it doesn’t matter how much sleep he gets or how busy (or not busy) his work day is – he is ALWAYS tired. He’s asleep most afternoons in front of the TV when I get home. He’s taking a multi-vitamin and B12 supplement and there’s nothing else that should cause him to feel this tired all the time. This is on my list to talk to his doctor about at our next appointment.

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Post-Valentine’s Candy Coma

(Originally posted in Facebook on February 15, 2019)

Yesterday was Valentine’s Day and, although we’ve never been big on the candy and flowers celebrations, cards have always meant a great deal to M, so I make sure I get him at least one VD card to open. I have forgotten, in the past, and have been one of those cliche’ people, twelve deep in the card aisle on the big day, trying to find a card in the picked-over remains. I had a cute one, along with a little Reese’s peanut butter heart, so I knew he would be happy. When I got up yesterday morning, there was a card waiting for me. On the envelope, he had written “Happy Valentine’s Day! I love you!” On the inside of the card, he had again written, “Happy Valentine’s Day! I love you!” I smiled when I saw it, but when I recounted this to someone at work later, it made me start to cry. Not that I need my name or his signature on the card – we know who we are. But it’s just another sign that things are changing.

Earlier this week, I saw an elderly friend who lost his wife several years ago to Alzheimer’s disease. I had not seen him since we received M’s diagnosis, so I was glad for an opportunity to talk to him about where we were in the process. He told me that one of the first “symptoms” was his wife’s resentment of the time he spent in the morning reading the Wall Street Journal (about an hour and a half) because it took him away from her. He asked if I had noticed any behavior like that, and I said no – M doesn’t care if I’m reading or in another room.

But after he planted that idea in my head and I had time to think about it, I realized that I am seeing that same behavior . . . just in relation to different things. Earlier this week, I had to stop on the way home from work to buy gas and it made me later getting home than usual. M called me when I was almost in the driveway to ask where I was. I was only 10 minutes later than usual. If he’s watching something on TV that I’m not interested in or I want to be by myself for a little while (I value my alone time!!) I’ll go upstairs and turn on the TV in the bedroom. Ten minutes won’t go by before he’s up in the bedroom, watching TV with me. And I’ve noticed that, if I go to the bathroom, he will walk by the bathroom door to see where I am.

I really didn’t put all that together until my friend asked me about it – but, of course, now that I’ve noticed it, I’ll probably start noticing more things. When I realized all this, I felt annoyed and overwhelmed by how much M has taken over my life. But then it all just made me feel sad. He says he feels fine, that he doesn’t notice any changes and he thinks I’m over-reacting to tiny mistakes he makes. I truly hope that’s how he feels and that he’s not scared. I’d rather have him go forward, oblivious to what’s happening, than frightened by it

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PET Scan Doesn’t Mean a New Dog – Darn It!

(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?

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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.