It’s been a while. I came back to blogging with good intentions. I wanted to share things to help you improve your physical, mental, and spiritual health.
And then I dropped the ball.
Some of my regular readers know me in real life, and you know why my blogging has been on and off again. For those of you who don’t know, it’s time that I shared my current challenge.
My husband has dementia, or at least that’s the latest diagnosis. He showed his first symptoms about 7 years ago. His symptoms aren’t the typical ones you think of when you hear dementia. Yes, there is some short-term and long-term memory loss. And that was probably his very first symptom, but in his case, it’s coupled with mood, personality, and behavior changes. Which cover and outweigh the memory loss.
About seven years ago, there was an incident between us that made it obvious there was something wrong with his memory and his impulse control. I insisted he see his doctor, and he did. They ran a boatload of blood tests, did an MRI, CT scan, psych eval, depression screening, and a bunch of other things, and came back with “yep, there is something wrong with your brain. Go see a neurologist”
That’s where the whole thing stopped. He had forgotten to sign up for medical insurance at his job, so we were paying for all of this out of pocket. But, even though our medical bills were paid in full, there was not a neurologist in the state who would see him as a self-pay patient. No, seriously — I called every single neurology office in our state and several in neighboring states. Everyone refused to see us because he didn’t have medical insurance.
Meanwhile, his symptoms came and went. Got worse and got better. We went to the emergency room several times for weird, scary symptoms. We saw local doctors hoping something would help. And those local doctors all gave us different answers. One doctor insisted my husband was having some sort of seizure. Except that doctor did absolutely no EKG testing. When I asked for a walking EKG he stopped just short of yelling at me. My husband tried the seizure med and when it made him significantly worse he quit taking it, and refused to see that doctor again. Another doc insisted there was nothing wrong with my husband, and instead put his focus on me. Except that I wasn’t the only one to see and be impacted by my husband’s behavior.
Actually, that particular doctor did convince my husband that the problem was in my head. And, I suppose that I’m thankful to him. That’s when the kids and started keeping independent lists of odd and out-of-character things my husband did. We also kept track of things he forgot. I talked to his co-workers and asked if they noticed anything. And boy did they ever!
We took my list, each kid’s list, and the list from his job and did what one might call an “intervention.” Presented with information from his family and people he worked closely with, my husband couldn’t continue to deny there was a problem.
The next time we went to a doctor I took those lists with me. It was an ER visit because his behavior that day flat out scared me. He was.. different somehow. Not right. Not himself, and kind of agitated. For the first time in over ten years, he scared me. He saw that I was upset and concerned, and agreed to go to the ER with me. I talked to the dr about his current symptoms and then presented him with our list.
The ER doc was kind of a jerk about it. Actually what he said to me was, “Dementia is not an emergency. Get out of my ER,” and then sent us home. He didn’t even examine or talk to my husband.
Flash forward five years to Jan. 2021.
The memory problems were getting worse and he was having trouble retaining new information. He had left his previous job because he couldn’t do the super tech stuff anymore. The new job was still in the tech field, but it was more customer support, and less fixing things and programming.
I suspected he had been struggling to learn the new job, but my husband insisted everything was fine. Except it really wasn’t. He became angry and frustrated. He started avoiding going to work. He was working from home (this was before Covid) and was not getting up early enough to get to work on time. It was obvious to me that he was avoiding his job. I offered to help because I knew from past experiences that he was struggling to learn new things. He insisted he didn’t need help. At some point, I stopped asking because I was tired of being snapped at. Both of our teenagers agreed with me that it seemed like their dad was having the same trouble in the new job, as he had in the previous one.
Then, our 14-year-old daughter was accepted to her first choice college. The school is two hours away from our home. We decided that she and I would take our RV down to the college town, and stay in an RV park there while my husband and 18-year-old son would hold things down at home. Our daughter and I came home most weekends.
That blew up on us. Classes started in August. By the time our daughter’s first semester was over in November (semester cut short due to Covid) my husband had lost 25 pounds, and his attitude, temper, ability to have a conversation with me or our daughter, and his hygiene took a serious nosedive.
When our daughter and I went home on the weekends my husband would either argue with me constantly or flat out pretend neither of us existed. It was a really rough Thanksgiving and Christmas break.
When it was time to go back to the college town in January, I suggested my husband come with us. He agreed.
We were one week into the semester when I came to the realization that he was completely unable to do his job. And it came out that his boss knew it too. She had been telling him for months that he wasn’t meeting minimal requirements and if things didn’t change he’d be fired.
Now… for those of you who don’t know my husband, let me explain something. The man is brilliant. He was THE programming “go-to guy.” I’ve seen him come home on Friday and say he needed to get a book on programming language X for a work project. We’d go buy a book, and he’d spend a few hours messing around with it. On Monday morning he would go into work and know and understand enough of that language to solve the client’s problem and do whatever needed to be done.
The customer support job he was in should have been easy. In years past he would have picked up their support applications in under a week. But over a year later he was still lost. It was time to go to his boss and ask for a transfer to a less technical position.
Instead of a transfer, he got fired.
And, I suppose that wasn’t a bad thing. He had just lost his job because of the memory loss. He couldn’t deny it was a real problem, and he was finally willing to take it seriously. I was able to get him on VA medical and begin getting a solid diagnosis.
I say solid diagnosis, but really, they still aren’t sure. At this point, he’s seen close to a dozen doctors. One memory team is certain he has Frontotemporal Dementia. His primary care dr says dementia, and his psychiatrist says “probably dementia.” The neurologist says no because his MRI looks good, but she doesn’t have any other or better suggestions.
So, for now, I’ll call it FTD.
What’s that mean for msquill?
It means that I am even more passionate and determined to help YOU take control of your health and wellness. It means that I will be visiting your inbox more. Because my passion is teaching people how to use the gifts God has given us to live our best, most healthful lives.
I have some new things in the works, and you’ll start hearing about them soon.
Until then Blessings and love.
(note: We’ve discussed this before -feel free to substitute Spirit/Nature/Universe/whatever you call your higher power. I use God and Spirit, but I believe each person has their own connection with the Divine. Call it whatever you want)