Wife, Mom, Retiree, Non-Profit Executive, & Caregiver
Caregiver
Age: Early 70s
Care Role: Primary caregiver. Lives with Loved One.
Loved One
Relationship: Husband
Age: Early 80s
Diagnosis: Vascular Dementia suspected
Progression: Lives at home with is wife; diagnosis in progress.
Early Signs
We are early on in this process. It's probably been about a year. I’d say to my girlfriends “he’s just weird.” He didn’t understand things. He didn’t pay attention. I thought it was hearing. So we got hearing aids. Before COVID, when we would be out and someone would ask him something, he would say something that wasn’t related. So I thought he hadn't heard them.
In August, we stayed with a friend for two weeks. She runs a big city’s special education program. She was in the process of training teachers for special education COVID schooling. She was better able to identify what was going on with my husband. She was the only person to see him consistently for two weeks and she has experience with some of these issues. She said to me “You need to get testing. He is confused. It is possible he is having strokes.”
Getting a Diagnosis
My husband saw a neurologist and was diagnosed Monday with a neuro cognitive disorder; it is affecting the frontal lobe. The doctor suspects Vascular Dementia. He said possibly from strokes or proteins in the brain . My husband is a lifelong smoker. I worked in the health field. I was able to see a top local neurologist who is a personal friend; he knew my husband at full capacity. He has a significant deficit in language but no behavioral challenges. He’s very compliant. The doctor ordered an MRI.
We got the neuropsychology evaluation on September 1. It took two weeks to schedule. We got an 8 page report saying he was having problems with executive function, language skills, sequencing, and planning. So we went back to his primary care physician.
His physician was hard. He said “You have dementia. You shouldn’t be driving. This will get worse. There is no treatment. You need to accept this and start looking for care options.” My husband told him he was talking too fast. When we got home, his brother called and asked what happened at the doctor. My husband couldn't remember. I said “he said you have dementia.” He said “really?”
I thought the doctor was probably wrong. Because there are normal days. Today is fine. We can have normal discussions about normal things. We discussed what to do about the kids at Christmas and what we are going to do for the holidays next year. Then something happens and I realize they are not wrong.
Telling People
He doesn't want me to tell anybody. He was upset I was talking to my sister about it the other day. "How dare you talk about me behind my back.?"
I told the four neighbors, one on each side and then across the street. They can send him home if he goes over there. I told them if the car is not there and they see doors open, they can come close them. I gave them the code to our house. The neighbors said --”whatever you need. Don't worry about it. We can come and sit with him.”
Activities
He watches TV. He was an avid reader. He doesn't read anymore. He can read a note.
I try to steer him away from the news channel. He will get so upset about the news he knocks on the neighbors doors and tells them about the latest political news. The news really causes anxiety. Monday, after I had pulled every favor to get the neurology appointment, he said we couldn't go because of COVID. He said COVID was everywhere so we couldn't go. I don’t disagree that COVID is everywhere but we were going. His fear is enormous.
He will come to dog shows with me. He won't walk the dogs but today he did because he knew my back was hurting. He will sit in a chair in front of the TV. He won’t walk. I have difficulty getting him to go for a ride. I got him down by the water a few times wand we had a hamburger outside. But boy, it's hard.
This summer, we were on a trip. He had classic sundowners. I had not seen that at home. He got up in the middle of the night and went into the closet and couldn't get out. I was scared. I’m alone. So I packed up everything. In the morning I said “we are going home.” And he got in the car and we went home. It was a long drive and I did it all myself.
I drove to my friend's house. We’d stayed there recently and I thought he’d be comfortable. Every night at dinner he spaced out. He put food into his mouth but it was falling. He picked up the salt shaker to drink from it. He tried to eat a napkin like a slice of bread. He didn't hear anything. He seemed catatonic.
We gave him his medicine at 7:30, said “oh, it's so late,” and put him to bed for the night. He’d sleep 12 hours and the next day he’d be fine. He reached a limit. His brain was done. Then he went to sleep and reset.
Since we got home -- about a month ago -- I haven’t seen any more of that odd behavior. I think being in a place that is familiar, where the routines are all the same, is very good. Oddly, I think it's a benefit of this COVID time. I don't go out like I used to, I’m mostly with him.
Driving
He is very compliant. He wants to drive and his technical skills are excellent. He used to be a driving instructor and he had a race car. He was a firefighter, an EMT. So he drove an ambulance and fire trucks. There’s amazing technical skill. He gets a little confused with directions. We live off the mail road and he’s good driving up to the Walmart or pharmacy. I noticed he doesn't drive anywhere else. His brother lives about an hour away and he doesn't talk about driving there.
He hated me driving before. He always said my driving was terrible. For some reason, my driving has considerably improved this year (laughing). He’s comfortable with me driving. I bought a new car this year -- he loves it and he knows its my car so he is comfortable getting in the passenger seat. He wont let me sell his car. He visits it in the garage.
Wandering
We went on a trip a few hours from home. He was picking up food but never came back to our hotel. I panicked. After running to the restaurant, questioning them, and running around on the street, I found him walking down the hallway of the hotel next door.
We live in a nice neighborhood. There are a lot of us who walk dogs. So I told the people I see when walking that” if you see my husband and he looks disoriented, please walk him home.” Everyone said “of course!” He would be mortified if he knew that basically everybody I know in the neighborhood knows. It's a mile from where we live to the gates to get out, so I think if he wandered someone would find him before he got in danger. In the future, I’ll have to think about tracking him. He’d pass a lot of people before the gates and he really doesn't wander. The one thing he does is run to tell the neighbors about what he saw on the news, sometimes confusing the news with a true crime show he watches (laughs).
I gave him a bracelet with his name on it, my phone number, and our address. He’s good at wearing that and he understood why. I didn't tell himI told the neighbors. He would have been upset.
Personal Care and Day-to-Day Stuff
He doesn't try to cook anything he hasn't tried to prepare meals he doesn't go to the stove or good. He can still do the laundry. He makes himself a cup of coffee. He will make himself a peanut butter and jelly sandwich if I remind him to eat. It doesn't occur to him to eat. He lost weight. He’s 130 lbs and 5 ‘10. He used to weight 170 lb. He’s very physically fit very strong. He's 81. He was a fireman.
Caregiver Health
I have been doing dog shows for five years. It's a community. I see the same people every week. I don’t do nights anymore because of my husband but I go on weekends. You don't talk about anything except your dogs. There is no politics, there's no COVID. You just wear a mask. You socially distance. We can talk endlessly about tiny details about our dogs. It's probably equivalent to having a kid in gymnastics.
I don't feel scared. I feel okay, if I need a plan, I could figure it out. But my daughter has been stationed overseas and she is coming back to the US this year. I can’t figure out how we will spend time together. Will he be able to travel? If we went for a month or two would he settle in after a few days? Or could someone stay with him while I went? What if we went and it was a disaster, would we come back? know it's a minor issue compared with what so many people are facing but it is my issue now.