Whackadoodle

Behavior started changing into what we just called whackadoodle. In another time, it might have been humorous. I would try to wake him & he didn’t hear me, so I would get right in his face and ask him what he was up to. He would just tell me he was sleeping or he didn’t feel well.

His normal blood pressure was 90/60 now, but often it dropped lower. He was dizzy when standing and fell down steps, causing the need for a cast.

Sometimes he was really confused. I just thought being in heart failure causes blood not to pump properly and confusion was part of the problem.

The confusion that I was now seeing was disturbing. He had an entire conversation with me after he vomited on his shirt and I helped him get a clean shirt on. He wanted to take off his monitor & kept calling it a t-shirt. On the table was a placemat that I had made using our daughter’s photo. He had that in his hand trying to figure out what it was. He called it a t-shirt. I told him it just goes on the table & it’s not a t-shirt. He would ask “it’s not the red tshirt?” No, we already put your red t-shirt on. “I threw up” as he attempts to take off his monitor off again and take off his t-shirt. No, we already changed. This placemat is of Kalina. “Kalina?, is she here?” No, just put the placemat of Kalina back on the table. “Ok.”

Something isn’t right, but is it life threatening? Do we need to be checked out?

Many times I took him to ER, as it was usually at night, to ask if his electrolytes were off. Being on lasix, and other diuretics, even though it’s potassium sparing, he still had low potassium & low electrolytes before. If the staff could not find anything wrong, per se, they assumed he had too much pain medication for his chronic pain.

Every time I explained that he does not have access to any narcotics. They are in a safe that no one in the house has the code. I hand him his medication every day and watch him swallow.

I guess since the heart doesn’t pump correctly the medicine doesn’t metabolize like it used to.

Sometimes he’s dehydrated or needs admitted. Twice he had bilateral pnemonia without any coughing or any other symptoms. I usually trust my gut when I feel something is not right.

Other whackadoodle things were just opening up the refrigerator and drinking out of bottle of creamy Italian salad dressing. (Gross, I don’t like that dressing). I asked why. He answered that he was thirsty.

He sleeps in a recliner & I’m in my bed. I keep my door shut. Lloyd would knock on my door at all hours of the night waking me up. He was ready for breakfast at 1 a.m. then it was…Hello, I didn’t get my dinner and I’m hungry (it’s 3 a.m. & he ate at 6 pm had a snack at 9 pm).

The best (?) one was the knock at 3 a.m. that asked me to help him with the plumbing in the basement because we had a leak. It was raining out, so this was a probable legitimate thing. I went to the basement and it was obvious he’d spent some time down there moving my full 5-shelf storage rack from the wall. It was now broken & everything on the top two shelves needed to come off before it all came crashing down. The armoire with my extra clothes was moved out from the wall, and all the dirty laundry was in the middle of the floor with a hose from the garage on top of everything.

I asked him what was the problem. He told me we had a leak from that pipe & it needed fixed right away. The “leaky pipe” was coming from the dryer which was right beside my shelves.

I thanked him for getting started on this project and said I think we’ve got it stopped for right now. I turned him around and up the stairs we went. I calmed him down enough to go back to bed. The next morning I put it all back together, secretly crying to myself, especially after he came downstairs and apologized for making the mess that he didnt even remember making. Not his fault.

Whackadoodle at 5 a.m. on a Saturday morning was waking up to a loud, really loud, beating of something in the house. OMG, someone is in the house! I jumped up to find my husband beating our living room wall with a hammer.

He needed to get the phone line out of the wall (it’s not in that wall). I take the hammer & hide it. Redirect to bed. We have no schedule today & I’m too tired to start the day.

Our college child had been kept informed of what was going on. Back for holiday break & I was gone, Kalina volunteered to stay home with dad.

The Lifevest is still supposed to be worn at all times, but he started to hate wearing it. He took it off in the middle of the night and we could hear it beeping & have to wake him up to put it back on him.

This day, Kalina could hear the beeping, so she followed the beeps. Opened up the refrigerator & low and behold found a very cold Lifevest. The LifeVest representative advised me to replace the belt since we didn’t know how long it had been in the cold or what the condensation would do to it. LifeVest rental cost $3,500 per month.

Behaviors continued with an early morning wake up knocking coming from outside. At first I thought it was just the wind banging our shed door. It was relentless and at predawn I might as well go close the door so I can go back to sleep. I was surprised to see my husband outside in his boxers, no coat or shoes on a very cold morning banging on the house with a plastic tote. The door was unlocked, so it wasn’t that he was locked out.

I said, hey it’s cold out here. Come on in. He just had a weird spaced out look on his face & repeatedly said “I’m okay.” I brought him inside, wrapped in a blanket & tried to assess him. The only response he would say was “I’m okay.” I again called the ambulance even if we are so very close to the hospital. He was again admitted. Possible seizures.

I started having a really hard time getting all my chores done for several reasons. When I came home from work, I usually sat down & immediately had a nap. Too many sleepless nights were catching up with me. I fed my family, then started laundry. I was usually interrupted by a crisis and then never allowed to finish a task. The living room was quickly becoming our holding room for clean, folded laundry that never got put away. That’s how it was on this particular morning.

At work, my cell phone rings and it’s my distraught husband. He has had to get off the ladder to talk with me. “She” hasn’t come back & maybe she’s just gone. I had to ask who “she” was. He insisted that I knew because Bob sent her. SMH, but I have clue what he is talking about. I had to keep asking to determine that a lady was helping paint today. She’s gone, he cannot find his paint or roller.

I leave my work to go home to find all my laundry in the middle of the floor with a step stool (one step, not a ladder) to the side. My husband sitting on the couch just looking so miserable because he has lost his roller and paint. “It’s perfectly fine, but look down on the floor,” I said. “Do you ever remember painting on my clothes like this before? We need to not paint today since I have all these clothes on the floor. Deal?”

He was okay with not painting & I guess continuing to leave laundry in the living room has worked as we’ve had no more painting episodes.

The one that finally got me to realize just what I was dealing with was when I walked in the house & saw a drill in the kitchen, extension cord plus a couple of drillbits. Lloyd walked in from the garage with a different drillbit. I asked him what’s up. He said he needed to make some holes in the floor over by the sink cabinet today. He could not remember why.

The drill, bits & extension cord all lived in my car for a long time.

The neurologist diagnosed dementia in December 2018. There had been an extensive evaluation in November when he was sent by ambulance to a Neuro intensive care unit. I was eating Thanksgiving dinner with my girls at the KC Hall when the hospital called to tell me he finally woke up from the medically induced coma to prevent continuous seizures.

I documented, took photos and video. The MRI showed atrophy to his frontal and temporal lobe.

Given the MRI & symptoms plus his young age of 62, the doctor said it was behavior variant frontotemporal dementia. After researching this type of dementia, the kids and I believe the symptoms started in 2015, but we didn’t know what was wrong then

So many out-of-character things make more sense now.

His MMSE score for cognitive evaluation has consistently been 18, dropped to 15 & most recently 21 after pain med adjustment.