My journey as a caregiver
Take a deep breath
Yesterday my LO had a skin cancer removed. It was a long appointment, but eventually we were through it. We then drove home and got him into bed and he slept, watched some tv, and slept again. Barely ate anything. This morning he wanted to get up at 6:30, we decide that was too early, so he went back to sleep until about 9:30. He got up then and on his way to his recliner, he stopped in the bathroom. That’s where he fell into the bathtub. I had to call 911 because I couldn’t get him out by myself, but he refused to go to the ER.
Thats when I told him about what the future with this disease will be like, because I needed him to know the truth just once. But truly I don’t know if it was right to do or not. I know the advice is to let them have their hopes, but I would want to know if I was in his position. So in the end I decided to do what felt right. He has been talking about how things aren’t getting better, I felt he had a right to know why.
I have no plans to repeat that conversation. He will probably forget it ever happened but I feel better for being truthful about it just once.
After the conversation I took Sam (my dog) for a walk, and Carl fell asleep and is sleeping now, he still hasn’t eaten.
A New Day
One of the hallmarks of Lewy Body Dementia (LBD) is the fluctuations. So we get up each morning not knowing what the day will bring. My LO spent 3 days in bed, barely eating, watching some tv, very little communications. Then, yesterday his physical therapist (PT) came, and my LO was up and walking some and getting on the recumbent bike. As soon as the PT left he was back to wanting to go back to bed.
Some of this is depression, some is “showtime” behavior, some is just part of LBD. I know this intellectually, but it is very frustrating.
(Showtime behavior is when the person performs very well for doctors, or visitors, and then as soon as they are gone, they revert to displaying the symptoms of LBD)
It is good to see him able to exert himself but it is also distressing, because I know from experience the aftermath of the exertion is exhaustion.
The back story
My LO has had many health issues over the last few years; a aortic valve replacement, a pacemaker implanted, a-fib, bladder cancer, peripheral neuropathy are just some of the issues. However with all these issues his daily life has been pretty good.
In July of 2022 he got on a plane and flew to Houston for a checkup on his bladder cancer, all was well, but I was worried about letting him go alone, he did fine though, so I didn’t think anymore about it. Unfortunately the day after he got back I took him to the emergency room because he was running a fever, turns out he had Covid. He got over it really well.
Then in September he made the same trip, only this time there were issues. He locked himself out of his room twice, he was awake all night because someone was playing the radio too loud (turns out the radio was in his hotel room). The map I drew him of his route to the doctors office was confusing to him. I arranged a wheelchair for him in the airports because of his balance and weakness problems. This time I was very worried about sending him alone but didn’t have much choice.
While he was in Houston I received a phone call from his cardiologist saying that his pacemaker was sending out some alerts and they would like to see him as soon as he got home.
We went to Columbia SC where his cardiologist is and we’re told they needed to upgrade his pacemaker because the different sides of his heart were not beating in rhythm and he wasn’t getting enough oxygen to his brain. I was a little relieved because the changes I was noticing I thought could be attributed to that and would be relieved by the upgrade.
On December 5th 2022, they replaced his pacemaker.
It didn’t help with the things I was noticing, basically the hallucinations, the confusion, the fluctuations in alertness, the lack of appetite, so we went to his primary care physician and I took a checklist of Lewy body dementia symptoms. My LO had most of the symptoms. We we’re referred to a neurologist and in January of this year he was diagnosed.
Back in September, I went to my doctor for a checkup, I was angry all the time and couldn’t figure out why, in her office I broke down and started crying. She prescribed a antidepressant. I think that helped me to realize what was going on. Once I calmed down enough to step back and look at the whole picture, I realized my LO wasn’t doing these things to drive me crazy, he was doing them because something was very wrong.
My journey as a caregiver
Yes, I’ve stopped painting. Life has decided I need to do more important things. My husband has been diagnosed with Lewy Body Dementia, so now I need to dedicate my time and energy to taking care of him. I do not regret giving up the painting because this is where I need to be now. Concentrating on taking care of my Loved One (LO) is my first priority, but being a caregiver is not always easy, sometimes I need to vent. So this page will be my space to vent. You have been warned! Read at your own risk.