On Tuesday I received a panicked call from my daughter. She told me to come home right away. Thankfully my school district is very understanding when those rare moments come up and I need to dash home. For that I am so grateful.
For MY 53rd birthday, my favorite man bought himself a 55 gallon fish tank. It’s been a longstanding family joke and it always makes us smile. Let’s just say that dementia patients should never have free access to a debit card! Weekends are often spent frequenting the local fish store and he has quite a collection. Most do not have names. However, we have a few that he enjoys more than the rest. For example, there is the white catfish that he saved from bullies that chewed off his whiskers, the Pleco who hides in the castle and rarely comes out, and the two orange and black striped fish that settle onto the leaves of one of his decorative flowers. He often spends hours watching the fish while I’m at school, listening to old music videos on the big screen.
This week my favorite man decided to clean the tank without me. I asked him to wait, but he doesn’t wait well- he never has. Moving fish over into a holding tank, he emptied the nasty water and cleaned out the tank. He was exhausted when I called to check in at noon, and I tried to get him to wait until 4:00. I urged him to nap. He refused, worried that the fish were overcrowded, wanting to get them back to the larger tank.
Tired dementia brains make big mistakes.
He hooked up the hose to the warm water in the laundry room, somehow flooding the floor twice. My daughter was a trooper, telling her father that she needed to wash the floor anyway. He filled the tank and checked the temperature. He thought, “Wow! That is WAY too hot.” Then he started putting the fish in the tank. Exhausted, he sat in his chair to watch his fish begin to float to the top of the tank. He wondered what was happening and thought that maybe they were having a hard time adjusting. The thermostat on the tank was blinking RED. He said he wondered why it was doing that. It is always green.
All of a sudden, he realized that his fish were boiling to death. He became panicked. He felt terrible, crying, telling the fish how sorry he was, and that he was a terrible fish Dad. Our daughter sprung into action, helping him to cool down the tank with ice, ice packs, and even frozen packaged meat. As my husband placed his hands on his face and sobbed, she called me to come home.
As I drove, I thanked God that it was just fish that I was rushing home to. He kept people out of my way so that I could safely go as fast as I dared. SItting in his chair with a tear stained face, he kept saying that he was sorry, that he knew better, that he didn’t know why he did it, that he was a terrible fish Dad, and that he hoped that his fish knew how much he loved them. God gave me the strength not to cry. He reminded me of my morning devotions that instructed me to listen, not give advice, and to “lean in and feel his hurt”. So that’s what I did.
I am so grateful for my daughter who is gifted with compassion. She is a natural caregiver, who loves deeply, reads her father like a book, and is all I could ever ask for in a caregiver. Without her, I would not feel comfortable leaving him. How would this have looked if he were home alone and I wouldn’t arrive for a couple more hours? I thank God for the sacrifice that she has made to care for her Dad so that I can continue to work and not worry.
I’m grateful that she called, calmly filling me in, helping to get everything settled, then tagged out, so that I could console my sweet man. Thankfully, we saved about 26 fish, and although we lost a few of his favorites, his Pleco survived to return to hide in the castle for another day.
Most days, thankfully, are not like Tuesday. Most days are just fine, but the bad days are generally pretty awful. That’s when I am reminded that this dementia-thing isn’t going to go away. In fact, it’s going to get worse. That’s when I start to feel myself go into a slump. I self sabotage with food choices, overeat junk food, and feel like crap. I don’t understand my thinking, “I am an emotional wreck. I’ll just eat some junk food, feel sick, and put on some extra weight so that my clothes are too tight. Then I can REALLY feel terrible about myself. Really Cindy?”
On awful days, I try to reach out to a few people. However, it takes a lot out of me to write it down and respond by text to very many. There are just a handful of people in my circle who I think really care enough to know. I don’t mean that in a bad way. It’s just a lot and I get it. I am thankful for those that ask how I am and actually stop and wait for an answer. I particularly enjoy the thoughtful gestures. On Wednesday, a coworker presented me with an iced tea and it truly made my day. It’s nice to know that I’m thought of.
When things like this happen, it takes a lot out of my favorite man. It often takes many days to return to baseline. His brain becomes overworked, put into crisis-mode, which leaves him unable to speak making word retrieval a huge challenge. Wednesday night, he couldn’t even formulate words to pray for a friend. He generally reverts to staring, playing with fidgets, and rocking. Even his favorite red-head struggles to pull him out of the fog.
Sometimes I feel lonely, although I’m not alone. My heart hurts and I don’t want to bother anyone because I don’t want to bring anyone down. I’m thankful for my colleagues at school, although I don’t see many of them now that we do online meetings. I miss them. I have really great friends and family that I love very much that I haven’t seen or heard from for a very long time. I get it. They have their own busy lives. I just miss them. The good news is that my husband has returned to going to church since the quarantine. It’s a lot easier to navigate in a church that has reduced it’s numbers so drastically. The bad news, is that there are members that we haven’t seen for a very long time. We miss them.
People tell me that as his diagnosis progresses, it is important to take care of myself. I’m not really sure how to do that. I suppose that leaving the junk food alone might be a good start. I’ve started putting smiley faces on the calendar on days that I’ve taken good care of myself. So far, I’m up to two. My favorite man has always enjoyed a drive and a car wash. He still enjoys the drive, but is becoming less and less tolerant of the car wash. It is simply too loud and too stimulating. Today I am going to bring a pair of noise cancelling headphones with me. He’s bought a wood burning machine that requires a computer with Windows compatibility, so we may need to find a cheap computer to use in the shop. I just can’t say “no” to the man, although I pray that it isn’t too complicated for him.
The good news is that after three days, my favorite man is starting to return to his old self, which will make me feel better, and in turn, I just might get another smiley face for the calendar on the refrigerator. Today I thank God for the good days and for a Heavenly Father who holds my heart on the bad.