Linda and Harry

“[The hardest part is] knowing that there are illnesses that do progress and that the time comes where you can’t help anymore and you have to let go.”

Clarinda “Linda” Hayden shaves Harry Hayden’s beard after his bath. Linda got the tools from her daughter to give haircuts to her family during COVID lockdown.

The first thing you notice when entering the Hayden household is the lack of AC. Harry’s blood circulation is too weak to keep himself warm so the thermostat is left at 80 degrees. Even then, without a shirt on Harry starts to become cold quickly. The muted TV sits front in the center in the living room with black bar captions scrolling past. Harry hasn’t had good hearing for a long time, but now it's hard for him to even wear his hearing aids so the TV remains silent. 

Going back down the hallway is the room where Harry sleeps. He gets tired fast and sleeps for around 12 hours a day. Doing physical activities that to most would seem simple, walking around, getting up, stretching, putting on a shirt, exhausts Harry quickly. In between his daily routines and needs he will frequently leave to rest, and take a quick 30 minute nap before his next venture. 

Harry can no longer dress himself, no longer feed himself, he is able to move with a walker and, with immense strength, sometimes on his own, but almost every aspect of his life needs to be watched over and supported. The person with that responsibility is his wife of over 60 years Linda. 

After Harry’s stroke his health started to deteriorate as more and more problems emerged. Harry was recently diagnosed with Parkinson's disease which is where the majority of his physical limitations stem from. It causes stiffness in his body, which makes it hard to put a shirt on. Tremors or shakiness across his body make it hard to hold anything with his hands.

Linda has thus been thrust into the role of at home nurse or caretaker for Harry. Since becoming his caretaker she has had to become an expert on how to properly care for Harry’s health.

“Facebook groups have been so helpful. I can ask a question and get a reply from someone else who has gone through or is going through the same thing as me,” said Linda. “I just read Micheal Fox’s book. He has Parkinson’s. He's done a lot of support for people with the disease.

Linda’s daily routines now revolve around Harry’s health, she has to Zoom into church where she would previously go in person. She has to feed Harry on a schedule, where if she is off by a couple minutes she may have to wake up in the middle of the night to feed him. She has to drive him to the hospital for check ups or when there is a serious problem. She has to dress, bathe, shave, clean and be on call if he were to fall or get into a coughing fit, but in spite of the immense responsibility and pressure she enjoys being his caretaker.

“For over 60 years [Harry] has been a wonderful provider, a loving husband, a good father and hopefully a good grandpa,” said Linda. “For all those years he's taken care of us, and now it's my turn to help take care of him. It just gives me a real good feeling.”

Linda dresses, massages and puts in Harry's hearing aides after his bath. His shoulders lock up and make it hard for the shirt to get over his head. Because he gets cold so fast she tries to get it on as fast as possible.

Linda feeds Harry with a tube inserted into his stomach. First she pins up his shirt with a clip so it doesn't get in the way while she feeds him. She has to make sure the pad on his stomach where the tube is inserted through is well sealed and dry. Then she flushes his system with water. After the flush she can start feeding him the smoothie-like formula that is “priceless.”

“Any sudden movement, or cough, or gas could cause the liquid to go back up the tube. Something small like that could make a big mess and waste all that liquid he needs so we try to be extra careful,” said Linda.

Linda pours the liquid down the tube in about three to four rounds and sits there holding the tube upright so gravity can send the formula down.

“My daughter said ‘Well you should really get a pole and a bag so you don’t have to sit there the whole time and hold it,’ but I told her I like holding the tube. I enjoy feeding him. It's a special moment, a special time in our day together. So I think I’m just gonna keep holding the tube.”

Linda points to one of their children in an old picture.

Harry sits in his wheelchair waiting for Linda to start feeding him.

In spite of the troubles in their life, Linda’s optimism and kindness has helped get them through their hardships and beget more kindness from those around them. Kindness from neighbors who drove Linda and Harry to the hospital when she couldn’t, kindness from her community at church who put on Zoom sessions virtually for her, kindness from her family who can help take the load off on her responsibilities and kindness from her husband, whose small act of kindness meant the world to Linda.

“Many of the nurses, many of my family members have told me I’m doing a good job of taking care of [Harry],” said Linda. “I’m a good nurse, they’ll say, I’m a good caretaker, but the most meaningful thing was one day out of the clear blue sky he called me to him, and took my hand, and held it, and said ‘You’re a good caretaker, you’re a good nurse, and thank you for taking care of me.’ It meant so much to me, because he's not one to say much about how he feels, and it was just good to know that he felt this way. Because he's with me everyday, he knows when I fail, when I succeed, because everything isn’t always perfect. As much as you want it to be, and will it to be, and pray for it to be, it isn’t always that way. Life is tough, but when the people you’re closest to just say something simple like: ‘You’re a good caretaker. You’re a good nurse. I’m glad I married you.’ It just means everything to you.”

Harry passed away on Thursday August 18, 2022 due to complications with his feeding tube.

While Linda washes dishes in the kitchen, Harry wipes away tears of frustration because of his inability to start walking.

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