Editor’s note: This is the seventh of a monthly series of articles that will be written by Methow Valley resident Don Reddington, which will explore the issues of living with Alzheimer’s disease. The articles will be written in collaboration with Raleigh Bowden, M.D., Katie and Josephine Bristol and Methow Valley News reporter Laurelle Walsh.
I have Alzheimer’s disease. And while I don’t require a lot of help from my wife, Ginger, now, I know that in time I am going to need help doing lots of things I am used to doing for myself. I will need the help of many caregivers, and I hope they understand the special needs of a person with Alzheimer’s disease (AD).
Fortunately for me, I learned my diagnosis at an early stage of the disease, which has given me a chance to think about how I’d like to be cared for later. I have learned a lot from spending time with my friend Jerry Bristol, who is at a later stage of AD.
I also learned about the challenges of caring for a person with dementia from conversations with Dr. Jody Love, who helped care for her father-in-law, Harry, until his death.
One of the things Dr. Love said that really grabbed my attention was that Harry became more and more like a child over time. It’s nice to think that I may become like a child again once I reach the later stage of the disease.
“One of the best parts of the experience was getting insight into what Harry would have been like as a child,” Dr. Love said. “It was a blessing to me.”
Dr. Love said caring for Harry required incredible patience. She and her husband, Mark, would remind Harry how to wash his hands after using the bathroom and then had to teach him how to do it again an hour later. “It was like teaching a child who has never learned it,” she recalls. Once she understood that Harry was “going in reverse,” it helped her deal with the frustrations of caregiving, she said.
My good friend Dr. Raleigh Bowden works with people facing difficult health challenges, such as dementia and Alzheimer’s disease. She also works to support family caregivers. She said patience is the biggest challenge for caregivers.
“Caregiving involves continually adjusting to the changing needs of the person with AD,” Dr. Raleigh said. “It requires a tremendous amount of patience, listening to the same questions over and over and being present for the frustration and anger that sometimes arises in the person with AD — patience not being understood by the person with AD.”
Patience is a challenge
I think that patience is the biggest challenge for Ginger in taking care of me. I am still able to do most things for myself, but Ginger has to help me remember words and names, recall places and people, review our finances, and plan and organize my days.
I can tell you that I have bad days and days that I feel better. Sometimes I lose patience more quickly when things aren’t working right, like on the computer. When I do work around the house I have to think more carefully about what to do first and what to do next, whereas before it was automatic.
As a couple, Ginger and I have gotten really good at figuring out our day and what we’re doing. Because it takes me longer to do things now, I try to figure out how much time it’s going to take me to do something.
Dr. Love said keeping a regular daily schedule helped Harry a lot. “It gave him a sense of security and it helped us, too,” she said.
I want to continue doing things I’m familiar with. For example, I’ve been working steadily to clean up our property since last summer’s fires and floods. I go out on the tractor, put on my iPod and listen to music. I like driving my tractor because I know what I’m doing. It gives me peace. When I stay busy, I feel better.
“It’s important to give the person with AD credit for being able to do a lot more,” Dr. Raleigh said. “Continuing to do tasks that they’re used to may allow them to keep their abilities longer.” Meaningful activities can also help reduce behaviors like wandering and agitation, according to the Alzheimer’s Association.
Jerry’s family try to find jobs that Jerry can help out with and adapt tasks to his abilities. For example, Jerry was able to help his wife, Josephine, and daughter, Katie, sort and peel garlic as long as they cleared the papery wrappers off his work area as he went along and gave him fresh material to work with, Josephine said.
“He wants to help so much, but there are very few things we find that he can help with. He was able to help wash the planting pots for the garden; he can help me make the bed; he can put some of the dishes away, but not all,” said Josephine. “Having him help is not easy either,” she admitted. “Whereas it may take somebody two minutes to do something, it takes Jerry 10 minutes.” That’s where the patience comes in!
Jerry is an important part of my life. When we are alone together, without pressure from others, we both have an easier time communicating. Sometimes I see Jerry get worked up and upset when he’s trying to speak and people don’t understand him. When that happens, I want to advise him not to try so hard to do something he cannot do. I want to tell him, “Just live within your capability.”
I want people to know that it’s important to stop what you’re doing and look the person in the eye when you’re talking to someone with AD. Stop doing what you’re doing and sit down and talk to the person.
Jerry has a special photo album called “Jerry’s Face Book.” It has family photos, pictures of friends, and pictures of familiar places around Twisp. It is a good communication tool, and I sometimes use it when I’m talking to Jerry to help him remember people.
Animals are good therapy for people with AD. I like staying close to my animals; I feel comfortable with them. People ask me why I have all these animals and I say, “because I can talk to them easier than I can talk to you.” Spending time with my cats, dogs and rabbits calms me down. A pet is a person you can talk to. These are my future friends. As I get worse I have more fun with my animals than I do with people.
Dr. Love told me that Harry loved to sit in front of their large windows and watch the deer walk by, the chickens in the yard, and the hummingbirds at the feeder. Sitting and petting the cat seemed to be calming for him too.
Jerry adores babies and seems to have a special connection with them. His daughter, Katie, calls it baby therapy because it seems to bring both so much pleasure.
I’m trying to enjoy what I have today, and not to worry about things I cannot control, like whether or not there’s going to be another big fire this year. For me there’s more important things to worry about. It is what it is. Life is good!
Our thoughts are with you.
Don Reddington and Jerry Bristol — AD League