Madelyn Kubin was recovering from open-heart surgery. She had osteoporosis, macular degeneration, restless leg syndrome, and severe hearing loss. She lived on a farm six miles from a town of 10,000 people in the middle of Kansas, and she had very little money. And then, just a few months after Madelyn’s 70th birthday, her husband suffered a debilitating stroke and she became his caregiver.
For the next six years Madelyn maintained her contact with the outside world, and perhaps her sanity, by writing letters in which she disengaged her emotional monitor and wrote openly to her daughter about what she was going through and how she felt about it.
There are many lessons for all caregivers in Madelyn’s experiences. Here are a few, illustrated with excerpts from the book Letters from Madelyn, Chronicles of a Caregiver:
Claim Some Time for Yourself
Set aside some time for yourself each day to do something you enjoy. Read, meditate, or go for a walk. Let your loved one know this is YOUR time, and you do not want to be disturbed.
Four months after her husband’s first stroke, Madelyn wrote:
“The one place where I don’t give in to Quentin is when I want to sit up and read at night. He never wanted me to do that when he was well. Now he says he can’t sleep if the light is on, and the noise of the turning pages bothers him. He never has any trouble sleeping in the daytime. The dishwasher can be going, the TV can be on and the sweeper running and he can sleep without any problem. I told him last night to not worry if he couldn’t sleep while I was reading, because he wouldn’t have any trouble when it’s daytime and I’m working. I need some time for myself, and if he can’t sleep, he will just have to stay awake.”
Get the Right Equipment
Installing the right equipment will enable your loved one to maintain some independence, and it will protect you from unneeded physical strain.
In this letter Madelyn describes some simple adjustments that made a big difference:
“I came up with an idea in the middle of the night that Quentin approves of. Our bathroom door opens back toward the toilet stool, and it is so hard for him to get around it. I suggested we take the door off and have it open the other way.
By changing the way the door swings, Quentin can use his walker to get into the bathroom. As it is now, he has to use the cane, and that is not very satisfactory when he is so wobbly.
I’m also going to buy a plastic pad like they use under office chairs. That should make it a lot easier for him to scoot his chair up to and away from the dining room table. It will also make cleaning up spills a lot easier.
Get Out in Nature
Caregivers spend a lot of time cleaning up messes and performing distasteful tasks. Getting out in nature, even if it is only in your own backyard, can relieve stress and provide a pleasant diversion.
“This morning I looked out and saw a Blue Jay taking his bath, and before long there was a beautiful big red bird. He took a long time deciding if he wanted to get in the water or not, but he finally took a nice leisurely bath. When I looked out and saw him, I almost gasped. We will probably get a lot of interesting birds during the migration season. I’m putting out fresh water for them morning and night. It makes the kitchen work more interesting.”
Madelyn Kubin survived her caregiving experience by taking care of herself physically, mentally, and spiritually. Although there is nothing that can make the job of caregiving easy, there are resources and support groups that can help a person cope with it.