Overpowering the Demands of Caregiving - Lessons From Madelyn

Madelyn Kubin was a Kansas farm woman who overpowered her own failing health to care for her husband after he suffered a debilitating stroke. She chronicled her experience through writing letters to her daughter. There are many lessons for all caregivers in Madelyn’s experiences. Here are three, illustrated with excerpts from the book Letters from Madelyn, Chronicles of a Caregiver:

Write a Rant

Writing about your anger, fear, and frustrations can get negative feelings out of your head. When you allow yourself to rage on paper you release intense emotional energy.

Writing this rant didn’t change Madelyn's situation, but she was able to reposition her attitude after blowing off a little steam:

"I had reached a stage where everything about Quentin irritated me.
I hated the way he huffed and puffed when he got in bed. It didn’t start my morning off right to get out of bed and step on a very wet Depend.

I wanted to scream when he would sit and watch me put the orange juice, medication and vitamins, etc. on the table. And then when I would come with the toast, he acted like he was surprised that it was time for breakfast. It made me furious that I would have to wait and wait while he struggled to get his chair located right.

I don’t have time to remember and itemize all the other irritants, but I can tell you that everything he did aggravated me.

I do realize that the stroke has affected him in so many ways that aren’t obvious. I also know he is definitely not this way by choice and that he is not trying to irritate me.

I believe it is important 'To do unto others as you would have them do unto you.' That is the reason I don’t want to be cross with him. I also realize that some day I might be in even worse condition than he is. It would be awful to be struggling with every little thing and have your caretaker and others cross with you, so I've readjusted my attitude, and today I'm feeling a little better.

Stay Connected to Family, Friends, and Organizations

It is not uncommon for invitations to social functions to stop once a person is diagnosed with a chronic illness. As a caregiver you will need to be proactive and innovative to make sure you don’t become isolated.

In this letter Madelyn tells how she turned a regularly scheduled meeting into a party:

'Our Fellowship Group has a carry-in luncheon once a month. I decided I would have them come to the farm this time, and I have had more fun getting ready for them. Except for being a little windy, it was a perfect morning. I sprayed the yard with Yard Guard and there wasn’t a fly or mosquito in sight. There were 24 of us.

Quentin was there and he enjoyed himself so much. He was sitting with some especially interesting people. I regret I didn’t get a picture of him with the happy expression he had on his face. It is something that triggers memories of the past, but it is very rare now. The experience is somewhat like the feeling one has playing golf – one good shot makes a person want to go back and try for it again. I will be trying to think of things for him to do so I can see that expression again."

Accept that Death is a Part of Life

We all know that death is inevitable, but it can be very difficult to discuss. Talking about it openly can remove some of the mystery and fear and open the door to some meaningful conversations.

Madelyn wrote:

"On the fourth anniversary of Quentin’s stroke he was terribly depressed. He was convinced he was going to die that night, and he wanted to. When we went to bed he told me he didn’t know what was going to happen in the night, but if I woke up and he was having a problem, he wanted me to try to go back to sleep and leave him alone.

He woke up alive and fairly cheerful the next morning.

I never get excited about death premonitions the way my mother did. Dad could make her jump through a hoop when he would cry and say he was dying. I made three trips to Florida one year. She would call me up crying and upset about him. Frankly, it never made much sense to me, as she had kept a nice black dress in the back of her closet to wear to his funeral since 1946.
One time when I went to Florida Dad started the crying with me and saying he was going to die. I said I thought death was one of the nicest things God had planned for us. I told him it would be terrible to think a person would have to go on forever in a body that was hurting and didn’t work right. I still feel that way. He stopped crying while I was there.

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, writing a rant, engaging in social interaction, and talking openly about death can help ease some of stress.