Category Archives: Caregiving Help

Kathy’s Story: Life As A Caregiver

Life doesn’t always turn out the way that you expect it to. This is the story of Kathy.

Kathy sits across from me sipping a herbal tea, at 71 she is active and tells me that she is going dancing after our interview. Kathy has been a widow for 4 years, and she is trying to adjust to her new life.

She met her husband at a dance when she was 19. He was the older brother of one of her friends, and after the dance, he got her phone number from his sister.

Dave asked Kathy out on their first date by posing her a question. “If you can tell me the color of a red pencil, then you can go out with me.” She liked her husband Dave because he was smart, funny, and a little sarcastic. “I got tired of the sarcastic part pretty early on, and I let him know that.” Dave had a significant limp from a bout of childhood Polio. He was born before the advent of the Polio vaccine and contracted the disease as a baby. Growing up he worked hard to compensate for his handicap by regularly working out in his homemade basement gym.

On the surface, Kathy felt that they were dating casually. However, six months into the relationship she ended a connection with another man. Clearly, there was a part of her that knew that there was something special about her future husband.

She was still in school, and Dave returned to college studying at Lewis University. Kathy recalls a letter that he sent her around their 3 month anniversary. In the letter, he thanked her for the brownies that she made him and told her that he would also like some cookies. Although humorous, that simple comment foretold of things to come.

They had little money, and it took them 6 years to save enough to get married. Dave eventually became a special education teacher, and Kathy taught elementary education, both for the Chicago public schools.

They saved and bought a home on a large lot in the country. They traveled a bit. They raised a family. This was the American dream of the 1980s. Dave loved to eat. In fact, Kathy says that he was obsessed with eating. Dave started to gain weight and went from thin to morbidly obese. Along with his obesity came diabetes. Along with diabetes came diabetic neuropathy. Along with diabetic neuropathy came immobility. He was already limited by the aftermath of his polio, but his neuropathy made him disabled. It became difficult for him to walk or maintain his balance. This made it hard for him to contribute in a meaningful way at home.

Slowly, but progressively, more and more of the home tasks fell on her. This is how she describes a typical morning in those days:

“I would get up at 4 AM and walk the dog. Then I would throw clothes in the clothes washer, and empty the dishwasher. In those days I made a lot of oven breakfasts, and so that would be cooking. After breakfast, I would get my kids ready and drive them to school or the sitters. Then I would go to my full-time teaching job.”

Kathy was feeling tired and stressed. Despite this, she put one foot in front of the other and pushed forward. “I didn’t think about it, I just did it.”

Dave’s condition continued to worsen and his doctors came up with a new diagnosis, Post Polio Syndrome. Post Polio Syndrome is a syndrome that occurs many years after a person has contracted Polio and it is characterized by muscle weakness, fatigue, and pain. Dave went from using crutches to being a wheelchair user in 1996. It was becoming increasingly difficult for him to get out of the house, and once out he could only go to handicap accessible locations. This was not only difficult for him but his entire family.

Kathy continued to push forward, but her life was becoming further limited, and she was avoiding social gatherings because of the enormous difficulty in transporting Dave. Her world was closing in.

In 2009 she started to notice another change in Dave, he was beginning to stutter. Dave was a bright and inquisitive individual, but now his logic seemed way off. Simple things, like learning how to use an electric wheelchair, were beyond him. He was complaining of vision problems, although his eyes tested OK. He had trouble writing. In 2011 an ophthalmologist examined him and thought that he may have Parkinson’s Disease which can be confused with another illness called PSP. Dave was seen by a Neurologist who did an MRI of his brain. That test showed an unusual hummingbird pattern which is the classic sign of PSP or Progressive Supranuclear Palsy, a disease that destroys part of the brain. This explained the stuttering, lack of coordination, problems with logic, and the fact that Dave had gone from being a nice person to a nasty one. Dave started to show a lack of empathy, and at the same time, he was becoming progressively needier. If Kathy was out of his sight for a moment, he would bang on the walls or call her cell phone to get her attention.

She now had caregivers coming in, but they were only present 3 hours a day. “Sometimes that was the only time I could sleep as Dave would often be up at night.” Another symptom of PSP is dementia. Kathy’s situation was similar to someone who had a spouse with Alzheimer’s disease. It was a tough time. She had discovered a Facebook group for PSP caregivers, and that served as a lifeline for her. “Connecting with other caregivers, I started to understand that Dave’s behaviors were due to his disease.”

The course of PSP runs from 6-15 years, and on August 17, 2014, Dave passed away at home.

Kathy spent much of her marriage taking care of Dave, and through the process became ever more isolated from the outside world. A part of her wanted to live, to experience, to explore. In many ways, she was like a person who had been released from prison after spending 20 years in confinement. She had a desire to move forward, but her life had been so structured that she didn’t know how. “My friends in the PSP group talk about this. That first year is go, go,go. It is like you are trying to make up for all of the years that you couldn’t do anything. You move forward, and you make mistakes. I joined a dating site, but I didn’t understand that there are predators that lurk on these sites. Let’s just say that I got hurt.”

Kathy continues to move forward, but at times it is difficult to know what forward is. She is starting to do things for herself. She travels more, she has joined a gym, she is taking dancing lessons, she casually dates, she learned how to swim, she learned how to ride a horse, she is a regular at a senior MeetUp group. Despite this she is lonely. She has gone from being a caregiver to being free. However, being a caregiver was her identity. She has lost her identity.

“I decided that it was time to talk to someone who could help me figure out where I go from here. I need to accept that fact that I may never have another partner. I need to be happy with myself.”

Kathy says that she is still a work in progress. She continues to expand her experiences, but at a less frantic pace. She is enjoying her friends, family, and grandkids. She continues to learn and grow.

We never know where life will take us. Every day is a gift. Good days have bad in them. Bad days have good in them. It is our task to extract what good that we can from every day, as we will never be given that day again.

Kathy is a heroic person who is trying to live by that philosophy. I wish her well.

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Kathy