Becoming a caregiver


In 1990, I was diagnosed with Multiple Sclerosis and was completely devastated. I felt it had ruined my life and stolen my life from me and [I] was very disabled for a year with grief and with the exacerbation that I was having. 

In 1991, I was coming out the other side of that and my father—my mom and dad lived on the same piece of property as my husband and I, and my father had a seizure behind the wheel of the car and was hospitalized and was found to have chronic obstructive pulmonary disease, seizure disorder, congestive heart failure, and over the years he started having the mini-strokes. One week later, my mother was taken to the eye doctor and discovered that she was going blind—and fairly quickly with macular degeneration. So she could no longer drive. So I was of the only one of the 3 of us that was driving. 

A year later my husband was diagnosed with rheumatoid arthritis, which didn’t seem that huge a crisis at the time. But, over the years he got more and more disabled with it. So, in about the mid-90’s, he was basically in bed. He did this little triangular thing. He would be in bed, walk to the chair, walk to the bathroom, go back to bed; walk to the chair, watch TV, go to the bathroom, go back to bed. And on really bad days he couldn’t get out of bed, and I would take him bottles and things so he could urinate in them when he couldn’t get up and watch TV and go to the bathroom. So it was very difficult seeing him in as much pain as he was. And he was on morphine, and it was almost like a traumatic brain injury; it was completely derailed him.

My father, at that time, was getting much sicker and was in the hospital, it seemed like, every long weekend. I’d get a desperate phone call from my mom: “Oh, your dad’s not breathing,” or “Your dad can’t get his breath.” And so, at 2 in the morning, I’d go over there and try and calm his breathing down and call an ambulance. And he’d be in the hospital for a week or so, and then he’d come back home again. And the next long weekend came along, he’d be off again. 

So by 1997, my husband was still pretty much restricted to bed, mom was really quite blind, and dad was in the hospital. In the first 9 months of that year, [dad] was hospitalized 10 times. So, it was like an ongoing nightmare. And at the end of September 1997, he died.  A week later an uncle of mine, my mom’s brother, showed up at our house. Now this was a 20-mile walk from where he lived, and he had walked there. It became obvious to us that he was well in the grips of dementia. And his wife was already in long-term care, so he and they had no children, so he became, sort of, my next distraction from everything I was doing. He only lived probably a year after that. Dementia just totally ruined him. Then I had an aunt—my mom’s sister. [She] also showed up with signs of dementia and she only had one daughter and she lived in London, England. So it became almost a family joke that “Oh well, at least I’m out of relatives.”

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