When I met Jeffrey, we were both single and had children. I had gone through a rough divorce, and he had been divorced for many years. I had two small children, and he had a daughter.
When we came together, we did a lot of research on blended families. We joked that it was like throwing everybody in a Crockpot and waiting a few years for everything to fall in place with good relationships. It took a few years, but we became a united family. Our kids got along, and we learned how to stepparent and become one family.
Jeffrey worked as a computer software developer, and I worked at the courthouse. We'd typically go out for dinner twice a week, listen to live music, attend church every Sunday and travel to Jamaica at least once a year. We were happy.
But our world changed five years ago when Jeffrey's health began to decline. He started to decline about a year before us even thinking anything was wrong. He had a good job, which was a need in preparation for our kids going to college. But he couldn't handle the role anymore. He said to me, "Kim, I just can't."
Jeffrey stayed in his role for another year before we noticed his memory deteriorating. We started at our neurologists, and they misdiagnosed him. So I began to call Columbia University. I said, "There's something wrong with my husband. You have got to get him in." We got into the head of neurology, and she knew right away that he had Alzheimer's.
The day the neurologist called with the diagnosis, I became a caregiver.
I remembered what the neurologist said as we left her office after Jeffrey's appointment. She looked at me and said, "You need to get everything in order." I didn't know what that meant at the time, but Jeffrey and I began to plan. We created wills and tended to some more considerations of what life had for us now.
I'm type A, and I like to plan. As I read more about Alzheimer's disease, I realized I could only plan the next year because I didn't know how Jeffrey would be in two, three or eight years. So I panicked at thinking about the future. I wanted to be with Jeffrey as much as possible. I worked two jobs, and I would try to run home in between them just so I could see him and give him a hug and kiss. It became very stressful trying to ensure I was showing Jeffrey constant love, as I didn't know if he'd forget who I was the following year.
Jeffrey is a very positive person. I'm a realist, and it's hard to always see the positive. Something I do to keep my positivity up is to spend time with Jeffrey constantly. For example, going to dinner. I never want to be negative around him, so I hold it until I'm alone to feel all my feelings.
After five years of being a caregiver, I was struggling. At my counselor's office, I explained how I feel so guilty. There was this time with my younger daughter – we were at dinner for business, and I was rushing. I told her we had to go home even though the meeting wasn't done. I had worked all day at the courthouse and hadn't been home yet to see Jeffrey, and I needed to see him before he went to bed at 8 p.m. Once my counselor heard that, she told me, it's not the quantity of time, but the quality. She told me that I needed to care for myself, too.
A few months later, I'm slowly learning to take time for myself. To be a good caregiver, I must ensure I'm taken care of. It helps that Jeffrey is very supportive of me. He once said that, as my husband, he “needs to care for his caregiver."
I used to think about next year and what's ahead constantly, but I realized that I was missing out on so much with that mindset. Now I say this: Live day by day. Getting a diagnosis is very scary, but accepting your fate allows you to continue.
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