A Caregiver’s Story

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An old adage warns that our lives can completely change in a heartbeat, but it’s difficult to fully appreciate the meaning of these words until you’ve actually experienced it. I know this adage to be true because it happened to my husband, and it happened to me.

Gery Sutton was a beloved son and brother, and a proud father and grandfather. He was an accomplished horseman and a marathon runner. He was a hard-working and successful family physician with a large practice in Claremore. We looked forward to our retirement years when he could relax and we could spend more time together.

Then, on a beautiful day in October 2007, a doctor gave us terrible news that altered every aspect of our shared reality. Gery’s memory and concentration problems weren’t the result of stress, but were caused by early onset Alzheimer’s that had been slowly destroying his brain for at least two decades. He was 56 and would never grow old.

For as long as I could manage it, I would be his caregiver.

Caregiving is the most difficult job I’ve ever had. It is mentally, emotionally and physically taxing, and nothing in my background prepared me. There are no rules or guidelines. Just when you resolve one problem, another appears. Caregiving is knowing that no matter how hard you try, you’ll always be one step behind the illness.

For the first few months, as I struggled to accept the implications of his diagnosis, our daily lives were somewhat normal. Gery had a strong work ethic, and not working made him feel useless. He could still complete simple tasks, and I tried hard to keep him busy around the house. However, even then his short-term memory and attention span were severely compromised. There were many days when he asked me the same question 25 or 30 times.

After six months, things deteriorated. Gery exhibited something the doctors called “Alzheimer’s clinginess” and trailed behind me everywhere I went. His attempts to help with household tasks inevitably ended in more work for me. He had seizures and other sleep disturbances, and I rarely got a full night’s sleep. I began wondering how long I could do this without losing my mind.

In some ways, caregiving for an Alzheimer’s patient is like caregiving for anyone with a terminal illness. However, Alzheimer’s carries the added burden of watching the mental deterioration of someone you love. Alzheimer’s caregiving is lonely because you lose your loved one mentally before you lose him physically.

Gery began doing bizarre things. He was an extremely intelligent man, but this made no difference as the dementia progressed. He ate raw meat out of the refrigerator. He changed his shirt multiple times in one morning. He wore five pairs of socks, and three ball caps stacked neatly on top of each other.

In the beginning, this behavior horrified me so much that I ran into the bathroom and sobbed into a towel so he wouldn’t hear me. Then I got used to it, and that was a blessing. Sometimes, I was able to see the humor in something he did. That was an even greater blessing.

I was more fortunate than some caregivers because Gery retained his sweet nature until the end. He never became violent or belligerent; he never struck me or kicked me, though I was told this was possible, even likely. The hallmarks of Gery’s disease were anxiety, clinginess, sleep disturbances and, later, sleeplessness – all extremely difficult to deal with on a daily basis.

Caregiver stress is so toxic that I sometimes feared I wouldn’t survive it. More than one study suggests that being a primary caregiver for someone with Alzheimer’s damages your immune system and shortens your life by years. But, like thousands of other caregivers, I did it because I loved my husband. On our wedding day, I promised I would be his partner in sickness and in health. It was time to make good on that promise.

For me, the physical manifestations of caregiver burnout were unmistakable. I ground my teeth so fiercely that I cracked several molars. I had pounding headaches that were impervious to aspirin, chronic heartburn, dizzy spells and even chest pains. The osteoarthritis I inherited from my mother grew significantly worse.

Gery’s behavior became more erratic and unpredictable. Even going to the grocery store was an ordeal because he continually wandered away. One day, as we drove down a busy street, he opened his car door. Gradually, it became easier to just stay at home. The isolation warped my perspective and numbed my awareness of just how bad things were getting.

By late summer 2010, Gery stopped talking to me in any meaningful way and didn’t know who I was. His anxiety reached epic proportions, and he paced continually. I had to help him dress, undress, shower and go to the bathroom. He was incontinent several times a week. He slept less and less. When the third sleeping medication failed, the doctor told me I was seriously jeopardizing my own health by keeping him at home.

I had known from the start that eventually I would be forced to place Gery in long-term care. I also knew that I couldn’t let anyone make this decision for me because I was the one who would live with it. Even when many people were telling me the time had come, I struggled to accept it. I told myself I could do it for one more month, one more week, one more day.

Finally, the lack of sleep forced me to let go. I placed Gery in long-term care in October 2010, three years after his diagnosis. My 96-year-old aunt occupied the room across the hall, and I will never forget how ridiculously young Gery looked compared to the other residents. He died Dec. 24, 2011, of a septic infection. To this day, it makes me sad that I wasn’t able to keep him at home until the end of his life.

It would be easy to remain forever in despair over the life and love that I lost, but I’ve tried to let go of my anger and grief and move forward. Instead of asking, “Why?” I try to ask, “Where is the meaning in this?” I’ve learned that the only security in life is your own inner strength. I’ve learned that taking a loved one for granted, or treating them badly, puts you at risk for a lifetime of regret. I’ve learned that just one happy day is a rare and precious gift.

Most of all, I learned that I was married to the bravest and most selfless man I’ve ever known. Despite his terrible diagnosis, he consciously chose happiness. He didn’t waste a moment of his precious time on false hope, anger or regret. How many of us would maintain such strength of character in the face of our own mortality?

So, the adage is true. My life did change forever when my husband got sick and I became his caregiver. When grief threatens to overtake me, I recall his amazing grace and courage and it gives me the strength to go on. This is what he would want for everyone who loved him.

Sutton is a contributing editor to Oklahoma Magazine.

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