Reflections of a Caregiver
Reflection of a Caregiver
by Ingrid Shelton
“Your husband should be in a care home,” the social worker had told me when I picked up Phil from the hospital after a stay of several weeks. “He is somewhat paralyzed and will need more care than you can provide.”
For a moment I was speechless. But then I said, “I know he wants to be with me at home even now. We do not want to be apart.”
“You will find out that it will be too difficult for you to care for him at home,” the social worker replied. “Call me then.”
Later, I thought about the social worker’s assessment. The doctors had been unable to diagnose the reason for my husband’s growing leg paralysis. Even though I realized caring for him might be difficult, I did not want to send my husband to a care home. Instead, I hired a nurse’s aid to help me with some difficult tasks like bathing and to stay with him whenever I needed to go out, even for a short time.
I rented a commode for Phil’s needs at night, then a wheelchair, so that I would be able to take him outside. Only 100 lbs, I found the wheelchair quite heavy to fold and put into the trunk of our car. Yet, I did it gladly when I realized how much he enjoyed the outing, especially sitting on the beach in the sunshine, watching the antics of the seagulls and the boats gliding along on choppy waves.
My life now revolved around my husband and his needs, his medical appointments. Somehow I did not think about the future. I was too busy living in the present. I assumed that once one of the specialists would determine the cause of his paralysis, he would point to a cure. I shut out of my mind any other possibility. We never talked about what would or could happen next.
Phil often looked sad. I knew he thought he was a burden to me especially since I did not have any type of social life. But I assured him that I would rather stay at home with him than go out anywhere without him. Even though his legs were not working as they should, his mind was in perfect order. It seemed that my attitude rubbed off on him. If I sounded upbeat and optimistic, he also felt hopeful and encouraged. If I smiled at him, he would smile back. As the weeks went by, Phil’s legs got weaker and weaker. The two specialists we had seen so far could not determine the cause of his growing paralysis.
Then, came the night when Phil wanted to stay up late and reminisce. Finally, when ten o’clock rolled around, I said. “I think we should go to bed now. You have a specialist’s appointment in the morning.”
Suddenly, Phil looked at me earnestly and said, “Who is going to take care of you? Who will drive you around?”
“Oh, I can look after myself. And I have been driving us around for a while now.” I tried to alleviate his concern.
“Time is short,” he then said.
“Yes, but we still have lots of time left together,” I said, wondering what he meant and helping him to bed where he closed his eyes immediately. When I gave him a quick kiss on the forehead, he opened his eyes, gave me a crooked smile and one last loving look before falling asleep.
The next morning after I got up, I waited for him to awake. When he didn’t wake up at his usual time, I tried to wake him. To my shock and horror, he had already slipped into eternity. Pain and grief shot through my soul as I realized that my husband would never open his eyes again.
Later, I thought of our last night together. Had Phil had a premonition that he was about to leave this earth? Why hadn’t that thought ever occurred to me? I berated myself. Then guilt surfaced. Had I given him the care he had needed? How much had his self esteem suffered because of his paralysis? Had I affirmed his self worth again and again? Had he really felt loved unconditionally? What if I had been the one requiring 24 hours a day care? How would I have felt if I were the one receiving care? I will never know the answers now.
Alone, I had all the time to myself I wanted, but I missed Phil terribly. I felt I would rather have looked after him the rest of my life even as an invalid than live without him. Yet, I realized that God had a plan for both of us. For me it was to care for him for just the last few weeks of his life. Perhaps I would not have been able to carry that responsibility long term because of the physical and emotional toll it had taken on me.
Would I have changed the way I looked at care giving had I known my husband’s time on earth was short? Yes, certainly. I would have made every day, every moment count to improve his emotional and mental well being. I would have given him a hug every day. I would have told him over and over that I loved him. I would have assured him that he was okay the way he was even with his limited physical ability. I would have encouraged him to hope for the best. I would have bolstering his sagging self esteem by affirming his self worth. And, most of all, I would have prayed with him and for him every day.
Today, I am still not sure if I had scored high enough on those points. However, in hindsight with my limited knowledge and experience as a caregiver, I had tried to do the best I could at that time, and I am at peace.
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