My Journey (so far) as a Caregiver
By its very nature, a stroke is a sudden event. And that sudden event is followed by a series of sudden changes: a sudden change in abilities, a sudden change in the dynamics of the family, a sudden change in family finances, perhaps a sudden change in dreams along with myriad other sudden changes. One of the things I have learned is that there are not many sudden solutions for all of the problems facing everyone involved in this ongoing situation.
When my husband of 35 years had his stroke two years ago, he had just returned to work a month before. He had puttered at various things since his retirement a couple of years earlier but wanted a more regular routine until I retired in another year or two. Then we could begin the fun of unscheduled days and weeks together. You know, the traveling and visiting with friends, house fix-ups we had put off for years, experimenting with cooking exotic foods, taking interesting classes, enjoying our children and grandchildren. After the initial shock of his coming so close to death and then seeing him so helpless with his entire right side completely paralyzed, I had a hard time picturing our future in any clear way. We just had to get through those first five days in the hospital and then what turned out to be seven weeks in a rehabilitation facility.
It was during those scary, dark first few weeks while he was still in the hospital that I began to develop coping skills that have been crucial in maintaining my happiness ever since. I kept thinking, “I have to keep myself together so that I can take care of him. How do I do that?”
Looking back, there were many little things that helped. I usually listen to NPR or classical music when in my car but those weren’t working for me. Neil Diamond and John Denver CDs helped elevate my mood considerably. When driving back and forth to the hospital, I would turn up the volume and sing my heart out and that just seemed to move my mood away from despair. The color of my clothing was also important to my frame of mind. I felt compelled to choose bright, cheery colors. I also felt the need to keep my hair and makeup as attractive as possible no matter how tired I was. When glancing at myself in the mirror in the hospital restrooms, if I “looked depressed, I felt depressed.” I was just playing tricks on myself but it often worked. Bubble baths, an occasional Starbucks decadent “coffee thing,” digging in my drawers to find all of those cute little lotions that seemed too special to actually use, and then using them. Granted, these were just band-aids but they helped.
My remedies may not speak to you. You need to figure out what works for you. What is it that will counteract your fear and exhaustion?
I plan to write more in the future about those first days after coming home from the hospital—books that were helpful, spiritual uplifts, journaling, hope vs. acceptance, grieving the life that might have been while carrying on with the life that actually exists, awkwardness in enlisting help from friends, the value of support groups, and many other topics that touch most of us as caregivers. This column will also include writings from others here at the Rocky Mountain Stroke Association. Some are caring for spouses like I am. Some of us are younger, some older. Some are caring for children who have had strokes. Some of us are new at this like I am, only two years into the process. Some have been caregivers for ten to fifteen years.
Each has a story to tell. |
