You may be expecting a letter to someone else about a caregiving concern. After all, that’s what I usually do. But the following note is actually to myself. I thought it might be helpful to share with you my history of caregiving and the lessons that I’ve learned that are sometimes difficult to apply to myself.
Dear Carol: How could you know that your offer to pick up some groceries for Joe after his wife’s funeral would lead to five years of daily visits? How could you know that you would become his primary caregiver: taking him to the Telephone Pioneers of America dinners, riding with him in the ambulance after you found him with a dislocated shoulder, taking him, along with your kids, on multiple 150-mile jaunts to visit his 90-year-old sister; helping him through cataract surgery and recovery, the aftermath of his broken hip, his last breath. No, you couldn’t know this was your future. You’d simply offered to pick up his groceries that day. Yet, this fateful decision made you what you’ve become: a caregiver for multiple aging loved ones.
When you were a teen, you often took care of your grandma, who was ravaged by Rheumatoid Arthritis (RA), while also keeping track of your toddler sister. When you were the joint owner of a four-plex, you did your best to help your tenant/neighbor who struggled with RA. Later, you helped your aunt and uncle, your parents, and your in-laws with the small things that they needed. However it was Joe who marked the beginning of your life as a career caregiver.
Fortunately, there was a small breather. After five years of closeness, Joe’s death was hard, but it put you briefly back into a mode where the majority of your attention was on your two sons, most heavily on your youngest who had multiple health conditions. That brief reprieve didn’t last long, though, since your dad began having intermittent health problems and hospitalizations not at year after Joe’s death.
Another major marker came when your uncle had a stroke. While he was hospitalized, your aunt was diagnosed with cancer and died within weeks of that diagnosis. Your uncle needed home care so you learned about setting up those services and supervising the care. Your mom had her first hip replacement. Then your dad had brain surgery and came out of that experience with severe dementia and needed professional nursing home care.
Your father-in-law had health concerns and you needed to care for him while your mother-in-law took some time for herself. Your mom had another hip replacement and she never did well after that, so you were needed by her daily for bathing and other care. Your father-in-law had massive strokes and died and your mother-in-law began showing dementia symptoms. Your mom eventually needed to move into the nursing home with your dad. Your mother-in-law followed. Your uncle died.
Oh, there was more, I know. So much more. I want to remind you of these steps in your journey. I know that you sometimes think back and wonder if during your 15 years of near-daily nursing home visits you “did enough.” You wonder if, even though you were caring for five elders at once, plus a chronically ill child and a healthy one, you should have somehow figured out how to have one or more elder move in with you. You know that your instincts for caring for your dad’s dementia were far ahead of the medical community, but you all too frequently wonder if you missed a chance to help him live better with dementia.
Carol, you write articles for other caregivers. You write advice as The Candid Caregiver. You write a newspaper column on elder care. In all of these formats, you tell caregivers to take care of themselves. To watch so the stress doesn’t turn to burnout. You tell them to forgive themselves for being human. You tell them unearned guilt should be dropped because it’s destructive to you and those around you. What about you?
You have such compassion for these caregivers, yet even years later you occasionally berate yourself for a missed cue that could have helped you better handle one of your dad’s episodes. You shed a tear when you remember that you could have been more understanding when it came to some of your mother’s moods. You wonder what you may have done differently if you’d only known more about everyone’s emotional as well as physical battles.
We’re you perfect? No. Did you always make the right decision when you triaged the needs of so many? Probably not. What you did was give yourself to others, not just for a day, but for year after year, and you did the best that you could with what you knew and what you had. It was enough. Don’t just forgive yourself. Give yourself credit for a job well done.