Caregiving in Three Acts
Caregiving in Three Acts
My father had a heart attack when I was young. I watched my mother care for him in the hospital and then at home as best she could. At the hospital I learned three important lessons:
- Spend as much time as possible with the patient.
- Call for help if something seems wrong.
- Keep a nice box of chocolates in the room so the nurses will stop by to visit when they can.
These lessons stayed with me and came in handy later.
When my father came home from the hospital, my mother learned to cook heart-healthy meals for him and the family. Sadly, she was not a good cook; everything she made seemed overdone, bland, or both. Desserts were regularly restricted to fruit. But she was way ahead of her time in focusing on low fat, lean protein, and reduced sugar. I learned that lesson well too.
Much later, as my parents were aging, I stepped into the world of long-distance caregiving and advocacy. By then, they were living far away from family. I hired a geriatric care team to check on them regularly, and my sister and I would periodically parachute in to help as needed. Sometimes that meant hospital or doctor visits; sometimes it meant making sure the logistics of life were managed; and sometimes it meant providing love, moral support, and advice for them and their needs.
As their conditions deteriorated and their needs increased, my parents moved to a care facility near my sister. She became their primary advocate. I learned a valuable lesson then: only one person can and should speak for the family. My role became secondary which was sometimes difficult but nonetheless important. No one in a hospital or care facility should have different voices in the mix speaking for the patient and making decisions on their behalf. It can be confusing and even detrimental for all concerned. So I accepted my role as a secondary, episodic advocate playing what seemed like a bit part in an unfolding drama with an expected and ultimately sad ending to come.
Meanwhile, even before my parents started to seriously decline, my husband began a 24-year journey that took him and our family through 12 separate hospitalizations — some very serious, life-threatening situations. Over the course of those years, I learned in myriad ways how to be a hands-on, primary — but still episodic — caregiver. And slowly, over time, I learned to become a fierce advocate for him. All the while, I had a job and young children whose needs were significant — especially with a father who intermittently became seriously ill and whose outcome was not always assured. All this made for a complex and stressful juggling act.
In a sense, I was living the life of the sandwich generation caring for both my husband and children. Sometimes it felt more like a club sandwich when my parents’ needs also came into play.
When I am asked how I managed to keep all the balls up in the air, I honestly have to say that I don’t know; but somehow I managed. I tend to be good in a crisis — well organized, calm, and collected. I save my meltdowns for later when the crisis is over.
One thing I learned over time is to maximize my strengths. I am a better, stronger, and more effective advocate than I am a caregiver. I like to speak up and out for causes larger than myself, and I am good at it. Advocacy suits me well. Hands-on caregiving is a little harder for me. I can be kind in doing what is needed, but it doesn’t come as naturally as advocacy. That explains why I wrote a book about patient advocacy several years ago and continue to blog, podcast, and speak on advocacy issues. After becoming a communications professional in the federal government and then starting a consulting business of my own, advancing the importance of patient advocacy became my calling and my next career.
My third act of caregiving and advocacy is around the corner; I don’t yet know how far. My husband is a little older than I and has had a long history of illness. Today he is doing well, but, as we age, it is likely he will need more caregiving and advocacy down the road.
And what about me? At some point I may become the care recipient myself. This past year, I had a small glimpse into that future while recovering from knee replacement surgery. Our daughter moved back into the house, taking up residence in her old bedroom, to nurse me through the first week of recuperation. She was a godsend. When I complimented her expert care, she told me she had a good role model. And our son, who is a trained emergency medical technician, came to provide support when needed, such as helping me get back into the house when I came home. My husband took care of all the honey-do tasks while I recovered — the ones he normally does and mine, too.
Everyone did the things they were good at doing — except for me. I had to learn to rest, accept care, and acknowledge what I could not do for myself. It was uncomfortable but necessary. And it was a window into a future when I may need more permanent care. If and when that occurs, I know I have a wonderful backup team. But I hope there will be lots of time between now and then to get used to the idea. For now, I amuse myself with the vision of organizing all the residents of my independent or assisted living facility to demand better care, improved meals, or more cultural events. Like I said, I am good at being an advocate.
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