This week is tough.
My mother-in-law Maureen died at age 72 on March 5, 2004, after a brief but horrific battle with Lou Gehrig’s disease. Five years later nearly to the day, my father died at age 82 of heart failure. Both lived long and full lives, but losing two of the most powerful and influential people in our lives was heartbreaking.
I’ve never been particularly fond of early March, and I could feel that odd creeping of the anniversary of deaths last week. I was a little off (more so than usual) and then I thought, “Oh, of course. How could I forget?” When I shared this with my mom, she said, “Yes, I try not to remember what happened at this time of year too much.”
My mother, a registered nurse, was my Dad’s primary caretaker always, but more so during his final weeks. His shouts of “Gerry!” became sort of like a baby’s cry, frequent and insistent. Hospice workers told us that we would cherish the opportunity to be with him in his final days, but I still have yet to come around to their point of view. Watching someone you love die is the worst thing in the world.
Both my father and my mother-in-law were two of the toughest people I ever knew. They were physically strong, but I’m referring to their personalities. Both were extremely opinionated, almost bombastic. They were strident, and commanded rooms. My father had a wicked Sicilian temper, and my mother-in-law was a know-it-all.
But it all came to a crashing halt when they became gravely ill. My mother-in-law tripped over a dishwasher door in May injuring her knee, and by July was so dog-tired that she went to the doctor for blood tests, which came back normal. She had no appetite and was losing weight, but her primary symptom was extreme fatigue.
This once robust matriarch lacked strength to walk a short stretch of beach to test pond water for bacteria, or rustle up dinner. By the fall, she remained without a diagnosis, but spent most of her days on the living room couch reading and sleeping. When we finally learned that she had the most aggressive form of Lou Gehrig’s disease that attacks the lungs, we were devastated. She died within six months of her first symptoms.
My Dad suffered with heart disease, ironic for a cardiologist who spent his medical career helping people with heart problems. In his later years, he had an ablation and a pacemaker to control his irregular heartbeat, but he detested when it would go off because he would feel a severe shock that terrified him.
He used to tell me his heart was like an old jalopy – broken and junky, but good enough to get him from point A to point B. As a cardiologist, he knew all too well what his condition would do to him, but he remained the eternal optimist. He always underscored the importance of a positive mental outlook, noting his patients that followed instructions without argument often fared better than those who were emotional or upset.
Watching both of these wonderful people in the final stages of life taught me a few things:
- When the s&*t hits the fan, you can’t do anything about it, so embrace life while you’re healthy.
- When someone you love is sick or injured, the world as you know it ceases to exists.
- When you’re critically ill, your family will be the ones to come to your side and care for you (hopefully).
- There is nothing more important than spending time with people when they are terminally ill. There is nowhere more important to be.
- No one really understands what it’s like until they go through it.
Care-taking for relatives is a whirlwind that’s physically and emotionally draining. But it’s also a financial hardship. People are forced to leave their jobs, and many never return. Many caretakers must take unpaid leave or quit jobs, adding finances to the list of worries.
A few months ago, one of my former high school classmates Jane Miller Laufer took to her Facebook page to update us on her in-home clothing business LuLaRoe. A weary looking Jane announced that she was putting the business on hold to care for her son Matt, a paraplegic who had taken a turn for the worse.
As her voiced quivered, Jane explained that she had moved into Matt’s house, and was his full-time caregiver. She said it was his wish that he remain at home for as long as possible, but she was clear: he was terminally ill and not going to recover. “He has his good days and his bad, but he is dying,” she said.
A registered nurse, Jane is eminently qualified to care for her son, but I wondered how difficult it would be for a mom to wear the two hats. I decided to ask Jane. I wasn’t sure she’d get back to me. She is very busy with her son, working the 7 a.m. to 7 p.m. shift, before turning over duties to a night nurse.
But I had an inkling she might message me back, and she did. “Whatever I can do to help,” she wrote.
I interviewed Jane for a piece on proposed legislation to would provide paid medical leave for Connecticut residents. Her story is heart-wrenching and compelling, giving us a glimpse of the human side of full-time family caregiving.
To read Jane’s story, visit: http://now-ct.org/why-paid-leave-matters/.