My caregiving experiences have not been tidy or sweet, with new found family appreciation and reconciliations. Lucky for you, not so lucky for me. My family baggage is rife with enmeshment, narcissism and untreated alcoholism. Messy.
I did not plan on being my family's go-to caregiver. Many times I wondered why I was being blessed (cursed) with all this caregiving struggle and frustration. I felt bombarded from all sides. It wasn't just my family that was difficult. Where were the experts guiding me through? Mentors were far apart and few. I was making it up as I went along. It was hard, brutally hard. I did the last two tours of duty over a long distance, with long stays away from my young family. Perhaps because it was such an arduous learning experience, I came away a little beat up. Along with caring for and losing three parents over the course of about twelve years, I also lost the majority of my close, Swedish family of older relatives in the same span of time.
I have finally right-sized my role as family caregiver and it has made a tremendous difference. I understand how to use the resources out there to help me, rather than lead me around like a bull with a ring through its nose. I've learned that I don't have to do everything and I don't have to do anything perfectly.
The binder system was my answer to staying on top of doctors, caregivers and volunteers, both in person and from 2400 miles away. The binder helped me with the countless details, the distance, the time and money, attorney's and accountants, finances and bills, all the secret handshakes to caring for my loved ones. It will help you too. The worksheets and forms are the same ones I built for myself and have used with others. They will lead you to solutions and help you build your village of helpers and supporters who will get you where you need to go.
At this date, over 65 million Americans are caring for aging relatives. The good news is I finally figured out why I had to go through so much as a caregiver... so you don't have to. You are not alone.
George & Diane
My dad and his third wife, Diane comprised my longest continuous caregiving experience, about 10 years. I lived in Kentucky on a 42-acre horse farm I owned and managed. I had two young boys and managed my husband's electrical contracting business too. Dad and Diane lived 2400 miles away on an island you could only get to by ferry. It took an entire day for me to reach them.
The caregiving started when my dad was diagnosed with cancer in his jaw. He was simultaneously suffering small strokes that would cement the damage in his brain from years of alcoholism. The result would be dementia with short-term memory loss and an extended operation to replace the bone in his jaw and remove cancer from his tongue and throat. It was a seven-year process. He lost the ability to eat solid food.
After living through my dad's horrible experience, Diane self-diagnosed a tumor in her breast and secretly decided not to have it treated. She kept it well hidden from me and everyone else. I was accustomed to visiting for a few weeks every two or three months. She kept changing my plans until I finally showed up with the grandkids in tow. After three weeks I sent the boys home and stayed to find out what was going on with her. The cancer had already spread throughout her body. Within a week she was bedridden. My most heartbreaking role was defending her right to die within the medical community. She would die six weeks later.
What to do with Dad? We tried moving him to an assisted living facility near us. We lived in a two bedroom house at the time. His dementia
presenting as short term memory loss left him confused and unable to cope outside his home, so I moved him back. I found care givers who would come to the island to care for him. He was on hospice care for almost two and a half years when they finally decided that perhaps he had longer than two to four months. He passed nine months later.
You will hear all the messy details of my experiences through the blog. Here on the about page, I'm only offering the big picture, otherwise this page would go on forever!
My mother developed breast cancer in her late fifties. It was caught quite early and after a round of chemo and radiation, she was clear. I blame years of heavy-duty birth control and smoking. About five years later, she developed a funny growth on her scalp and a lump on her leg. She was diagnosed with lung cancer that had already spread to her bones. No treatment was offered. My mother didn't just smoke, she chain-smoked with multiple cigarettes burning throughout the house, a decades-long habit.
I was pregnant with my second son when she was diagnosed. When the doctor cleared me for flight, I jumped on a plane with my firstborn toddler and spent the next five months caring for my mom in Seattle while my husband moved us from California to Kentucky.
This caregiving experience was difficult because my relationship with my mother was somewhat strained. My mother was a wonderful friend to many, but a troubled parent. One afternoon an old family friend stopped by. I was on the floor with my big belly and toddler when our friend asked if my mother had any regrets. With barely a beat my mother answered that she wished she had not had children. We were a disappointment. Talk about a conversation stopper! This was not news to me, though I was surprised she'd said it out loud. My mother needed a lot. A lot of attention, entertainment, affection, time, energy, a lot. She was an empty well who expected children to fill the void.
I naively hoped we would find a closeness in her last months. I do know that I was there for her when she needed me. She was afraid of death and through many conversations, I was able to alleviate those fears and she passed away in peace.
My step-father, Norm, was perhaps the kindest person I have ever known. In my early 20's he fell down our basement stairs. He suffered a debilitating head injury that put him in a coma for three weeks. He would never be quite the same. He was required to retire early from his job as an engineer and there were many months of rehabilitation afterward.
About five years later, he was diagnosed with pancreatic cancer and passed about nine months later. Pancreatic cancer is not a kind way to go.
He had good insurance that provided hospice care. When the time comes, I highly recommend the people of hospice. In my opinion, you can't bring them in early enough. They can be a great help in guiding you and your loved ones on how to live life in a way that works for the whole family.