Parkinson’s Disease rode my father-in-law down the home stretch. It pushed him from in-home care to nursing homes in California and Oregon, then to a hospital room wired for life. He was plugged in. I badgered his doctor about how long Ken had if unplugged. He guessed two days, maybe. Not two months, or two weeks.
I brought Ken home. I’d be his hospice guy, his caregiver for two days, then a peaceful, easy, passing. I’d show the family how to do it right. Except he didn’t die. In Two Days Left I ask, Am I off the caregiving hook? The answer came in increments.
Two Days Left will inspire millions of baby boomers in the Sandwich Generation, middle aged people caring for parents and children. They will see the dynamics between my natropath wife and my English mother-in-law and co-caregiver, and two high school wrestler sons. And Ken. I kept a steady hand on the volatile mix.
Two Days Left explores new relationships between the healthy and ill; between two generations of parents; between doctors and confused patients. From Ken’s shocking brushes with death and Judy’s olde country strength, to Elaine’s fear that the kids were avoiding us, we battled Parkinson’s, cancer, and dementia, cheering wins and booing losses. Two Days Left leads the Sandwich Generation with an unflinching male presence in a traditionally female role.
Most home caregivers are not former all-American wrestlers and Army medics. Those credentials wouldn’t seem to promote gentle caregiving, but Two Days Left shows why they are suited for competitive caregiving. Ken and I found common ground in sports and boot camp.
I spoke in a measured tone I’d heard from Hall of Fame coaches and ass-kicking Army Drill Sergeants. I channeled enthusiastic pep talks and kind dress downs. Ken grew stronger, gained weight, and started talking, started really enjoying himself against all odds.
I have published non-fiction pieces on sports and caregiving locally in the Portland Tribune, Tigard Times, Oregonian, and Eugene Register Guard; nationally in Today’s Caregiver. I won top ten percent notice in the 2007 BlueCat screenplay competition for Flying Home, a script inspired by Ken’s service in WWII.
Two Days Left, The Beginning will be approximately sixty thousand words. It is three months from being finished. I have chapter titles and descriptions available.
Thank you for your time. I hope this will be of interest to you.
The demographic of book buyers and caregivers is the same, middle aged women. They will buy Two Days Left and share it with their friends to see how men cope with a unusual situation.
The population bulge of the Baby Boomer Generation is moving fast toward Senior Citizenship. They will buy Two Days Left as a guide to make better health choices for themselves and their spouses.
The tail end of the Boomer Generation may find themselves caring for elderly parents as well as their own children. They will be sandwiched between the two. They will buy Two Days Left to see how others cope with similar circumstances.
Elder care will grow in great demand. Two Days Left will show workers and care recipients new ways to achieve the goals of a better life.
Athletes will read Two Days Left to see how the competitive skills they learned for their sport transfers, or don’t transfer, to caregiving.
Parents will read Two Days Left to learn what to expect if they need the services of a family caregiver.
Two Days Left will enrich both the medical community and the care community, as well as the patients in each system.
Because Ken and I are both ex-military, the services will buy Two Days Left.
Europe and Asia will read Two Days Left to see how a multi-generation American family lives together in the ‘Old World’ tradition.
Five years as a home caregiver: Every day was a negotiation of care, food, and medication with Judy, my strong willed mother-in-law. She knew what was best for her husband, I knew what had to be done. I was the last gap between Ken and institutional care. Elaine knows what is best for everyone. I gently prevail by combining their ideas with mine.
Fifteen years as a youth sports head coach: From soccer and basketball, to football and wrestling, sometimes coaching two teams each season, I inspired athletes to play their best. I used the same motivational skills to boost Ken’s morale.
Former US Army medic: I was a military Emergency Medical Technician and ambulance driver. I met generals and admirals and government executives, though never on their best days. My Army experience helped me relate to Ken, a WWII Marine. My time as a Nurse’s Aide in a VA hospital added more tools to my caregiving kit. Those with military experience remember how boot camp changed them. I used our shared experience to change Ken.
High school All-American wrestler, college wrestler, Army wrestler: My high school and college coaches are both in the National Wrestling Hall of Fame. I achieved my honors by wrestling for national championships, and losing. Ken trusted my decision to help him walk when others couldn’t figure it out.
Twenty years as history museum cataloguer and manager. The most mundane objects are as important as the Crown Jewels once they become part of a museum collection. This knowledge influenced my attitude toward Ken. His life was as meaningful as anyone else’s. I reminded him of this on his down days to keep him up.
Why I’m the best writer for this story: In a combined family with care needs, managing the spouse of the loved one is important. Judy was my co-caregiver, but Ken’s illness left her without the mate she was used to. Keeping her emotions level during stressful times was often harder work than my caregiving duties with Ken. As her son-in-law I had a delicate balance between asking for her help and telling her what to do. Her English heritage made the most ordinary requests an adventure. My experience, coupled with the stress that any sign of faltering on my part would result in Ken receiving the twenty four hour care he needed in a nursing home, make me an ideal author for Two Days Left, The Beginning.
Wrestling With Care, Today’s Caregiver, January-February 2008
Ducks Need To Keep Wrestling, Portland Tribune, August 7, 2007
The Manners Of A Cage Fighter, Oregonian, June 12, 2007
Tigerettes Take Sports Fan To Another Level, Tigard Times, March 20, 2008
Flying Home, BlueCat Screenplay Competition, 2007
Patients benefit from talks, August 20, 2009
An Unplanned Exit, pt 1
An Unplanned Exit, pt 2: Stage Right
An Unplanned Exit, pt 3 Off Stage
A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard, by Suzanne Geffen Mintz
Ms Mintz, a family caregiver, wrote a book that “provides lessons from family caregivers across the country.” She has “deftly woven together self-help ideas and emotional guidance for individual family caregivers with an inspirational call to arms for health policy change.”
The biggest differences between Mintz’s book and my book, Two Days Left, The Beginning, are the lessons provided. I address problems from a ‘what do I do now’ point of view. I talk about asking for help, then how to cope when the help doesn’t perform. I address caregiving from a masculine perspective where asking for help goes against the grain, but I ask anyway. My style of caregiving is based on competition. For example, Ken, my care recipient and father-in-law, was enrolled in a Parkinson’s Disease study group. In the course of ‘what do I do now’ Ken went for an exam by one of the staff in the group, a nurse practitioner. This man treated Ken like an educational doll instead of a person, and then rearranged his medication schedule. How does a caregiver protect against such aggressive behavior from professionals?
The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your, by Gary Barg
Mr. Barg addresses the stress of caregiving from a traditional point of view. I take a more direct aim in Two Days Left, The Beginning. Trust is the strongest bond between caregiver and loved one in home caregiving. My family trusted the doctors when they said Ken had two days to live. When that proved wrong, I trusted my ability to work with him based on my background as a medic and wrestler. Two Days differs from The Fearless Caregiver by establishing trust with the care recipient after gaining the trust of my family members. By using a team concept, I pulled the family into caregiving without missing the events in their lives.
Men as Caregivers: Theory, Research, and Service Implications
Kramer, Betty J., PhD; Thompson, Edward H., Jr., PhD
Where the authors edited a scholarly work on Men as Caregivers, I was the male caregiver. To increase my difficulties, I was a male caregiver to a former WWII Marine who was also my father-in-law. Adding another layer of challenges, we were living as a combined family where two strong women, my mother-in-law and my wife, played care roles that frequently conflicted with my ideas. Two Days Left embraces the idea of the male caregiver, yet spins it away from the caregiver / care recipient relationship. Instead, it is about two guys hanging out as if they had nothing better to do. With this approach, others may learn a calmer path through the caregiver’s day.< /o:p>
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, by Carol O’Dell
Two Days Left, The Beginning could be called Fathering Father for it’s male caregiver and male patient focus. Reading Carol O’Dell’s work, contributing to her blog, and speaking to her on the phone has shown me the greatest difference in our stories. She brought her mother into her family and started from there. I had already seen my father fade away to where he couldn’t recognize me at the end; seen my wrestling coach on his last day in the hospital. I still visit my mother with her cancerous brain tumors. Two Days Left takes caregiving to a whole new level when two families collide in a new house, with my mother-in-law and wife living under one roof again, and my teenagers adapt to life in an upscale neighborhood instead of our regular ranch. Watching my in-laws do their care dance, with his progressive oblivion and her sense that he wasn’t that bad, went from institutional care to home care once he was given two days to live by his doctor. Where Carol O’Dell made a commitment to her mother for the long haul, I volunteered for two days that were the beginning of an unexpected long haul. At times I was caregiver to a dying man, an elderly woman who at different times elected to have surgeries on both shoulders and both wrists, to an alternative medical provider wife running her own business, to the athletic and academic dreams of two teenage boys, and to my own ambitions. This was a lot of meat on the bread of the sandwich generation.
A care network of Aides, Nurses, and family caregivers runs through every community in America. Care staff and recipients are a natural audience for Two Days Left, including private care. In short time every family will know someone with care needs looking for solutions. Two Days Left strives to ease the burden of communication for both caregiver and care recipient.
The up-side of caregiving is the altruistic sense of doing the right thing, of doing a good deed. The down side is the day to day reality of working with people who won’t get any better. Where do these two opposites meet? Two Days Left puts them in the world of sports where activity is measured and used as a baseline for competition. Coaches and athletes and sports fans live for competition. Two Days Left puts caregiving in the game.
How often have you seen a man holding a baby in fear, as if it’s delicate glass. Men with old people have some of the same characteristics. Two Days Left invites men to be more involved in caregiving, that caregiving is a manly choice for them.
I believe Two Days Left will serve as an inspirational message, a how-to manual, and a self-help guide. Readers will join me during my crisis of doubt and see how I overcame it. They will be in the room during medical exams to see how to fend off unwanted treatment. They will experience catastrophic emergencies and learn where to look for inner strength.
TWO DAYS LEFT, The Beginning
I knew the pose, chest to knees in a wheelchair. My father-in-law sat that way. Parkinson’s held Ken down. For some nursing home folks, it’s the best they can manage. I smiled toward the front desk staff the first time I walked down his hallway.
I took a knee beside him.
“Kenny, I’m back. It’s Dave,” I whispered, rubbing his calf.
“If you straighten these legs out you’d look just like an Olympic diver. You’re an Olympian.”
His forehead moved slightly on his knees, maybe a nerve twitch. I leaned forward and looked at his eyes wide open.
“How long do you think it’ll take to get you out of here? I looked around. Only way is out the front. I’ll scout it some more. Until then, be ready. If you’re not ready, get ready.”
His forehead moved just so slightly on his knees, maybe a nervous twitch.
I was aiming for one part The Great Escape and one part The Dirty Dozen.
“Are you Steve McQueen, or Jim Brown?” I asked.
Ken was a WWII Marine. He played football. He knew the game. He was the Oakland Raider fan riding the big motorcycle with a naked lady painted on the gas tank. He was Jim Brown and Steve McQueen.
Why break a loved one out of a nursing home? If they can’t leave on their own, you need a plan. You need to do it right. The staff in modern nursing homes, especially the ones with AZ units, keep a sharp eye on the population. They check beds and sign out sheets. Yet there’s always stories about an elderly person missing for a week.
If they can get out, so can Ken.
You’ve read about family members kidnapping a loved one out of a nursing home. If it’s in the news, it means they got caught. If it’s kidnapping, it usually means family problems, otherwise why go through the trouble. I slipped Ken out of his nursing home and didn’t get caught. And he didn’t have family trouble. Parkinson’s Disease was enough trouble.
This is how I did it, but first:
I knew Ken twenty years before he got sick. We met before I started dating, then married, his step-daughter Elaine. I’d been Ken’s primary home caregiver two years when Elaine said we should do a big family trip before the kids got too old. I argued that they were already too old. Both her parents’ families came from England. Her Dad died and her Mom remarried. Elaine was the only girl in the new world.
“We’ll stay with my Dad’s family in Cambridge and my Mom’s in the south. I’ve got it all figured out,” she said.
“Have you told Tyler and Dylan?”
“We’ll tell them together.”
Two years of caregiving with my mother-in-law Judy, my wife Elaine, and our two teen boys made a trip anywhere sound good. I didn’t want to leave Ken, but I had the feeling Elaine and the boys were going whether I did or not. They needed my protection.
We found local adult foster care for Ken and spent six weeks in England. We visited Judy’s family while she visited Ken each day. She stayed beside him in every place he’d been since he got sick. When we called from England, she said Ken was fine.
After I got back I learned he had fallen down the first night in foster care and spent the next six weeks in the nursing home. Judy wanted us to have a good time so she left that part out, an omission of love. I would rescue Ken from the nursing home and bring him back home. At least that’s the plan.
Once I’d seen the daily routine in the home a few times, I got treated like a regular. I didn’t mention I’d been Ken’s caregiver, or that I knew more about him than any other person alive, except Judy. I just watched the staff do their job while I spent room time with him. Or hall time.
The staff at the home recognized my type. I wasn’t there when he got admitted. As far as they knew, I was in town on a guilt trip to visit the old man. I lowered my head and nodded when I talked to the staff, like whispering in church during prayer time. I wanted them to know me as a calm, shy man.
I spoke quietly with Ken in his room, or jack-knifed together in the hallway chairs.
“Man, some of these are sick people. What did you catch while I was gone? Parkinson’s and stomach cancer wasn’t enough? Remember when they said you had two days to live? Remember that one? Two or three years back you had two days?
“I’ll be honest, you looked better when you had two days than you do now. But you’ve got the same thing you had then, right? Nothing new? No problem. First we get out, then we go to work. You ready to go to work?”
His forehead moved just so slightly on his knees, maybe a nervous twitch.
I visited Ken a week before Judy made a doctor’s appointment. I wanted a nice, calm progression of events. No rushing. We drove the freeway to the doctor’s clinic.
“That’s the plan,” I told her. “He rides over to the doctor’s office with the wheelchair transport crew, then he comes home with us.”
“Just like that?” she asked. “The nursing home has to discharge him. You can’t just take a person away, can you?”
“I can’t, but you can. We’re all set at home. We have all we need. The hospital bed, wheel chair, food, the works. Got diapers and pads and band-aides, you and me. All we’re missing is Kenny.”
“This doesn’t seem right,” she said.
Judy was seventy eight, raised in Street, County of Devon, England. Her first husband, Norman Bayes, came from Cambridge. They moved to America for a new start after the war and raised their family in LA. When Norman died twenty five years later, Judy started over with Ken.
She knew grabbing a man out of a doctor’s office wasn’t right.
So did I, but I was ready to put myself in harm’s way. Ken was already there.
We turned off the freeway and found the entry to the clinic parking lot. The wheelchair van pulled in after I locked the car. They opened their back doors. Kenny sat strapped upright in his chair, head hanging.
I took the wheelchair handles and rolled it off the lift platform; told the guys I’d give them a call when we were done with the doctor.
I had not touched a wheelchair in six weeks. What do I do? Then it all came back to me. I turned around and pulled the chair over the smallest bumps and imperfections. I used to run the chair over things when I first started caregiving, giving Ken a big bump over every branch or rock. I leaned to be more gentle. It’s a kindness we learn to give others.
While pushing a wheelchair with a weakened person across a parking lot, keep their hands out of the spokes.
Judy signed Ken in at the front desk while I wheeled him toward a corner of the room. A nurse called his name before I got settled. She checked his pulse and blood pressure in an exam room. I could feel my heart thump. As soon as the doctor showed up, I went into action.
Dr. Pad treated Ken fairly. He extended himself when I met him two years earlier. He said to think hard the first time I asked to bring Ken home.
“Doctor, how long does Ken have?” I asked.
“I can’t say.”
“Would you say a day? Two days?”
“You can never tell for certain.”
“Ballpark it. Round it off. He’s not the healthiest guy around.”
Ken was in the hospital room with circulation pumps and IV tubes, losing a fight against pneumonia.
“He may have two days. Maybe more. Maybe less.”
“He doesn’t look so good, I can see that. Thank you doctor. Two days? He deserves a good death. For Judy. She’s been through it all too many times.”
“Maybe more, maybe less.”
I didn’t hear five years. Didn’t hear five months. Two days. How could I not be his caregiver? Judy sat beside Ken’s bed, resting her hand on his arm above the IV sites. He was lifeless. I brought him home for the first time.
Two years later, it’s not as easy. Judy was right, you can’t just take a person away from a nursing home. I counted on Dr. Pad to do the right thing.
He came into the exam room while the nurse finished up. Judy answered the questions he asked Ken. By his manner he knew Ken’s reality. Parkinson’s was coming faster and faster. This was the final spiral.
I stepped out of the room.
When Dr. Pad opened the door I waved him over to my side of the hallway.
“I’m going to ask you something, Doctor. I don’t want to put you in a spot, but maybe others shouldn’t hear this.”
He motioned to a file room.
“What is on your mind, David. Is Ken glad you are back?”
“I’m not sure what Ken’s thinking, but I’d like to know. He had some ideas before I left. I’d like to get him back.”
“He is in very grave condition. I’m not sure the nursing home should have released him for this appointment.”
“I don’t want him going back. I want you to release him to me. He’s not doing well in the nursing home. If you can’t release him to me, then please call the police. I’m here to take him home, but I don’t want to disrupt your clinic. Go ahead and release him to me, or call security. I’ll go quietly either way. I’ll wait in the room with Ken and Judy. She knows what I’m doing.”
Dr. Pad nodded his head.
“I’ll make some phone calls,” he said.