Caregiver's Survival Guide

Caring for Yourself While Caring for a Loved One

Ellie Crowe

• Publisher: Skyhorse
• Year: 2018
• ISBN:
  9781510731783
• Topic: Médecine
• Subtopic: Déficiences physiques et handicaps

Caregiver's Survival Guide is based on Dr. Robert Yonover's personal experiences. While struggling to become a successful scientist and inventor, he also was primary caregiver for his paralyzed wife for more than twenty years and raised their two children. Yonover takes you into the throes of his life as a caregiver, husband, and father, offering guidance and hope through his story. He provides advice on:

• Dealing with heavy news
• Handling day-to-day challenges
• Holding on to the foundation of your relationship
• Taking stock of finances
• Adapting and enjoying life
• Staying sane
• Maintaining a social life
• Fighting for your rights Through Caregiver's Survival Guide, Dr. Yonover will equip other caregivers who face similar physical, mental, social, and financial challenges with tips and guidelines from his own experiences and other experts to help make their situation survivable.

Section 1

Two In Deep

Never above you. Never below you. Always beside you.

—Walter Winchell

The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day.

—David Foster Wallace

1	Hold On to the Foundations of Your Relationship

Whatever your caregiving role may be (spouse, parent/child, child/parent, friend/friend), I believe it is important to hold on to and respect the foundation and origins of that relationship since in many cases, it will drive how you approach surviving what you are about to encounter.

Happy, Loving Couple

My wife, Cindy, and I were a happy, loving couple with two small children. We had it all. Cindy was my soul mate and the love of my life. We lived on the water in Hawaii. Cindy, with her dark hair, dark eyes, olive skin, and killer body, was as beautiful as the day I first saw her scoff at me from her position of hierarchy in high school. Cindy was “cool” in high school and I was not. She got to hang out on the wall outside of our high school with the kids who smoked cigarettes, and I was banished to the nerdy kids in class or the wannabe jocks on the basketball court. It wasn’t until college that I pulled off a miracle and matured enough to capture her fancy after years of being “friends only.” Cindy had the brains and toughness to match her looks. She could hang with the guys and was an independent force. We had an incredible relationship that included sex that made the earth move; she was by far the sexiest woman I had ever met.

Prior to having children, Cindy and I lived out our geographic fantasies and made it to the magical places of our dreams: Africa, New Zealand, Costa Rica, and Indonesia, all from our home in the Hawaiian Islands. With a master’s degree in counseling and social work, Cindy had ascended to the upper echelon in the Hawaii abused children and domestic violence scene. Her energy was so powerful that she had evolved into part-time lobbying for social causes with the Hawaii legislature, always succeeding in getting money appropriated for the abused children and battered women.

My world was off the chart. I had come to Hawaii to get a PhD in volcanology and was fortunate to be one of a few people in the world to work on ocean floor volcanoes by personally going down two miles deep in the Alvin submersible. If that wasn’t fortunate enough, I monitored active Hawaiian volcanoes and performed laboratory work at NASA’s Johnson Space Center and at the Massachusetts Institute of Technology. The icing on the cake was my patented invention of the See/Rescue Streamer, a revolutionary rescue device that became approved and used by all branches of the US military and some foreign militaries. It saved multiple lives!

At home, things were going very well. Our relationship was perfect and our son and daughter were beautiful and gifted. With both of our careers booming and with my successful home-based invention laboratory in full swing, we had enough money and time to raise our elementary school–aged children firsthand. The mothers in our circle referred to me as “Mr. Mom,” but I pointed out I was actually “Dr. Mom” since I had worked very hard for that title!

I was an avid waterman, which included surfing serious giant-sized waves on Hawaii’s famed North Shore. Cindy’s passion was long-distance running. She pushed herself hard and was quite an athlete. Her goal was to run the Honolulu Marathon.

During an early autumn marathon training session, Cindy’s left leg started to drag a little. That first limp was the beginning.

2	Dealing with Heavy News

Brain Stem Lesion

The doctor sat us down and gave us the bad news. Cindy had a lesion on her brain stem. The MRI showed it, and the prognosis of multiple sclerosis was not good. That was a heavy piece of news. After the initial shock, we reflected on how fortunate we were to have had the incredible life we’d experienced up until then, including the fact that at least our children were not sick—that would have been something we could not begin to fathom. We were in our midthirties, and we both had experienced overachieving, exciting lives to date, both before and after hooking up. Being the hard chargers we were, we were not going to take this prognosis sitting down. We were going to fight this illness.

Telling Your Family and Friends

A very difficult task was telling Cindy’s family. Cindy was the star of her family and the news rocked her parents’ world. They immediately jumped on a plane from Miami and tried to do their best to help us.

It’s always hard to be the bearer of bad news; however, this was especially hard since Cindy looked so healthy and perfect. No one believed she would ever get sick, especially at the young age of thirty-six! I am great at rationalizing, so my strategy was always to tell people and try to minimize the horrific aspect of the news by including the positives and potential for her to get better or at least keep the disease at bay. I cited the great progress they were making with MS drugs and treatment and assured people that we were not going down without a fight. Nevertheless, no matter how much you sugarcoat it, the news was not good, and it brought about the full range of responses.

The one thing I learned from telling people bad news is that you have to let them react their own way. You can try to guide them; however, they are going to take the conversation and interaction to a place they feel most comfortable. In a manner similar to the way in which people would later look at Cindy in a wheelchair with a mix of horror or pity, the same thing happens with conveying bad news. It was like going through individual mourning sessions with each person and listening to how they projected their own feelings and fears onto our challenging medical situation. Some people have knee-jerk reactions and want to do radical things to try to save her, while others are just paralyzed by the news and become almost catatonic. You really learn right away what people are made of and what kind of personal trauma and experiences they have gone through themselves.

The good news on this front is that the process of telling people helped us process the news ourselves. At first it is surreal, but after telling family and friends it really hits home, and you are forced to deal with the reality right away. I also personally became empowered by the shock I felt from the reaction from family and friends in that it made me want to survive this ordeal for all of us. I was always a person who liked challenges, especially as an underdog, and this was the ultimate challenge that would test me to my core on all fronts! There was no way I was going to wimp out and let Cindy or our kids down. Game on.

Cindy and I had very different upbringings. I lived and breathed sports, including potentially deadly interactions with nature and severe guy-to-guy personal verbal attacks. Growing up, my buddies and I had cut-down fights for fun on the streets every night. Cindy had three sisters and never competed in team sports, verbal matches, or battles with nature. I was used to pressure situations; she was not. And like all those thrust into the roles of care receiver and caregiver, we had no idea of the pressures looming on the horizon.

Short-Term vs. Long-Term Conditions

Whether you are at the beginning of a battle with MS or another physical problem or you are dealing with the dementia of a family member, try to take the long view. I guess it’s a lot like Alcoholics Anonymous, where it’s “one day at a time.” Each day has its minute-to-minute challenges, so try to pace yourself because you are in for a marathon battle on all fronts.

In our case, Cindy’s MS happened gradually, preparing us for the endgame. In the case of MS, it was the loss of mobility, limb by limb, resulting ultimately in complete paralysis and the wheelchair over several years. If Cindy had gone from doctor’s diagnosis to wheelchair within a few months, it would have been more devastating. It was much more doable to get used to the limp, the cane, the walker, on the way to the wheelchair. I think dementia and Alzheimer’s are also similar in that things may start slow and build to a (bad) climax with time.

Those who become caregivers instantly (e.g., paralysis by car wreck) probably have the hardest time adjusting. Our gradual downward spiral to the wheelchair was more palatable, just like the ten months of pregnancy or the stages in our children’s development from baby to toddler to shit-talking teenager to respectable young adult (ha!). Humor and perspective—don’t try caregiving without it.

Humor, interjected into situations by me more than Cindy, as I needed a way to survive the day-to-day serious challenges that we faced, was a constant presence in our relationship. It was shocking for people who didn’t know us to see how we interacted, with serious black humor and in-your-face banter. It was kind of like Seinfeld on steroids—with real issues. Cindy was always a tough character with an excellent sense of humor—we were testing these limits every day. If the public could handle it, we could easily have formulated a sitcom that could really normalize the existence of wheelchair-bound people.

In the early days, it was interesting to note how people physically reacted to seeing someone in a wheelchair. The reactions ranged from people completely ignoring us as we went down the street to over-the-top sympathy—both were a bit of a bummer, but we got used to it. When you coupled the visual with our hardcore bantering, most people just ran for the hills.

I think one of the factors is that people who are not dealing with a serious illness can’t even imagine it. People were basically in shock when they interacted with us. Plus, we were shockingly open about everything and left nothing inside our heads to eat away at us. Cindy taught me early on, in the non-MS days, to let all my feelings out and not keep them in where they could become toxic. That was a critical lesson; however, I think Cindy sometimes regretted it, as I don’t let anything fester inside me. This led to impromptu arguments and discussions at occasionally inappropriate times.

3	Dealing with Daily Challenges

Loss of Mobility and the Dreaded Wheelchair

Cindy and I were in our own fight, fighting off the ravages of MS as it progressively took away her limbs. She resisted using a cane for as long as she could, but needed one to support her right leg that was dragging more and more. Cindy always kept her sense of style and used only a hand-carved cane from Africa. Ultimately, however, she needed a walker to support herself and not fall down while she fought to propel herself unaided.

The thing we fought for the longest time was the dreaded wheelchair. Not accepting it as a tool was getting hazardous because Cindy was starting to fall more and more when only supported by a cane or walker. Cindy was a proud fighter, and she was not giving in to it fast. Another complication was that she was starting to lose the use of her arms—one at a time. She could barely feed herself with her good arm and needed a special spoon she could grip with her weakening hand. The doctor warned us that once she lost her good arm, we were in for an order of magnitude in change in lifestyle, since she would then require massive amounts of care to achieve the most private actions like feeding herself and going to the bathroom.

It had been about a year since Cindy’s first fateful limp that signaled the onset of our struggle; however, we were now going deep into the repercussions of her progressing paralysis. There were many challenges to our situation from both of our perspectives. First and foremost were the basic physical necessities that are obvious for a person rapidly approaching complete paralysis.

Cindy’s physical needs required that I essentially become her hands and legs. This meant that Cindy, once a proud, athletic, semimacho powerhouse, now had to rely on someone else to do the most basic things. Yet she looked as beautiful and as vibrant as ever.

We scrambled for ways to cope with our changing lives. Not wanting to make a big deal of our difficulties, we went to restaurants or parties early so I could transfer her from her wheelchair to a regular chair or couch so she would be situated before anyone else arrived. Another important factor was that Cindy, and even more so our daughter, are the densest humans I have ever lifted—they both look light, but they are extremely heavy and hard to move. That made my task of becoming Cindy’s arms and legs even more challenging on the physical front alone.

Another glaring issue was that I am not the most physically gentle person—I was infamous for breaking things in the laboratory. I have a heavy hand and touch, as I sometimes don’t know my own strength. Combining this characteristic with Cindy’s increasingly sensitive body conditions made it even tougher to lift and transfer her without hurting her. To add insult to injury, I am six feet one in height, and Cindy is only a little over five feet tall; therefore I had to bend over to do most any physical action for her.

Developing My Feminine Side

Although my feminine side is heavily developed after being raised in a progressive family with a feminist mother, I still was forced to learn the ways of a female. Starting with the basics, I knew what to do with her private parts from a lovemaking perspective, but not necessarily from a sanitation angle—especially given the difference between indoor and outdoor plumbing.

On a practical front, Cindy’s physical limitations and my taking on the task of becoming her arms and legs made for some challenging situations—especially when it came to the public bathroom. This is true for any male caregiver of a female ...