92: Unexpected Caregiver

92: Unexpected Caregiver

From Chicken Soup for the Soul: Family Caregivers

Unexpected Caregiver

A Note from Joan

Larry Shaps was 31 years old, single and living in Atlanta, Georgia. Larry had established roots there and had a wonderful circle of friends and thought he’d never leave. However one day Larry got a call from his older brother Scott saying, “I need help.” Scott had been diagnosed with ALS, also known as Lou Gehrig’s disease—a progressive illness that affects the brain and spinal cord. Scott was living in New York with his pregnant wife who he said was having a difficult time coping with her husband’s dire diagnosis.

That call from his brother Scott would change Larry’s life forever. It didn’t happen immediately, but ultimately it turned into a 10-year ordeal. Larry uprooted his life, and so did his brother Robert, who was living with his family in Massachusetts at the time. Both brothers would end up moving to New York to care for their ailing brother, Scott.

I think it’s fair to say that most of us expect that we will end up taking care of an ill or aging parent one day, but not necessarily a sibling. When I met the Shaps brothers and learned of their family caregiving journey, I asked if they would share their story with all of you. I felt privileged to have the opportunity to interview Larry and Robert, and I will forever be inspired by their story.

Joan: Larry, tell me a little bit about your brother, Scott, his ALS diagnosis and when you first learned of it.

Larry: It took a long time to get a confirmation that he had ALS. Scott was having symptoms but they had to rule out other things so it was a long process. During that time when Scott reached out to say, “I need help,” I knew he was scared. He was nervous and needed our support.

Joan: Scott was married when he took ill, and both of your parents were alive at the time of his diagnosis. You were the youngest of four brothers, and yet you say that you were “the obvious choice” to be Scott’s primary caregiver. Why was that?

Larry: I was the single one at the time; my brothers Robert and Michael both had a lot of responsibilities with their families and their careers, and my parents were dealing with their own health issues. So it seemed logical that I would be more involved.

Joan: However, Scott was married at the time. Why didn’t his wife Kathy take over Scott’s care?

Larry: In the beginning Kathy was there for Scott, but she was also a new mom and as things progressed she couldn’t do it anymore. I attended many ALS support meetings with Scott and we learned about the dynamics of couples dealing with this illness. It seems that there is no gray area when it comes to supporting a spouse with ALS. There’s a point where they can handle it or they can’t. If they can’t, they check out.

Robert: We were surprised and disappointed that our sister-in-law decided she couldn’t do this anymore. We knew we had to step in.

Joan: Larry, when did you realize that you were going to have to uproot yourself and move from Atlanta back to New York?

Larry: I thought about it for a long time. I needed to be able to support myself. It just so happened that I was approached with a job opportunity in New York so that I could move back and be near Scott.

Joan to Robert: You and your family were living in Massachusetts where you were a school administrator. However you were also finishing up your doctorate degree at the University of Pennsylvania at the time, traveling there on weekends. That’s a lot for anyone. How did you incorporate Scott’s needs into all of this?

Robert: It was not a good situation. I was completing my studies at the University of Pennsylvania. However I was also traveling with Scott to see experts in several cities while we were trying to determine the diagnosis. Scott was the warmest, nicest person on earth so the idea that he was diagnosed with a terminal illness was overwhelming, and when he asked Larry for help, we sensed what it meant and asked, “How can we do this together?” Fortunately I moved to New York for a job opportunity.

Joan: We often hear that caregivers are working full-time at another job, which makes it even more difficult being torn between work responsibilities and caregiving. You had your job and also your studies on the weekends. How did you juggle it all?

Robert: That was the hardest part for me. Though we had wonderful caregivers, I never knew if I would be spending my weekends working on my doctoral dissertation or in a hospital with Scott. Often he would end up in the emergency room for two to three days at a time. Larry was the first line of defense and I was there after.

Joan to Larry: You’ve actually equated taking care of Scott to “running a business.” Tell us what you mean by that.

Larry: Scott’s care became quite complicated to manage. I printed out caregiver schedules. He needed 24-hour care and we had six to eight nurses at a time and often had to swap out people who couldn’t work certain days or certain nights. There were also personality conflicts—dealing with nurses who didn’t like each other. If an aide couldn’t come in, we would end up sleeping on the couch.

Joan: You have both said that you always wanted to make sure that you were “on the same page” as Scott regarding his end-of-life wishes.

Robert: Actually, Scott was really clear about his desire to remain in his home.

Larry: But there was a lot happening at once. Scott had an incredible will to live and a fear of dying and that actually made it really difficult. He was also deteriorating quickly, and the disease made it difficult for him to communicate with us. There was a lot of negotiating to do and he would “push back” on decisions, even if we had no other choice.

Joan: When Scott was no longer able to speak, you came up with a plan.

Robert: Scott went through a series of all kinds of efforts to communicate, from using his big toe, to eventually using his eyes to spell words. Larry had perfected a system of left, right, yes and no to actually spelling out words. It was like speaking in another language. You would sit in a room and watch Larry use a transparent sheet of letters to spell out sentences and Larry could actually understand what Scott was saying to him. It was frustrating for the rest of us who didn’t master the technique, including my mom. But it really was quite remarkable.

Joan: You mention your mom. You’ve said that she really wanted to help but that she was also dealing with her own health issues.

Robert: Mom meant well but that was really the third rail. A mother’s instinct never goes away. However I spent more time negotiating with my parents to let Larry be the primary caregiver of Scott. We had to make her accept that we were really in charge.

Joan: What was your biggest fear in caring for your brother?

Robert: The greatest fear was “what happens when Scott gets locked in.” Scott had a young daughter and he wanted to live as long as possible for her. A turning point was when we pleaded with him to get a feeding tube and he resisted. Research clearly showed that this helps keep you ahead of the deterioration, but for Scott the idea of a tube was unbelievable.

Joan: When you become a caregiver for someone with a debilitating illness, you never know how long it’s going to go on. You probably never dreamed that it would be all-consuming for 10 years, financially, emotionally, logistically.

Larry: We did talk about this when we had family conversations. And as the years went on, there were definitely moments where there was resentment and anger. It was very complicated to manage Scott’s care, including the financial aspects. We gave Scott lots of love and care, but there is still the other human aspect of being frustrated. And then we had a tremendous amount of guilt. We were struggling with trying to make sure that we abided by his wishes but we were also trying not to let him suffer.

Robert: There were times when I thought Scott was being unreasonable; however then we would look at each other and say, “Look who’s in what shoes?”

Joan: It was a long 10-year journey for you guys until Scott ultimately succumbed to the ALS. What advice would you give to others who are going through a similar experience?

Larry: Have a support group or have friends and family that you can lean on. It is overwhelming. Take care of yourself because if you can’t take care of yourself, you can’t take care of the patient. Things can happen very quickly and I think it’s important to be as proactive as possible.

Robert: Make sure that you communicate early and often about what their wishes are for their care and their end of life.

Joan: In retrospect, is there anything you would have done differently? Anything that you wish you would have done?

Robert: Yes, I would have videotaped Scott a lot more. I wish we had captured Scott telling his daughter the story of his life. She was too young to realize what a special person he was. We all wish we had captured more of Scott while he was still in good health.

Joan: You guys are great role models to other families. We appreciate you sharing your story. You are truly inspiring.

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