Updated: Dec 26, 2018
The following story was submitted by David Gerber, of Potomac, MD, who originally delivered it to a discussion group on Aging, Death & Dying in May of 2017 about two-years after his wife, Ryna, had lost her long battle with a rare disease. They had been married nearly 42 years. David believes he has benefitted greatly from hearing others tell their stories and has agreed to share his with us. (An addendum follows).
First of all, I’d like to applaud you for taking part in these discussions and talking openly about aging --and, especially about death and dying. These, of course, are subjects that many people find difficult, if not impossible to talk about … or, for that matter … to even think about. And, I was among them, until recent years, when I was forced to confront these difficult realities. My wife, Ryna, would have actually gotten a good chuckle at the notion of my talking openly about these, or any other, such personal matters, something she often chided me about my lack of willingness to do. But, here I am. And, perhaps there are aspects of our story that some of you will find relatable and, I hope, helpful to hear about.
My own experience with death had been rather limited before I lost Ryna nearly two years ago. I had lost grandparents when I was young and lost my parents later on at the time that I was living far away, so other family members dealt with the worst of it. Those experiences were painful, of course, but I now realize that that kind of pain was relatively minor and brief compared to what I would later experience. And, fortunately, until the illness that would eventually take Ryna’s life, any health issues among our immediate family -- Ryna, our two daughters, and myself -- were relatively minor. But that would change.
By the time Ryna’s first symptoms emerged in 2009, we were empty nesters who were enjoying our lives and our careers. We had been together since meeting in college, nearly 40 years earlier. Our girls, Erica & Alison, were on their own and both were living out of town. The two of us were spending many weekends at the Delaware shore, a place Ryna loved dearly.
I won’t go into details about her illness. But, suffice to say, Ryna suffered from a rare, progressive and non-treatable neuromuscular disease that, over the course of 7 or 8 years, gradually robbed her of her independence, many of her motor functions, and eventually of her life.
Ryna was a proud, caring and very independent woman. I often say that she did most of the thinking and planning for both of us … and, to a large extent that was true. She was a wonderful mother … and a dedicated social worker. She devoted most of her career to geriatrics. Ryna was someone who always -- even as a young woman -- enjoyed being around older people, and they loved her. Being forced to give up her job, several years into the illness, was a difficult moment for her.
By then, because of her disabilities, it had become necessary for us to move to a one-level home … and, by then, our lives had become an endless series of appointments with doctors and physical therapists. Endless tests and medical procedures. I was still working full-time while juggling Ryna’s needs. When she could no longer care for herself, in her last couple years, I arranged to do most of my work from home. For my occasional visits to the office, I brought in home health aides...which was a mixed experience.
I know this all sounds very depressing, and to a large degree it was … for both of us . But, this all happened very gradually… and there was a lot that was normal and even fun during those times. Ryna was always level headed, strong willed, and maintained her wonderful sense of humor about most things. We got out and about as much as we could, to do things that were not medically related. We even did several trips, to Europe and South America, while she could still get around with a cane. Later, we took advantage of handicap seating at concerts, movies, baseball games. At home, we played games and watched our favorite TV shows together. In the later years, we actually enjoyed the frequent in-home visits from the physical therapists, the occupational therapists and counselors.
Ryna was especially thrilled when we learned that our daughter, Erica and her husband decided to move back from Los Angeles after she became pregnant. Having them here added a lot of joy to Ryna’s life, especially since they were living with us in our home when our grandson was born and through his first year. Around that same time, our younger daughter, Alison, got engaged, which also helped lift Ryna’s spirits.
Ryna and I had always divided up household chores pretty evenly. But, worried that I would eventually be on my own, Ryna insisted on training me how to do all the things she usually did, things like grocery shopping and cooking. I did learn, even if reluctantly. I was still not ready to acknowledge that she would one day be gone. As time went on, she continued to be the “brains” even when I had to be the “hands”. Little by little, more and more tasks shifted over to me, eventually including her personal care. I was doing things for her that I could never have imagined being able to do. But, I now realize, it just happens. You do what you have to do. And, I would have gladly continued doing so indefinitely, if I could.
I should mention that years earlier, we had taken care of a some very important matters, at Ryna’s insistence -- creating our Wills, Advance Directives and Powers of Attorney. These were things that I had thought little about but that Ryna knew from her work -- with older adults and their families --were absolutely essential. She saw what happened when people didn’t have them.
Throughout most of our ordeal, I tried hard to be Ryna’s cheerleader. I was constantly trying to convince her that the diagnosis might have been wrong…or that some miracle cure would suddenly be found. Ryna’s outlook was mixed and curiously contradictory, at times. Naturally, she was often depressed and didn’t want to go on living the life that had been dealt to her. During the last year or so, before bedtime she would often say she hoped she wouldn’t wake up in the morning…something I never wanted to hear. It often made me angry when she said it. On the other hand, Ryna continued to think about plans for the future: exploring handicapped vacation options, talking about things she wanted to do with our grandson when he got older. Even when she knew her days were numbered, Ryna couldn’t pass up a good online-sale. One day, she ordered a bottle of her favorite French perfume, even though she had enough left to last for at least another year.
For most of this time, Ryna’s condition had been considered progressive and debilitating but not fatal. But, once some new symptoms appeared, her diagnosis suddenly changed. Her neurologist became convinced that this was actually a different disease … one that was terminal … and that she was in her final months.
This was news I did not want to hear. But, Ryna, as always, was practical. She didn’t hesitate. She immediately asked for a referral to Montgomery Hospice with which she was very familiar. Through her geriatric social work, she had referred many clients there and held the organization in high regard – both their in-home services and their Casey House facility. She opted for in-home care, deciding that she preferred to die at home.
My only previous experience with hospice workers was when my mom was dying 15 years earlier, up in Rochester, NY, my hometown. I only spent limited time with them but was truly impressed with their dedication and compassion. It was the first time I was ever around people who could talk about death in such a matter-of-fact way, dealing with it as a normal and expected part of life, and calmly explaining -- in a very understandable way -- the stages that my mom would soon be experiencing.
And, the Montgomery Hospice staffers who jumped into action were no different. Various team members -- nurses, social workers, therapists -- were at our home within days to begin the assessment, form an action plan and walk us through what to expect. Ryna opted for a hospital bed to be brought in, not only for ease of care but because she didn’t like the idea of my being left with a bed in which she had died. They brought in a supply of drugs, taught me how and when to use them, sent over an oxygen tank and various other devices … all designed to help keep Ryna as comfortable as possible. Although they only visited occasionally, the team members were always available for consultation and could come back as needed. Ryna also benefited greatly from the visits by the massage therapist, the chaplain and the volunteers who would come by just to talk, tell stories or to relieve me so I could take care of some errands.
By this point, I had decided to take a Family Medical Leave from my job as a television production executive. In hindsight, this is something I wish I had done much earlier. For several years, Ryna had encouraged me to take a sabbatical so we could spend more time doing things we enjoyed, especially travel. And, I always resisted. I feared that even though I was well-respected in my job and a valued member of the team, I was the oldest guy there and I was afraid that once I left my value would diminish and my job would eventually disappear. It wasn’t easy to now have to hand over all my projects. But, I realized I had far more important matters at hand.
Once in hospice care, Ryna remained ever-practical and made a list of all the things she wanted me to take care of before and after she died. These things were all hard for me to process, at the time. And, I have to tell you, it felt surreal -- for example -- to be calling Pumphrey’s funeral home to make advance arrangements for her cremation. And, to imagine spreading her ashes in the ocean, as she requested. Her check list was thorough and well thought out. And, although at this point she was only able to type with one finger on her iPad, she managed to write separate letters to me and each of our girls for us to read after she died.
Ryna reluctantly agreed to let us hold a memorial service. She needed some convincing because she was modest and couldn’t imagine many people wanting to attend. But she eventually gave in and then determined the type of service it should be --- definitely non-religious. Although we were both raised Jewish, we were not very observant. And, of late, Ryna had become attracted to the principles of secular humanism. We found a secular humanist officiant, named Tony Hileman, to lead the service and help us plan it. Tony -- a wonderful, compassionate man -- came to meet with us to make sure Ryna was comfortable with him (which she was) and to learn about Ryna and her life. Ryna asked that we find an outdoor setting for her service. At Tony’s recommendation, we took Ryna to see the beautiful Woodend Sanctuary in Chevy Chase, run by the Audubon Society, where we had never been. Ryna, a long-time nature and bird-lover, thought it was perfect with its covered outdoor patio overlooking their expansive grounds. I agreed but, for me, this was yet another surreal experience.
During her time in hospice care, Ryna remained in contact with friends and relatives by phone and email, eventually letting everyone know she was nearing the end. But, she was very proud and very embarrassed about her condition and except for our daughters and me, she refused any visitors. That was not an easy conversation to have with her 85-year-old mom who wanted to immediately come down from NJ, when she heard the news. But, she knew she’d have to respect her daughter’s wishes.
After about a month of hospice care, there was a pivotal event. By this time, Ryna was already having difficulty speaking and swallowing, and was beginning to have breathing issues. In the middle of one night, the breathing problems worsened and a call to the nurses had me administering morphine. She settled down but in the morning she was largely non-responsive. An emergency call got the nurses to the house very quickly. It became clear that the kind of care Ryna now needed reached a whole new level, probably beyond my capabilities, as hard as that was for me to admit. Fortunately, Ryna became responsive long enough to indicate she wanted to be transferred to the Casey House, where she’d get round-the-clock professional care. Although this was not her initial preference, she somehow had the presence of mind to know this was for the best.
The Casey House is an absolutely amazing place and the people there are fantastic. But, in spite of that, I found the five days Ryna spent there to be excruciating. It was hard for me to look at her … not being able to tell if she even knew we were there. And, I was certain she didn’t want to end up this way. Ryna wanted her death to be quick. Had physician assisted suicide been legal in Maryland, she would have opted for it. She was a supporter of the Compassion & Choices organization and truly believed in their mission. While, what I had really hoped for was a miraculous recovery, the last thing I wanted now was to see her linger… for what seemed like endless days. But, the end finally came in the early morning of August 7th, 2015.
Thank goodness for my daughters who helped me through the days ahead. I finalized the cremation arrangements and struggled through a visit to the funeral home for what they call “identifying the body”. We’ve all seen this in movies, of course … but, this was one step in the process that had not occurred to me. And, it was by far the most troubling thing I’ve ever had to do.
And, there were so many other things to do:
We picked the date for the service, booked the venue and officiant, wrote the death announcement, created the invitation list, invited the speakers, picked out photos and songs for the service, asked a friend to record it and create a website link for those who could not attend, arranged food for the luncheon, figured out accommodations for out of town guests, and so on, and so on. Fortunately, my producer brain had kicked in and I was pretty much on auto-pilot. And, my daughters did a lot of the work.
People began visiting and bringing and sending food. I saw many of Ryna’s former coworkers, some who I was meeting for the first time. Everyone was wonderful and supportive.
The service was perfect and it was well attended, as was the luncheon. It was great to see friends and family who I don’t often see. Some stayed for a few days afterwards. But, throughout all of this, I knew the hardest time was yet to come…after everyone had gone home.
It took a few days before I got up the courage to read Ryna’s letter. It was hard to read but it was beautiful & meaningful, both reflective and forward-thinking. And, of course, it contained some specific instructions for me on how to go about living my life without her. It was very generous.
I could not have predicted what it would feel like after Ryna was gone and it is not easy to describe. But, I can tell you that I felt lost. I felt angry that this could have happen