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 happened to her…and to us… and I was scared … really scared. My worst times were early mornings when I awoke with extreme anxiety, almost like I imagine panic attacks to be. Sometimes I felt like I was gasping for air. If I stayed in bed, I felt worse. Forcing myself to get moving -- take a shower, walk the dog, try to pretend things were normal -- helped reduce the anxiety somewhat. I usually felt a little better later in the day, but knew it would likely start all over again the next morning. And it did, for a long time. I couldn’t imagine going on like this. But, I promised Ryna I would take care of myself and I knew I needed to get some help.
I found a bereavement counselor and it was good just to talk. Honestly, she didn’t do or say much of anything but she was a good listener. I found that talking to anybody was helpful… about Ryna, our lives together and the difficulties we faced, and the challenges I was now suddenly facing alone. It just helps to get it all out.
I also had regular conversations, mostly by phone, with a social worker from Montgomery Hospice -- a grief counselor -- who had reached out to me. She was great to talk to and those chats were helpful. I considered attending one of the many support groups offered by Montgomery Hospice but I came across another one that was more suited to my particular needs through an organization called Hospice Caring in Gaithersburg. It was ideal since it was specifically targeted to people 50 and over who had lost a spouse. Although, it was initially scheduled for only 8 weekly sessions, the leaders promised to keep it going as long as we wanted. It only ended just last month, after nearly a year and a half. And, I still occasionally get together with the people from the group.
The other thing that I found very therapeutic was going back to work, once my leave ended. My colleagues, for the most part, were understanding and supportive. There were a few who I could tell were purposely avoiding me, clearly uncomfortable talking to somebody who had just lost a spouse. But, I understood. Honestly, I would have put myself in that category… before. It was especially nice to be back in the office, where I had spent so little time during the previous two years, and be around people I liked. And, it was helpful to dive back into my work and keep my mind occupied with things aside from my personal crisis. The hard part, at that time, was going back home.
And, then my life took an unexpected turn when, just a few months after I went back to work, I learned that my company would soon be moving out of state. Although I was among those who were offered relocation, I knew that moving to Knoxville, TN was not a viable option for me. I didn’t want to leave my family and everything that was left of my life in this area, even if it meant possibly becoming unemployed for the first time since college. I initially tried hard to find another job in the DC area. Not only had I always loved my work, but I couldn’t imagine not having a place to go and be around people…especially now. Even though I was nearing 65, retirement is something I never seriously considered. But, after a few months, I decided to suddenly suspend my search when my daughter was nearing the end of her second pregnancy. Her doctor had put her on bed-rest and she needed help with her then 2-year-old son.
That’s when I began spending most weekday mornings with my grandson, Camden, and my life became a whole lot better. Since that time, I’ve been taking him to all kinds of classes and activities – gym, art, music, whatever. Sometimes I have to get out there and dance and act silly with the toddlers and other adults. It’s usually young mothers, nannies … and me.
And, I have to say, it is a blast! Afterwards, I bring Cam back to my house for lunch and play time. I now have a basement full of toys. We’re always listening to music, singing, playing games, reading books. Camden and I have become great buds. I marvel at his curiosity, his intelligence, his amazing memory -- all of the abilities that I have seen develop so much over the last year. And, as a bonus, when I pick Cam up and drop him off, I get to spend time with my daughter, Erica, and my beautiful baby granddaughter, Emily, who is another wonder to behold.
And, I have to tell you that today I feel 100% better than I could have possibly imagined a year ago. I’m not sure if it can be attributed to any one thing or if its due to the combination of things I’ve been doing. I still miss Ryna terribly, every single day. But, I realize now that those who told me that, over time, I would eventually learn to cope and begin feel better, were right. At least in my case. I’ve also learned that people grieve differently.
In addition to the measures I’ve already mentioned, I also saw a Life Coach for several months. My hope was that she’d help me figure out what I really wanted to do at this point in my life given all the changes forced upon me. While I still haven’t quite figured that out, she did help me feel less uncomfortable with the uncertainty about the future. And, more recently, I took an American University course called Designing Your Life for Success. It was fantastic and something I’d recommend for anyone, at any stage of their life. I still have a lot of work to do to get myself to take action on some of the things I know I need to do to improve my situation, but I am making progress, little by little. I recently signed up for a course at Montgomery College called Find Your Strengths-Find Your Future. Maybe it’ll help.
But, I do know that I’ve learned a lot of things from this whole experience ... and here are some of them, in no particular order:
-I’ve learned that this country has a long way to go in regards to handicap accessibility. Finding places where you can get around with a wheelchair and with adequate bathroom facilities is extremely difficult, and requires a ridiculous amount of advance planning. Even places that claim to be handicap accessible often are not, at least not in a dignified way.
-I’ve learned that there are a lot more bureaucratic matters that have to be taken care of after a spouse dies than I ever realized. Places to call, forms to fill out. It seems never ending. Fortunately, there are some good check lists out there and people to help.
-I’ve learned that support groups are extremely valuable….sharing experiences with others in similar circumstances and, in my case, guided by leaders who had gone through similar experiences themselves. It’s simply amazing how much that can help. There were a whole lot of tears in the beginning. Smiles and laughs were in short supply. But, over time, the amount of laughter began to outweigh the number of tears, something that had once seemed impossible to expect.
-I’ve learned that it is beneficial to maintain a sense of humor during trying times. It is important to have some laughs.
-I’ve learned that it is healthy to cry, even though it is something I never used to want to do. I liken it to my attitude towards vomiting, when I feel sick. I’ll do anything to avoid it, even though I know I always feel better afterwards.
-I’ve learned that I don’t like being called a widower. I don’t like the term and resist using it. It’s an odd word, widow-er. It sounds to me like someone who makes widows.
-I’ve learned what it feels like to live without stress after 42 years in a high-pressure career, and for two of those years having that combined with being a full-time care-giver. It took several months before the adrenaline gradually drained out of my system and I eventually realized how different I felt. I can’t think of many upsides to this whole situation, but reduced stress, I guess, is one fringe benefit. And, it’s probably why I haven’t put much effort lately into finding new work.
-I’ve learned that it doesn’t hurt to think about your own mortality. This is something I never did before but I do now, all the time. It helps remind me to take care of myself -- as I promised Ryna I would do -- and to make sure I keep my affairs in order for the sake of my daughters and grandchildren, in case something were to suddenly happen to me.
-I know I’ve made some big mistakes and I have regrets. I wish I had taken some time away from my career earlier, when Ryna and I could have still done more things together. It turns out that being out of work is not nearly as bad as I had imagined … and the work I was doing no longer seems as important as I thought it was when I was in the thick of it.
-I’ve learned how vital it is to have a good relationship with my family and how lucky I am to have them. My daughters and I are in touch constantly. And, my relationship with Ryna’s family remains strong, and is very important to me.
-I’ve learned that it is possible to live alone. Of course, I knew that … but had never experienced it before. There are plenty of things I don’t like about it, but I am adjusting.
-I know how lucky I was to have a wife who was also my best friend and that our relationship lasted as long as it did, even if not as long as we would have wanted. It was by no means a perfect marriage but, despite the ups and downs, we remained faithful to the commitment we made so long ago … at an age that I now realize was way too young to really have had any idea what the hell we were doing.
-I know that Ryna is still with me, and still helps guide me in life. She’s in my heart, in my soul, in my habits (many of which she coaxed me into adopting) … and, she’s in my memories. Fortunately, the older and happier memories are gradually beginning to take precedence over the more recent and unpleasant ones.
-I know I’m lucky that Ryna was so clear headed and practical… and that, as bad as it was to deal with a long drawn out illness, at least we were given the opportunity to plan for the end, something many are unable to do.
-And, I believe that, in the ideal world, everyone would think about death – including their own -- as a normal part of life – and plan for it … and to be allowed to die in the manner they so choose…and with dignity.
DECEMBER 2018 ADDENDUM
Since giving that talk a year-and-a-half ago, my life has continued to improve and has become quite full. Camden is now 4 ½ and Emily is 2 ½ and I still spend a lot of quality time with both of them. And, I now have a third adorable grandchild, Jonah. He was born five months ago to my daughter, Alison, just weeks after she and her husband moved back to Maryland from Boston. I am incredibly fortunate to have both daughters and their families nearby and I treasure the time I get to spend with all of them. In addition, a year ago I found some very satisfying volunteer work that takes advantage of my television production skills and helps keep the creative juices flowing. All of that, combined with occasional Montgomery College classes and a bit of socializing, keeps me quite busy. I’ve also recently been approached about some freelance/consulting work in my field. While life would be a lot better if Ryna was here to share it with … and I still miss her every day … I think she would be pleased to know that I’m getting along as well as I am.