The best year...
In a simple, yet beautiful ceremony on January 12, 2002, my ex-husband, Danny, and I were remarried. We had been divorced for about eight years, and some things had changed in our lives to bring us back together. Our nine year old daughter, Erin, was very happy about this – her father and I had been on friendly terms while we were apart, but she had been too young to remember us being together. We were all excited about being a family once again!
When the ceremony was over, the three of us held hands as we walked back down the aisle to exit the church. My younger sister, Joyce, was sitting on the end of the row and we couldn’t resist giving each other a hearty high-five as we walked by. Little did I know she was keeping a secret from us.....
...and the worst...
Later that week Joyce called to tell me her news. She had received the results of a routine scan that showed some cancerous tumors in her liver. They weren’t big, but they were there. When her oncologist had removed a tumor from her colon the previous year, they had found cancer in ten of the twelve lymph nodes that were also removed from the area. We had all been hopeful that treatments would eliminate it before it could travel any farther, and that she would reach the "five year" milestone.
Joyce was optimistic as she explained that she was going to start treatments again. She seemed pretty upbeat and positive – so I felt the same way. I was sure that my sister would be among the thousands of cancer survivors. She had always been the healthy one, the athlete of the family. She ate right and stayed active her entire life, exercising regularly at home during colder months, and playing softball on two or three different teams during spring and summer months. So why did I feel a tug of fear?
She seemed to tolerate treatments well as she participated in different clinical trials, worked full time, and played softball through that season. We had some family cookouts and spent time together. As summer and softball season waned, she didn’t always feel real energetic, and some of the drugs made her feel nauseous. But she never lost her hair, seemed not to lose any weight, and generally looked her healthy self, so I was still optimistic that this would all pass and we would breathe a sigh of relief. But the fear was still lurking.
Our brother, Randy, had moved back to Ohio in the late spring after living and working out of state for many years. He moved in with Joyce and her "significant other," John, which was a good opportunity for them to make up for lost time. Randy drove her to many of her treatments and stayed with her there. Because Randy was always available, I never did take her. I was "comfortable" with the excuse that they needed the time together to catch up with each other.
Denial can be a good thing at times, but not when you are losing precious time to spend with someone you may be losing. I wish I had spent more time with her – shopping or having lunch or just talking – maybe even asking the tough questions that were on my mind. But I also keep telling myself that maybe she didn’t want to think about these questions. Or was it that I didn’t want to know the answers?
She and I actually didn’t talk about it much at all – I would ask her now and then how she was feeling, and she reply that she was tired, or felt sick, but nothing too negative or horrible. I wish now that I had stepped out of my comfort zone and taken her to some of her treatments. It would have given me more insight into what was truly going on. I wish I had stepped around my own fears and asked her about hers. I wish I had risked learning more than I really wanted to know.
On Friday, September 27, we received the worst news yet. Another scan showed the cancer in her liver had actually grown, and it had also spread to her lungs. Her doctor said she was welcome to go elsewhere and try some radical treatments if she wanted, but he sadly said there was nothing more he could do for her, and with a broken heart, was declaring her as terminal. He had contacted hospice, and they called her to schedule a visit at home.
The words hit like a shock wave. I was not prepared – I did not anticipate this. Why had I not paid more attention to her physical decline, how tired she had been, how sick she had felt, how much time she seemed to be taking off work to stay home and rest after treatments?
Joyce’s friends and co-workers were also devastated by the news. Her friends rallied around her and carried on some semblance of social activity. We all did the best we could, and somehow moved forward into the depths of sorrow that lay before us. There were good days among the bad. John and Joyce had not married, but decided at this time it would "make things easier." They put together a simple ceremony to take place in their home. Just family was there on October 8 as Joyce and John said their wedding vows while the sun was setting over the balcony out back. As I write this I just now realized how symbolic that was. Randy and Erin had lit some small candles we had all collected and put randomly around the rocks on the hillside. It was a beautiful ceremony – so bittersweet. It was right and yet so wrong – it was an anniversary that would never be celebrated.
Our family has been known to have a quirky sense of humor at times. We started a corny tradition years ago of making a fun "craft" on Thanksgiving Day. Even the men grudgingly agreed to participate, and we all end up having fun with it. It was a chance to regress and be a little silly. This year, I volunteered to be in charge of the craft, as I had always wanted to make gingerbread houses. I made and pre-assembled the pieces into four houses. Each household could then have more time for the fun part – decorating!
Joyce was not feeling well, not surprisingly, but even she sat at the table and was watching us decorate. Our Aunt Yvonne handed her a knife and told her to "frost something" because she wanted Joyce to be part of the action. Joyce did, and even seemed to enjoy it for a while, and we enjoyed seeing her smile and having some semblance of fun. She was not a participant in much of anything at this point in time, and we all benefitted greatly from the genuine fun and laughter we shared building our silly creations that day. Joyce told Randy later that night that it was "a good day," so I was glad that I had preserved our tradition that year.
Visit with longtime friends...
Mom had notified many family friends about Joyce, and of course, some wanted to come and visit as a subtle way of saying their farewell. One particular family was former neighbors and Randy, Joyce, and I had each babysat for their two children when they were young. We spent a nice evening at Joyce and John’s home, talking and laughing about some of our wonderful memories as children.
Randy told me later that he had quietly observed Joyce at times during the evening. He said the look on her face many times might have paralleled such thoughts as, "....this is the last time I will ever see these people...." I think I tried very hard never to read her thoughts – I’m not sure I could have maintained my composure in her presence had I done that. Would it have been so wrong to lose it? As I think back, I wish I had asked her now and then what she was thinking about. She seemed on so many occasions to be happy, but there had to be an underlying current of thoughts and emotions at times. I think I was afraid of this current – like a strong undertow that could pull me under if I got too close and I would drown in my own unfathomable sea of sadness and anger and fear. So I kept a safe distance....
On December 3, Joyce started taking morphine as something stronger needed to quiet a persistent cough. Morphine relaxed everything in Joyce’s system and greatly reduced the cough. Morphine also represented another major step in Joyce’s journey – it would help keep her comfortable and pain free....and keep reality from being quite so real.
I hoped that the morphine might help take Joyce somewhere else mentally and emotionally so she wouldn’t have to deal with the inevitable. Or was it so I wouldn’t have to deal with her potential struggle with the inevitable?
At this time, Joyce told her hospice nurse that keeping track of her many medications was getting too confusing for her, so John, Mom, and Randy were assigned to be responsible for this task. John called Mom to help with other things at home as well. I was not contacted as much – I think people thought I was "too busy." I wish I had spoken up and let them know I wanted to be there to help out more. I wish I had just been there.
Joyce’s hospital bed arrived at home. Once she was settled into her final resting place, she found immediate comfort. She later told me that if she had known how comfortable it was and how easily she could move herself around some by using the buttons, she would have asked that it be brought sooner. But who knew? I wish I had known, and to this day when a friend or acquaintance tells of a relative who is resistant to getting a hospital bed at home, I tell them about Joyce’s experience and her very words. If someone else can find some relief sooner, it can only help. Hospital beds at home seem to represent being closer to the end, so it is often hard for people to accept these comfort measures.
A note was put on the front door politely stating that Joyce desired no more visitors. Only family was "allowed" after this point on. She said she felt like a freak and just plain felt so awful. She wanted no conversation and nothing to listen to, not even music. She was well aware of her appearance and limitations, and her dignity had been completely taken away.
One of Joyce’s dearest friends, Bo, who was also a former teacher and coach and always a mentor, said she came by and read the note – which was a polite way of saying "leave." She emailed me to ask if we needed anything, and wanted to know if Joyce was awake at all any more and if she was in pain. I told Bo that Joyce still ate a little at mealtimes and got up now and then with help to use the restroom. But I assured her that Joyce slept or rested quietly most of the time, and seemed to be experiencing little or no pain. I said there was no "visiting" with her because talking started up the cough. Joyce had also told me not long before that she just didn't have a whole lot to say. We didn't talk to her because Joyce just wanted it quiet. Noise and conversations disturbed her, so I was not able to tell her so many things I wanted to say, like I would miss her more than words could ever express, or how sad I was that she would not be around to see her beloved niece grow up. I wish I had written these things down - they may not have burdened my mind so much.
I told Bo that I had some questions of my own that may never be answered. I sometimes wondered what she was thinking about, or if she was thinking about anything at all. Was she afraid? Did she pray?
Bo had some of the answers from previous conversations she had had with Joyce. Bo said that Joyce had said she was not afraid, and in late November had even wondered why she was still here. This gave me reassurance, but I also felt guilty. Why had I been afraid to ask her these questions? The least she would have done is to tell me that she didn’t want to talk about it. She knew I loved her, but I should have voiced that in an invitation to talk about things that may have been bothering her.
On Friday morning I went to Joyce and John’s to be with Joyce – it was my day to spend with her alone as her caregiver. When I arrived, Mom and Dad, our Aunt Yvonne, Randy, and John were all there. John explained to me that around 3:30 that morning, Joyce had woken him up and said, "Something has changed." She apparently sensed that the end was now very near. So our family vigil began.
Joyce was in and out of awareness, sometimes dreaming and seeming to talk in her "sleep." She was at times having a conversation with an imaginary person, or having an imaginary conversation with one of us, complete with facial expressions and hand gestures. It was actually amusing, so we were able to experience a little humor throughout the day. Several times she opened her eyes and just said "okay," waved her hand in an agreeable gesture, and then closed her eyes again. Was it the morphine, or was she experiencing reassurance from someone in the "great beyond"?
A friend who was a hospice nurse in the past suggested that the conversations Joyce seemed to be having were most likely with someone we could not sense. She said that frequently people at the end of life report being visited by spiritual presences and loved ones who have gone before them. I found this to be reassuring in that it meant that Joyce would not be alone when she left us. I wish I had asked Joyce who she was talking to.
That afternoon, Mom and Dad picked Erin up from school for me and brought her back to Joyce and John's. Erin had said she wanted to see Joyce one more time. When she walked into the house and into Joyce’s view, Joyce broke into a huge smile, and said coherently and sincerely to Erin, "Hi! How are you?" That’s the first I’d seen such a smile on Joyce’s beautiful, unwell face in many days. It was also the last I would see that smile. It is forever imbedded in my mind and in my heart.
When we returned to Joyce and John’s on Saturday morning, Joyce was still with us. She was barely able to acknowledge us, and was breathing loudly – a wheezing, almost wailing sound at times. It was an eerie sound – another sign of her approaching departure. She was still able to drink her lunchtime dose of morphine – straight – as she had been doing.
Joyce knew she was surrounded by love – we reminded her many times throughout Friday and Saturday that we loved her and wanted her to be at peace. Some time in the early afternoon, she said to us, "They’re all waiting for me." We encouraged her to let go and go to "them." I wanted to know who "they" were....I wish I had asked her who was waiting – was it our grandparents, or friends of ours who had gone before?
Later in the afternoon we suddenly heard the "death rattle." We quietly gathered around Joyce and told her we loved her and encouraged her to go. Some held her hands. At 4:05 p.m. Joyce took her last breath and was gone. I and the others were truly privileged to be there to witness as she was accepted into God's eternal loving care. It was by far the most powerful, humbling, and unforgettable experience of my life.
It has been several years since losing Joyce, and as I look back I can truly say that it has helped guide me to where I am today. This experience of witnessing her decline and the end of her life, then my journey through grief alongside my family has helped me grow in several ways.
It was my first experience with a serious illness, and I am still amazed at how much Joyce was able to do and how normally she seemed to function just a few months before she died. Had I paid more attention, however, I may have noticed her decline through the summer – how tired she was after playing softball, or after each treatment, or how uncomfortable she was starting to feel. Denial, maybe hand in hand with faith, can keep the human spirit strong for as long as necessary before having to accept reality. Joyce’s doctor was surprised at how long she had lived. Perhaps her healthy lifestyle also helped some by enabling her to play one more summer of softball and witness one more season of The Ohio State Buckeyes – undefeated no less! – two of the things she loved most in life.
My family’s cohesiveness supported us during Joyce’s illness. We didn’t always see eye to eye with each other, but we have always been a close and loving family. My brother had said that if something wasn’t important to Joyce, then it wasn’t important. We all saw the wisdom of this and it became our guide. We focused on activities and topics and goals that were important to her.
We were not afraid to cry or show our emotions, but we were also not afraid to laugh. Memories can do so much to sustain people in times of loss and sadness, and the humor our family has shared through the years is such a strong part of our memories. Laughter is good, laughter is healthy. Joyce would appreciate us sharing the fun and laughter with each other as a tribute to her.
My attitude toward death has been altered in a favorable way. I do not wish it on anybody to lose a loved one, but it has happened or will happen to all of us – death is part of life, it is the end of life. I am glad that I included our daughter in the experience of losing Joyce. Erin was ten when she witnessed Joyce’s last breath, and her experience has benefitted her in the long run. She understands, too, that death is part of life – for everybody. Unfortunately, some die too soon, but it does happen to all of us. Not long after Joyce died, Erin made it clear to us that she wanted to be an organ donor if anything ever happens to her. She and some of her friends have already had serious discussions about personal preferences for their funerals or memorial services – songs they want played, memorabilia they want displayed, even bright colors of clothing attendees will be required to wear!
I discovered a thirst for knowledge about grief and loss, death and dying. As an adult learner in college I immersed myself in two amazing quarters of learning much about cultural, socioeconomic, religious, spiritual, historical, moral, gender specific, generational, and relational aspects of death – and I only scratched the surface. My desire to help others through their journeys of grief has prompted me to become involved in some rewarding volunteer activities that enable me to employ my empathy and understanding of the uniqueness of loss to death.
I hope my story helps others in a similar situation. If nothing else, to just be more aware of their choices and not afraid to "just ask" or just "be there" with a loved one who is seriously ill or dying. My greatest wish is that I had spent more time with my sister and at least asked a question or two that may have invited her to share her feelings, her fears, and maybe her own questions. I don’t beat myself up over these regrets, but I wish I had known then what I know now.