I started this piece very shortly after Mom passed away. It was hard too write and even harder to revisit to actually finish it up. I can't say I have reread the whole piece, but I think it's ok, and I want to share it with some people who have been important to me and my mother. I have also posted a brief slide show, which you are welcome to view on BarrettPhoto.us. Following is what I wrote late last year...
Barbara Ann Barrett — Born April 13, 1933, quietly passed away in her sleep from cancer on August 19, 2016, at about 7:05am. That is how I began her obituary posted on Adams-Green website. Quietly passed away in her sleep sounds like an euphemism, a wishful memory of what might have been, but in my mother’s case, it is remarkably accurate, though brief description of the event. I want to expand on that, provide a few more details from my memory for my memory, so that I can clearly, accurately, recall the related events that preceded it.
Mom’s battle with rectal cancer began in the fall of 2013 at the same time I had a life threatening health crisis. My intrepid wife had us both in the hospital, different hospitals, shuttling between to oversee our care. Mom’s doctors, unsurprisingly suggested a witches brew of chemo, radiology and surgical treatments, steps that might stop the disease but with a high cost in side effects and life altering changes.
This was Mom’s second cancer. Her first was bladder cancer more than ten years ago. She beat that cancer under the care of Doctor Simon Chung. He gave her an Indiana Pouch. Allowing her to avoid an external pouch, giving her good control of her body. The procedure defeated the cancer, no chemo, no radiation needed. Unfortunately, recovery from this major surgery was very difficult. Mom spent the better part of four months in the hospital dealing with a variety of complications. On discharge, she was totally bed bound, very weak, desperately needing to build strength to do anything. She struggled through rounds of rehab, eventually learning to tenuously walk with aids and support. She was getting around with the aid of a walker, still living on her own, when the second, unrelated, cancer was diagnosed.
Mom having been through a major cancer surgery and not wanting to go through another titanic battle, one that would leave her with an ostomy pouch, decided she did not want the surgery. She would have chemo and radiation and live out the rest of her life as her best version of herself. I don’t recall much of her early treatment, I was still seriously ill and in and out of the hospital fighting my own fight. Have I recently mentioned my dear wife, Linda, who had to support both of us during this time, facing the possibility she might lose us both? From what Linda has told me, Mom’s radiation treatments made her terribly sick and had to be stopped not long after they had started. Mom’s oncologist, Doctor Ravneet Grewal, crafted a chemotherapy regime that largely held the tumor at bay, actually reducing its size, though at a fairly high cost in terms of Mom’s comfort with her being subject to bouts of diarrhea lasting for several days each week.
In early 2014 my health started to improve, having had an adequate does of tincture of time as prescribed by my medical team as the best answer to my health problems, Linda and I struggled with how we could help my Mother. We clearly foresaw that she was not going to be able to continue living on her own, she would have to have more help. Our first step was to call Dan Dalrymple, a family friend, the man who had very quickly used the resources of FoxCraft to install railings and other aids in our house when I came home from the hospital restricted to a wheel chair, challenged to raise an arm let alone climb our stairs (fortunately, my son was able to get me up and down those stairs, I still don’t know how). Dan called in resources from FoxCraft and we considered what we might be able to do to adapt our house in Herndon to accommodate my mother living with us. Sadly, nothing made sense, moving Mom in would be hard and the resulting changes to the house undesirable in the long term and really not effective.
What about moving? That could do the trick. In stepped Betsy Madden, another family friend, now a Real Estate Agent, who offered her help. We could sell our house, Mom’s house, and buy another that could accommodate all of us. The new house might offer a quieter environment, a bit more bucolic, (go ahead, look that up, I did!) and be something appropriate for Mom’s last days. This would be so much work, especially with me needing a wheel chair, walker, or strong arms to even get around. Betsy assured us it could be done, tackling things one by one, step by step. She brought in simply wonderful resources to help us. Betsy called on Sherri Salamone, Right Angle Interiors, a fantastic interior designer to build the pre-sales punch lists for both houses and make the myriad choices required. Betsy brought in Debbie Clark to help us “declutter” and organize, so we could move with less trauma; Debbie was able to teach us how to let go of hundreds of things that were just taking up space and making moving seem impossible. Of course, FoxCraft provided the brains and brawn required to get both houses ready for sale.
Betsy went searching for a house that could accommodate everyone and some of our wish list items. She found a proverbial gem in the raw on Firestone Place in the River Creek community just outside Leesburg VA. The home was built next to a mirror image, same model, that had an elevator. It had a wonderful waterfall pond/stream with a covered porch that offered a very nice view of trees and Goose Creek. The new place had space on the lower level that could accommodate an in-law suite and enough space to do everything we dreamed of. We called in Dan and Sherri, they liked the place, thinking it could work for us, despite its, at the time horrendous appearance and poor condition.
Mom was generally holding her own during the summer and fall of 2014, but we could tell it was only a matter of time before she could not safely be on her own. On one of our visits, we found her passed out and unresponsive in her chair, she hadn’t eaten and was suffering from hypoglycemia, adding more urgency to moving her in with us.
Our ‘new’ Firestone house had to have her suite pounded out, something that could accommodate her, a wheel chair, handicapped access to a bath room and a means to move between the main and lower levels. Fortunately, FoxCraft stepped up, yet again, this time principally in the person of Rick Cheney, who, with the help of other FoxCraft folks, pounded out the first stage of the remodeling quickly, building her suite and a home theater, allowing us to move Mom in with us in Leesburg. A stair lift from Area Access didn’t hurt either.
Mom was with us for all of 2015, living a more-or-less normal life, as our house was pounded into its desired configuration, most significantly with a new kitchen and elevator providing her access to all levels, including the garage so she could travel outside without steps. The new kitchen prominently included a bakers height island designed to accommodate a wheel chair and allow Mom to be literally in the middle of the kitchen without being in the way (something that was always a key concern with Mom — not being in the way). All of this work was spearheaded by David Cribbs, another superstar from FoxCraft.
As 2016 approached, the side effects of chemo were catching up to my Mom. Her bouts of illness after each treatment were getting more intense and lasting longer. At times stretching from one treatment to the next, with no time in between to actually live. We tried a different oncologist who offered a plan that might work, but proved to be even worse, putting Mom in the hospital again, from side-effects. During this visit a few especially empathic nurses suggested investigating hospice services.
At this point, we knew for a fact certain that Mom was going to die from this cancer and that treatments were extending her life but at a tremendous cost in suffering. Hospice’s focus on quality of life, palliative care and support seemed exactly what was needed. Together with my Mom we decided that she would enter home hospice care as provided by Capital Caring. Mom did not want to be in a hospital kept alive by machines, tied to tubes, she wanted to be at home, with family, giving and receiving love as she had all her life.
After we made this decision, Capital Caring quickly swept in with support and assistance. Our case manager, Tracy Peart, a dear, sweet person, helped us stop the medications that Mom was on, that were not helping, she made sure we had those mediations that would help, teaching us about Morphine, Haloperidol, Lorazepam, and Zofran, what they do and how even their side-effects could be used to treat symptoms in hospice.
Mom improved for a few months after the chemo stopped. She became strong enough to go on short walks, traveling past our neighbor’s house a few times and able to sit on our porch and listen to the sound of falling water while looking at the flowing creek and trees swaying in the breeze. That period passed like an all too brief Indian Summer right in the middle of our actual Winter.
Her final health decline began as the leaves popped and the flowers blossomed. As her strength waned, she spent more and more time in bed, with occasional trips in her wheel chair to sit on the ramp that Rick built gazing out our under-deck windows at the waterfall, gold fish pond and scattered flowers blooming from the lily pads. The “basement dungeon,” her words, always spoken with a gleam in her eye and a smile on her lips, we had built was decorated with memories of a wondrous life but filled with love.
As the weather warmed and the calendar turned to August she became totally bed bound, requiring much more care and placing more strain on us. Tracy suggested adding additional support, which we did though Visiting Angels home-care, never have I encountered a more appropriately named organization. Visiting Angels sent us Crystalbell, a young lady who helped us with the harder aspects of caring for a person confined to their bed. Like so many people who were involved in Mom’s care, Crystalbell was a godsend.
Those first weeks in August were hard. Mom was slipping away. She couldn’t eat, could barely drink, was having a hard time remembering where she was, and was often in pain. We knew she was near her end. So did our kids, Brian and Shannon, who both came home, with the support of their respective managers/companies, so they could be there for their Grandma, mother, and me. Mom held on longer than anyone expected. She had visits from our pastors (Stephen Smith-Cobbs, Becca Messman), her sister (Mary), and quite a few others.
She hung on for days, mostly sleeping, occasionally asking for some Coke to drink, and talking a bit. One of her last evenings, she was more alert than usual and reviewed the story of how she met my Father, her first jobs, visits with the Werners, and looked at some photos. It was a wonderful evening, though it was long and I was tired. No one was sleeping very much. Brian, Shannon, and I seemed to set up an informal rotation, including Crystalbell, so Mom would be alone as little as possible.
Tracy, Becca and others counseled us about Mom’s impending death. I have always felt bad that my Father had died alone, in a hospital, after I went home from a visit. They each told me that people often hold on, while visitors are present, choosing to pass in private. Mom knew I have been tormented by my Dad’s passing, though she didn’t understand as well as my councilors did from their experiences. She wanted me to forgive myself, and I suppose I have.
Late in the evening of August 18th, Mom began to gurgle as she breathed, something that is sometimes called the death rattle. It is caused by secretions in the throat that can no longer be swallowed. The sound is terrible for loved ones and care givers, but Mom was beyond being bothered, unaware of the noise. Brian, Shannon and I had been up late with her, not wanting to leave, until Shannon told us all to go to bed as the rattle stage could last for days and we were all exhausted.
On the morning of August 19th, I rose about 6AM and made my first trip of the day down to Mom’s room to check on her. Really to see if she was still breathing. I suppose I was relieved to hear her breathing, but terribly sad to hear the gurgle again. She was unconscious, beyond suffering, but no longer really living. I sat at her bed side, holding her chilled hand talking to her about much and nothing for about half an hour, until I decided I had best go have breakfast and get up for the day. Shortly after I came upstairs, I heard Brian heading down to see her. He was down for only a few minutes when I heard him come back upstairs and call to me to come down to help him.
Mom had turned her head and spit up a bit on her blouse. We cleaned that up and sat down on both sides of her, holding her hands. Her breathing was slow but had cleared remarkably, which made me happy. As we sat there, her breathing became much slower. Time passed. A breath. More time passed. Another breath. After what seemed a long time, I checked for a pulse and found it. Brian reminded me a pulse could continue for a while without breath. We both held our breath and Mom’s hand as we watched over her. I checked her pulse one more time, felt nothing, a surge, then nothing. Brian called Shannon who told her Mom, called her Uncle Roy and joined us. I called the hospice, they sent Nurse Tracy. Linda joined us in Mom’s room. Roy and his family came. Eventually Mom’s body was taken away. Her spirit had gone to join her beloved Chuck. She had carried on for more than twelve difficult years without him. We love you mom, Gma, SillyGranma, Barbara, Barbie, Barb...