A Personal Experience
by Rita Cooper Cromwell Cobbs
Three weeks after my husband’s death in hospice, I can reflect on the experience of providing home care for him for the past six months with the help of the Life Path Hospice team, friends, family, neighbors and several Tampa Bay Time Bank members. All in all, my two years as a member of the Tampa Bay Time Bank helped provide a key network of support for this intense journey.
Much of that support was unsolicited and poured out from the members’ compassionate interest in our welfare. Even though such support had not been requested formally on time bank software, much service was provided informally, volunteered or just appeared as surprise presents. In retrospect, I have tried to provide some accountability by recording time bank hours to a few of the key people who helped us through this journey. But during the six month long hospice experience itself, it was not possible for me to have enough detachment, time, or energy to do the appropriate reporting of exchanges, nor was it expected by members. In fact, I moved from a fairly active participation in time bank activities to completely shutting off any computer connection with it, not even reading the newsletters.
My focus was one-pointed and brooked of no distractions by necessity. Also clear was that people who were friends in the time bank did not offer their support and help as a time bank exchange, but simply to assist someone they cared about in a time of crisis. The services provided, the meals brought, the patient companionship as caregiver relief were given as a gift of love, a manifestation of friendship, not as a potential exchange of value. For me, this created a strange gray area of communication, where to discuss something like giving credit in hours (not money certainly, but related to a value exchange) would have been tantamount to an error of etiquette, and would have reflected poorly on the friendship and feelings of affection motivating the service provided. In summary, it was not the mechanism of our formal exchange of hourly services in the time bank structure which was my big support at this time of need, but rather the intensity of the friendships generated through contacts within the time bank that provided a network of caring individuals who offered themselves and their talents as great gifts.
I did not undertake looking after my 89 year old husband through his lung cancer illness with only the support of hospice naïvely, but rather based that decision on my years of being a hospice administrator, and knowing in a thorough and basic way the gamut of the hospice process and its outcomes. In fact, I could visualize the final hours of my husband’s death at home from the first day that we received the hospice referral. And that both made the process easier and more functional and at the same time harder and more poignant. My commitment to caring for him at home was 100% and the only question was would I be able at my age of 73 to do what was needed as sole caregiver, our seven children being scattered throughout the United States. A few simple responses from the hospice team convinced me that their care was excellent and the structure was established to provide me with all of the basic care giving needs.
My husband had countless years of successes in a wide variety of fields and was best known for his storytelling ability and his infinite capacity to engage other people in interesting dialogue. We soon had emotional ties with the nurses, the CNAs, the social worker, the volunteers and other members of the hospice team. Quickly, my daily experiences were altered by my husband’s changing physical condition. It required concentration to stay on top of medical and emotional needs and to continue to provide enjoyable, productive and creative life experiences for him. He continued to write his newspaper column for the Virginia mountain newspapers each week, to communicate with family and friends and to read his usual book a day on an e-reader.
The one certainty we had was competent professional help from the hospice staff, so when volunteer hours were needed, I went first to the Hospice structure which mandated highly trained volunteers as part of their interdisciplinary team. We had two excellent volunteers, one who came every Wednesday after work and talked with him while I took a much needed break, and another who developed a Legacy program which involved videotaping his stories and resulted in some 10 hours of irreplaceable family history and anecdotes as well as a slide show commemorating his life and family.
Later, as time bank members begin to offer help and my routine was more established, I was able to incorporate their kindnesses as additional help to our day by day activities. One of the first supports from members of the time bank was bringing food. My stress level was high enough so it was hard for me to make decisions about food. My husband’s appetite was minimal and soon his intake was primarily supplementary drinks, but one Tampa Bay Time Bank member brought watermelon and other such delights and for his birthday a gigantic birthday cookie which was fun and made a great photograph. Another member offered overnight accommodations for visiting relatives. Sometimes someone would bring me a special little meal delivered as a surprise, often some delectable foreign dish, or a dessert or special cheeses or a sandwich. Since his intake was limited, it was usual for me to eat randomly, and such food gifts were always a great pleasure.
Often a time bank friend would ask if I needed something from the grocery store and if I mentioned one item, they would appear with a basket of goodies. One special member emailed a long list of things that she would like to do for us; the itemized list gave me previously unidentified possibilities. It also made me realize that she wanted to help and was not making a token overture. She came to our house and listened to me talk for over an hour, adding supportive comments and gentle guidance. Her professional skill as a counselor was just part of her personal identity and “friend to friend” she was able to provide professional support, a bonding that carried over through followup emails.
Some members were long-standing friends; when one of our dogs needed surgery, she took over the whole process, taking the dog to the vet, handling aftercare, and monitoring recovery. None of this would have been something I could have handled on my own while looking after my husband.
Another member developed a relationship with my husband almost like a granddaughter. She checked weekly to see what we needed, brought supplies, treats, fixed home repair problems, and created a bed for him outside in the backyard to give him a chance to be in the sunshine.
Perhaps the most extraordinary development was during the last three weeks of my husband’s life. Two members of the time bank who operate a community acupuncture clinic in the area came by repeatedly to help in many ways. One, an expert in computer technology, got my printer working, also fixing some computer problems, and signing me up for her Netflix program, enabling me to watch some interesting movies. The computer and printer concerns were important as we continued to work with my husband’s writings and needed to print out copies for his review as well as photos of daughters and sons. Both of these TBT members were good visitors, full of fun, hugs, and emotional support, bringing food delicacies which we shared together. They also made visits at bedside with my husband to listen to his stories and share their own lives.
As the time of death drew near, their spiritual support came into play. One member brought invaluable spiritual books, one book a dialogue with a Rabbi and another written by hospice nurses, entitled Final Gifts, providing a way to meaningfully interpret the so-called confusion of patients in their final day. The other friend who had medical training was able to help position my husband in his hospital bed and make him more comfortable. All in all, their visits were a major contribution to our comfort and tranquility.
Another fairly new and inactive time bank member, both a friend and neighbor, came regularly. He took a couple of our dysfunctional hearing aids to the VA repair service and brought them back in working condition, helping us when hearing problems were compounding all our other concerns. He also spent hours at bedside in meaningful conversations with my husband. A visit from Mark was something my husband welcomed even during his last week of life.
There are several conclusions that I have drawn from this recent life altering experience:
1. Attention to the mechanism and technology of a time bank (its exchanges) is beyond the capacity of a caregiver and patient during a time of crisis. It is largely impossible to initiate and complete requests and recording of hours for services rendered unless a caregiver shifts that needed one-pointed focus away from the medical task at hand. Nevertheless, the basic building of community which is the foundation and function of the time bank exists in and apart from the formal exchange mechanism and THAT is the greatest benefit derived from the time bank. That community of friends who really care about the patient and caregiver come forward with love and service as a voluntary outpouring of affection.
2. For one committed to the principle of time banking, it is easy after-the-fact to begin some kind of equitable adjustment of “time-bank hours” for services rendered that satisfies the function of hourly exchanges and at the same time cements the personal relationships of the people involved.
3. There is probably a role for facilitators within the time bank structure to help this process go forward and also perhaps to create a gift category of hours that could be awarded in the name of a person giving the service. If it is awkward to award hours for service to a particular member, it might be more graceful to give hours in their name to a fund for those who need hours, much like a donation to a charity in honor of a special friend. If such a mechanism is created it is important that some member of the time bank acknowledge that gift of hours and the name of the person that is being recognized soon after the service is rendered so that it is not an unrecognized formality.
Finally, at this point, weeks after my husband’s death and one day after a Thank You Potluck for all those who helped us on our journey (a gathering attended by some 40 people, 8 of whom are members of the Tampa Bay Time Bank, and taking place in our front yard) I am reminded of my husband’s strategies in fund raising for Roanoke College in Virginia. His point when accompanying one of their development staff was never directly to ask for money. He believed that, if a call was completed with the proper emotional rapport and information, the financial gift would follow and would often be greater because it was never requested. In the same way it has seemed to me that there has been more goodwill created for and about the time bank through an oblique process, stemming from natural emotional attachments and affection than through any so-called pitch or direct solicitation of membership. Perhaps what we have learned is that, when we go about building community, the time bank structure takes its rightful place as a mechanism rather then as the primary function.