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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Relying on a Family of Strangers: A Patient's Perspective

by Jim Myers

My name is Jim Myers. I was diagnosed with Chronic Myelogenous Leukemia in the summer of 1995. My bone marrow transplant was in the fall of that same year. My wife Kelly and I have three children, oldest to youngest, Zachery, Jeremiah, and Elizabeth. We live in Cheboygan, Michigan.

With the diagnosis of cancer, there are many questions and concerns that arise. Once you have decided on a course of treatment, additional questions and concerns arise.

One of these questions for Kelly and me was that of caregiving after I was discharged from the hospital. We live approximately four hours from the hospital where my transplant was to occur. When I finally went home, Kelly was to be my caregiver. The problem was with the period of time between the hospital discharge and when I could go home. We considered all sorts of options, including relocating closer to the hospital, but Elizabeth was just starting kindergarten the same month as my transplant. Jeremiah was to have a tonsillectomy on the day of my transplant. The solution to our problem came from an unexpected source-a church.

We were helped in so many ways by our families, individuals, churches, schools, my employer, and the institutions that help those facing cancer, its treatment, and specifically bone marrow transplant. But one particular church and what they did for my family and me is one of the fondest memories of my treatment.

Our Family of Strangers
There were times that Kelly and other members of my family were able to be in Ann Arbor to stay in the apartment with me and take me to my appointments. But I was not permitted to be alone at any time and thus needed someone to be with me 24 hours a day. The Church of Christ in Ann Arbor, Michigan and its members were about to become family in a whole new way. This is how they did it.

We gave the church all of the dates and times that my family was to be with me. They created a schedule divided into three shifts during the day and a nine-hour shift at night. Then they posted that schedule and asked for people to fill in the times when they would sit with me and if necessary prepare my meals, take me to the emergency room, or to doctor appointments. Basically, they were my babysitters, for after all, I was in a sense given a rebirth. They were my providers and companions when my own family could not be present.

I met a very diverse group of individuals who came together to care for someone that they did not know and would not meet until that first time they came to take their shift. Each one of these people made sacrifices for my family and me and never asked a thing in return.

This group of volunteers saw my need and provided for it. With some, I enjoyed only conversation. With others, I enjoyed conversation and games, a stroll around the complex, or a ride in the countryside. We talked about jobs, families, politics, the past, the future, the Scriptures. Some I barely met at all; they would come in for the night shift just as I was going to bed exhausted; then they would be gone before I awoke, but they were there for me just the same.

These people were indeed, as someone said, a "family of strangers." I have lost contact with most of them, at least physically but not in my heart. There is one woman that we see and hear from often. We even met the family of some others, family that did not live in the area.

When I was well enough, it was my privilege and honor to preach during an evening service for the Church. It was also my privilege to be able to express to them my family's gratitude for their sacrifices and their care.

How about Community?
I believe that a "family of strangers" can be found very close to home. I have never given much thought to the word "community," but it seems to me that, in this context, the word is a combination of two other words: "Common" and "unity"- a group of people united by a common purpose, goal, or cause.

In addition to focusing on my medical treatment, we had real financial concerns while waiting for disability benefits. Some friends organized a sock-hop for our benefit. It drew people not only from our town, but as far away as 30 miles. That's community!

I know of a man in Wisconsin whose co-workers gave him enough of their own paid vacation to ensure him a continuous paycheck while he could not work. That's community!

May I suggest that if people are willing to promote a "family of strangers" campaign in their community, they could find volunteers to supply the caregiving needs of the bone marrow/stem cell transplant patient. One of the nice things about drawing from your own community is the fact that not all of your caregivers would be total strangers.

I believe that this can be very good for a community-a shared purpose in order to achieve a common goal. I believe that this is one way in which to develop a strong sense of trust and appreciation for one's community.

Caring for the Caregiver
It was not necessary that this "family of strangers" be the primary caregivers. Sometimes this family of strangers could be the relief for the primary caregiver. So often people focus all of their attention and energies on the patient and forget about the family. Kelly and the kids all went through the transplant and recovery. They are survivors too. There were times when Kelly really needed a break from the responsibilities of caregiving. She needed to be able to get out of the house and away from everything, just to keep her sanity. There were times when she just needed to rest.

Caring for the caregiver-this is a variation on caregiving that deserves more attention. Not all people who are willing to help can do so in the same way, but every effort should be made to accommodate their talents and their desire to help. For example, the bone marrow transplant patient is on a strict diet with many restrictions and food preparation requirements. This often made it necessary for Kelly to prepare one meal for me and a separate meal for the rest of the family. There were many times when people would stop by the house and drop off dinner for the family, already prepared, only needing to be heated. What a relief this was for Kelly!

Your family of strangers may include those who perform service on behalf of the caregiver and the rest of the family. Here are a few things that can help the primary caregiver, but incorporate your own ideas into this "family of strangers" concept:

  • Have a regular schedule of people to prepare meals, do laundry, go shopping, or help with house cleaning.
  • Have someone scheduled to sit with the patient while the caregiver naps, takes a walk, visits a friend, or runs an errand.
  • If there are children, have people take them out for ice cream, to the park, or help them with their homework.

Child Caregivers
When I had my bone marrow transplant, our children were five, seven, and nine. Kelly and I got them involved. There was not a lot that they could do, but I think that it is important that children are made to feel a part of things.

We taught the children to wash their hands just like a surgeon does before performing surgery. Then they were allowed to push the heparin into my catheter. Three children- three tubes. It worked out perfectly for us. Your family is like a community in miniature.

The Patient's Role in Caregiving
The patient has some responsibility. When strangers showed up at my apartment in Ann Arbor, they were often full of questions like, "How should I prepare the food if a meal is required during my shift?" They wanted to know the warning signs, in case something serious happened. They were afraid that they would do something to cause me harm. The patient can dispel, or at least calm, these fears. First, it is important that the patient understand what is required for his or her own care. The patient, along with the health care team, can pass on caregiving information.

In conclusion, I suggest that patients be open to receiving help from others. Don't be too proud to accept it. Think of the times when you were able to assist someone else and the way it made you feel. Accept the help that people are willing to give, and give them the joy that comes with caregiving.

Jim Myers was diagnosed at age 31 with Chronic Myelogenous Leukemia in 1995 after a routine eye exam. He underwent a bone marrow transplant in September the same year and has been in remission ever since. His wife and three children played an important role in his recovery. Jim is a heating and airconditioning service technician. In his view, caregivers often share some of the same emotions and physical fatigue experienced by the patients themselves. He recommends that caregivers take a break now and then from their responsibilities and hopes they will receive ongoing support and encouragement from others.

Back to Caregivers' Guide Main page


Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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