Keith's Story: Being a Caregiver of a Pre-Transplant Patient

I am Keith, father of a pre-intestinal transplant patient indicated by intestinal failure from pseudo-obstruction. I was her caregiver for 14 months after we relocated, to pursue care from an intestinal transplant team. Prior to this time, we had lived apart for over 20 years.

As I reflect on the months we spent together, I remember encountering various challenges. For example, seeing my daughter going through times of struggle and pain was one of my greatest challenges. Such experiences brought to the forefront the question; how I can be a proficient caregiver? There were several things I had to achieve as her caregiver. In the following paragraphs, I will share some of the things I found to be helpful as a caregiver.

Soon after our first meeting with the transplant team, it was evident that being an organizer would be one of my duties. A caregiver is to keep track of the patient’s appointments, and which medications the patient will need and when. Placing a large calendar on the side of our refrigerator was a simple, but important tool we learned to use. It helped us keep a current list of medical appointments, when the home health nurse visits, support group meetings, community dinners, and educational sessions would be held. The calendar needed to be fluid and easy to update, so we used a white board.

A few weeks of after moving into our home away from home it became apparent that the caregiver support group meetings were important.  At these meetings I met other caregivers and discovered that the things I was experiencing was not unique. This discovery brought calm to my mind. To hear that feeling overwhelmed was not because of a weakness, but because we caregivers were being given challenges that most of us were not schooled to handle. For example, exhaustion and how to function with little sleep was one of our shared challenges. We assured each other that it was okay to ask others in the family and community for help. There were few fathers there as caregivers and there was on other father whom I quickly became friends. Together we discovered it was okay to leave our daughters for short periods of time as we enjoyed lunch, dinner, or coffee together.  I was fortunate to have a son-in-law who took time from work to come spend time with us, and gave me the opportunity to rest and regroup. As the weeks turned into months, and the months to over a year, I cherished my time with other caregivers.

Another role I fulfilled was that of housekeeper. It may sound mundane, but keeping our apartment clean and disinfected was very important. Having an organized and clean place for the patient’s medicines, supplies, and equipment storage is an important health issue. Someone like my daughter, who was very ill, needed to keep germs and viruses at bay. Therefore, I had to learn how to keep her equipment clean after every use. Using a special soap, I washed my hands like a surgeon and used surgical gloves. I had to be very intentional about cleaning everything we used and handled.

As a caregiver it was necessary to have a strong foundation to work from. Having a support group or friends nearby was important. Keeping connected to family and friends back home with frequent phone calls, letters, and cards from family was a lifegiving breath of fresh air. Thanks to technology we could use our cell phones and computers and have a visual connection with family and friends. I would recommend to anyone asked to be a caregiver to learn ahead of time how to use these communication tools.

An important aspect of self-care is spiritual wellbeing. There are numerous ways to keep connected to a “higher power” and be aware of the working of that power in your life. No matter how you approach spiritual wellbeing, do it. I encountered times that wore me down, but there were just as many experiences that picked me up. Be aware of the times that nourish spiritually.  As mentioned before, the support group was one for me. I also attended a service of worship weekly, went to concerts, and museums. Simply taking a walk could refresh my mind and spirit. I tried to keep my sketch pad and pencils with me. The time sitting next to the hospital bed, or in the waiting room waiting for an appointment, gave me some time to draw or read a book.

One of the hardest experiences for us came in the form of a “dry run” when we received a call that a match had been found for my daughter’s transplant and we were to come to the hospital. The excitement and expectations ran high! I waited for her surgery for hours at the hospital with another caregiver while my daughter was prepared for surgery. When the transplant team told reported the transplant was aborted it was a hard let down; and then see to my daughter’s face when she returned to the hospital room after receiving the news, was tough. The best way I can describe the experience is to say it was like ice skating flawlessly, and then falling hard on your behind! It was an abrupt and jarring experience. But then we got up, dusted ourselves off, and went back to the routine of appointments and meetings.

As a caregiver I have had the opportunity to witness the strength and courage of my daughter and to see a caring, supportive community of nurses, doctors, volunteers, other patients, caregivers, friends, and family gathered around her. I also made some friendships that will last a lifetime. Becoming a part of the “transplant family” has been a life changing experience, and my faith in the human race was strengthened.