Jan Kwasigorah
Second Wind St. Louis
October, 2009

Person responsible for meeting the physical and psychological needs of an infant, child, or dependent adult.

A caregiver (also called a caretaker) is the person who has responsibility for meeting the physical and psychological needs of a person, adult or child. The caregiver may be the individual who has legal responsibility and may be a member of the household or extended family guardian. Estimates of the number of people employed as caregivers vary from 14 to 22 million.

This is the “across the desk” social worker or doctor definition of caregiver when making arrangements to enter the world of transplant. As in many other areas of life the full impact can only be understood once one wears the label “caregiver” for a while.
When we made the decision to enter the transplant program I had already been a caregiver for several years, as most of you reading this has. Monitoring meds, making sure you have enough oxygen on hand at all times, tracking doctor appointments and keeping an eye on the general health of your loved one; all a part of the caregiver “job jar.” And usually it comes on slowly so being a caregiver is really just “doing what comes natcherly!”

I am sure more than one of us thought the caregiver title would become obsolete once the surgery and recovery was over. However, the importance of support and care becomes even more important. Diet, taking meds on a timely schedule, tracking prescription refill needs, exercise, and helping choose places that won’t compromise their health (large groups of people at church, malls, restaurants just to name a few) are some of the normal daily routine that needs to be evaluated. And as the transplant date grows further in the past it is easy to get complacent and forget to wear a mask at times, like when going to the Germ Factory also known as doctor or hospital, but it is still very necessary.

All this being said, a caregiver can get very tired, sometimes depressed and even cranky. While in St. Louis there are many folks walking the same walk, at different stages of pre and post transplant and this creates a wonderful network of “been there, done that” with support, ideas and concern that make a caregiver aware that they aren’t alone. But all those needs mentioned already will weigh heavy when isolated to just the two of you. Don’t allow yourself to get burned out.

Once the patient and caregiver return home the close knit support groups now becomes an e-mail/letter/phone support group and the need for local emotional support is needed even more. Reaching out to a local caregiver group will meet two needs. Yours as the caregiver and someone else in the group who may need an idea or the support that you can offer. While each group may be focused on one particular medical area, i.e. Cancer, Alzheimer’s, church small groups, each offers the human touch and concern. I remember seeing a group of friends for the first time after returning home. One friend took me aside and asked how I was doing. I assured her I was fine but it warmed my heart to know that I was a part of their concern and prayers.

If a local group isn’t available for you, call the Second Wind toll free number, 888.855.9643, and ask for a mentor who will be willing to listen and also share some of their experiences. Or better yet, plan a meeting for caregivers in your area. This could be a social outlet that each one would enjoy. And the support will be there, regardless of the medical reason at the start of their journey.

If you have any thoughts you would like to share as a caregiver or one who has been cared for e-mail me at, with your permission we will include them in this new column. And in the meantime, keep on keeping on! Caregiver – the best job I have ever had!