This post is for the primary/main Caregivers taking care of us who’ve had stem cell transplants due to blood cancers. Your duties and responsibilities as a caregiver will be stressful and demanding. To prepare for this long recovery, you must learn to take care of yourself FIRST otherwise you will burn out quickly.
When someone in your tribe or circle has or develops a serious illness, caregiving becomes a family-friends-community affair. Besides my immediate family, friends and neighbors offered their support and help for which I was very grateful.
My advice to all Caregivers is this, “YOU MUST TAKE CARE GOOD CARE OF YOURSELF” so you are able to help and care for us who are ill. You cannot be of help if you are too weak from lack of eating or unable to function because you are sleep deprived.
Let me share a few stories with you…
- When I was hospitalized for the initial 4 weeks, my husband insisted on staying overnight during the first week until I saw how sleep deprivation and stress of a critical situation was taking its toll on HIS health, both physical and emotional. I then insisted he go home every night to sleep in order to prepare for the onslaught of the coming days.
- After my first round of chemotherapy to kill the leukemia cells in my bone marrow, my long black hair started falling out, strand by strand at first, then in clumps. I didn’t want to look as if I had mange, so I decided to have the health technician shave my head. It was also my way of controlling how I was going to lose my hair…slowly and naturally or by my own hand. Once done, my ever supportive husband wanted to shave HIS head which I immediately said “No.”
- Immediately after my stem cell transplant, I had to go to the transplant clinic EVERY day for 4-6 hours a day, on weekends and holidays for 1 month. After that period, I was gradually weaned from daily to several times weekly. During these times, my family coordinated among themselves who would drive me to the clinic, stay with me, and drive me back home. Believe me when I say it was a logistics head turner. The point I’m getting at is you will need the support of anyone you can reach out to for help…neighbors, friends, club and association members, and colleagues.
Here are a few suggestions for caregivers and for patients when it comes to a long recovery back to health:
- insist on your primary caregiver(s) get respite care. Respite care is providing temporary relief from caregiver duties for the preservation of caregivers’ mental health. This ‘free’ time is to be used for self-care, ‘me time’, ‘quiet time.’ To meet with a friend, pursue hobbies, go to the gym. Self-care time is more important than you realize. Your caregiver(s) may tell you they don’t need or want ‘me-time’, but you, the patient, must tell them it is not negotiable.
- Although your goal is to heal from the chemotherapies and stem cell transplant, do as much as possible for yourself.
- Be grateful and thank your caregivers daily. Without them, you will not be alive.
- Ask others for help with simple daily tasks. Most people want to help but don’t how to help you the most. YOU know what you need help with, just ask. Would having prepared meals help? Do you need help with driving your loved one to medical appointments? What about simple activities like cleaning the house, grocery shopping, help with kids if you have them?
- Don’t be a martyr and try to do everything yourself…you can’t.
- Don’t let pride get in the way of asking for help. You may be a very independent and resourceful person, but you won’t be able to care for your loved one alone…it’s not possible.
- Caregiving for others and yourself takes a village; no one is an island anymore.