The role of caregiving was bestowed upon me both instantly and gradually over the winter of 2007. Our beloved father’s shocking diagnosis of multiple myeloma blatantly hurled our family into organized chaos with a single phone call from his doctor one chilly December morning. The following four months of our caregiving journey – only to find that it was much too late to save him – culminated in his passing. Busy with funeral arrangements – something completely foreign to us three siblings – and with unspeakable sorrow, caregiving that ended for our father melded into caregiving for our brokenhearted mother. While our father was in treatment, my husband began to feel a mysterious pain in his right toe, which only grew more intense every day. So much so that wearing dress shoes at the funeral was torture and he was limping by the time it was all over. The pain grew stronger and spread to the rest of the foot, making it necessary to use a cane to keep the weight off, then crutches by the end of summer. In July, the neurologist diagnosed him with CRPS, a rare disease of the nervous system that basically makes the brain send the wrong signals – exaggerated pain where there is no reason to feel pain – to the affected parts of the body. Within a year of the first symptom, my husband was forced to retire on disability.
I have to say that neither my brother, nor my sister, nor I saw ourselves in the caregiving role. We were merely doing what sons and daughters would do for their ailing father and widowed mother: we were family taking care of family. Similarly, I was caregiving for my husband, as his wife; just like he’s been caregiving for me as my husband. It was only upon researching cancer and CRPS that I learned of this relatively new term: caregiving. It took me another 2 years to realize that caregiving had become my new role!
For me, caregiving has 2 sides:
- Caregiving itself – the act of taking care of someone, including monitoring health at home & through doctor’s visits, medications, daily living, support programs/benefits/insurance, emotional support for the patient & all of the tasks that the caree used to do that still need to be done
- Caregiving her/himself – caring for the person doing the caregiving: health and emotional well-being
From the very beginning, I saw caregiving as a challenge that I had every intention of successfully managing. Because I knew nothing about the illness and because it didn’t occur to me that anything would go “wrong,” I was not prejudiced by fears or doubts. (Some people call it blind optimism, others call it ignorance. I call it Faith!) As my family learned about the way both multiple myeloma and CRPS could ravage the body and eventually take your life, we knew that the possibility of death was within reach. However, I think that this information only made us more determined in our search for answers, for treatments, for cures. As my sweet Dad softly told my cousin on the phone one Sunday morning, he hoped that the doctor’s treatment worked because we all knew what the alternative was. We knew.
Caregiving in our family was administered as a team. With our Dad, we took on the most important project that we had ever encountered: we each chose tasks that we could accomplish individually, we got the job done on our own, we updated each other on our progress, we reassessed to see what else needed to be done and we started the cycle all over again. We made a fabulous team! I do believe we worked so well together because we had only one focus: Dad’s health. Period. No egos interfered. No resentments existed. Instead, we were respectful of each other, we recognized that we already had a full schedule but would do whatever was necessary to help Dad, we remained level-headed, we discussed whatever needed attention, we didn’t boss each other and gladly let whoever knew how to do something take charge, and we decided on the next course of action together.
I tackled my husband’s illness with the same conviction and assertiveness. The lessons learned through our beautiful father’s illness and passing were guideposts for my husband’s caregiving. Little did I know that I’d need them again so soon!
As a result I have compiled a list of what I’ve done to manage caregiving and I am managing it! The medical requirements right now are few, but I know that that can change at any time. My caregiving consists more of coordinating care, keeping up with paperwork & medications, and doing the things that my husband used to do in addition to carrying on with my role of mother, wife and daughter. I am currently doing long-distance caregiving for my mother as well (but that’s another story!). I hope that these pointers help you manage your caregiving, too.
I have posted a list of what has worked for me in CaregivingCafe Blog
Please visit CaregivingCafe.com for links to information, resources, support & solutions to help you manage caregiving for your loved one.