Alisha describes the process of writing her book as “soul wrenching,” and lingering on this phrase for a moment, it feels like the act of caregiving can be soul wrenching in and of itself. What (has) surprised you most about assuming this role and/or what do you think most of us fail to understand about the role of caregiving?
NANCIE: This answer is easy for me. I’ve thought about it a lot. I was surprised becoming a caregiver wasn’t as easy as turning on a light switch. You aren’t just the adult child one day and the caregiver the next. I have a lot of background and experience in caring for human beings. I was a nursing student (for a short time), a crisis counselor, a member of a local rescue squad, a Girl Scout Troop Leader, and the mother of three children. All of this provided experience dealing with situations requiring basic first aid to assisting with more serious situations. I observed my father caring for my terminally ill mother. I felt confident that I was prepared–technically. But, I was and still am, even now, surprised by what I don’t know and how afraid I won’t know what I need to know at any given time. I still second-guess myself.
Also, I was so concerned about the mechanics of caregiving (prescriptions, appointment scheduling, what walker is better than another, which blood pressure cuff can he work and read himself, if necessary) that I often forgot the relationship side of things—the human nature in the caregiver-cared for relationship. I was afraid to insist that my father acknowledge my need to be involved in his doctors’ appointments, as the point person when he was admitted to the hospital, and when I knew I needed for him to give me–as well as my brother–authorization to speak for him if he was unable to speak for himself or correct him if his information was inaccurate when he was not able to speak for himself. I should not have been surprised. Any kinks in our lifelong personal relationship revealed themselves exponentially in this new one. How in the world did I think it would be easier for me to assume a position of confident knowledge, authority, or even partnership with my father when I had not felt comfortable doing it my whole life? There was work that had to be done on our relationship first. When I speak to other caregivers or read about their fears and frustrations, I realize from my own experience that you do not assume the role of caregiving. You must grow into it and see the person you care for as a human being, not just a parent or other family member. It’s been a blessing for me to have moved in with dad while he was still very independent and have the luxury of getting to know him so well. Understanding who he is, why he reacts the way he does, why I react to his reactions instead of responding in constructive ways to one another has been a learning process. Though It’s been very rocky at times, each instance when my father looks at me because he cannot hear or does not understand what has been said to him, when he points to me and says, “Tell my daughter. She takes care of me.”, and those times I step up, don’t look at him first to see if it’s okay for me to say something to his physician, I feel solid in the partnership we’re forming.
MIKE: Personally, I resonated in many ways with Alisha’s response and her story, but I don’t know if I would use the term “soul wrenching” to describe the experience for me. My own journey, though certainly difficult, was both character strengthening, insight building and incredibly rewarding. Throughout my caregiving and the book, I would reflect that it felt like I had been born for this role. One of my favorite films was the John Candy/Maureen O’Hara starrer Only the Lonely. That Columbus directed film looks at an Irish American family through the eyes of the youngest son. In traditional families like that one child was usually “given up to the church” and one was expected to forego their dreams and desires “to take care of the parents.” Unfortunately, for John Candy, his mother is blind to his sacrifice and overly demanding. My own parents, especially my mother, were extremely cognizant of all that I did for them. Still, I began my caregiving just as I was beginning my career in financial advising and failed because caregiving became such a primary focus.
The surprises I discovered mostly related to how easily I assumed the role and how shocking it was that others had such a hard time doing it. This was true when I would look at my siblings, especially the one who lived near to my mother during most of her illness. He was often unable to recognize that our father might be needing his assistance, he was completely hands off. When they came north at the start of the book one of my mom’s doctors informs me of how sick she is. I was taken aback. That day I asked my brother what he understood of her condition and he was totally in the dark, willing to let anyone else assume responsibility. I would see it in other families as well. Spouses, children, and caregivers not asking questions or demanding treatments or even simple comforts like changing a dirty diaper. The other eye-opener for me was how I might be being perceived by the families of my patients in the hospitals where I had worked. When I returned to Psychology after failing at financial advising, my work was impacted in numerous ways by the observations I made of how both patients and families are treated by doctors, nurses and other hospital staff. I think families need to understand that they are their loved one’s advocate, their voice at times. If they don’t know what to do, get help.
ALISHA: Hmm, soul-wrenching is an umbrella term that I found holds the vast array of feelings that went into caregiving for me. There are many layers of grief, and many layers of deep connection and memory making that exist within caregiving, and all of them impacted my soul tremendously. It was very difficult for me to watch my parents, those who were once invincible and unharmable pillars of stability, slowly mortalize and succumb to bodily decline. Not that I was naive to this process being a natural part of life, but I think what surprised me the most about caregiving was just how hard it would be to watch this decline from a front row seat. My mom was such a go-getter and an active participant in life who continued to learn and try new things in her retirement. To watch her strong-spirited self-walk into the hospital as she was having a heart attack without feeling much of anything was a game changer. For the first year of her illness, most of which was in a hospital setting, her ping-pong match with life and death surprised me so deeply, as this version of her was not at all who I knew my mom to be. As my relationship with caregiving grew, I began to understand also how deeply tiring it was. And how much I welcomed any help eventually. And that was just part-time for me. My dad was the full time caregiver, and I began to recognize how much he struggled to ask for help in his never ending role of meal prep, dishes, laundry, caring for Sniff (our family dog), transporting my mom to and from medical appointments and dialysis, cleaning the house, ordering medical supplies, coordinating insurance and medical bills, understanding insurance and medical bills…it was a maze of SO MUCH.
Without a break, it builds up and is utterly exhausting. Help is a requirement, and in my opinion, you have to learn how to ask for help in order to survive it. This really sunk in when my dad had his heart attack 6 months into my mom’s illness, and both of my parents were in the ICU as next door neighbors. It was wild to see both of them in their mortal frailty, and it was hard not to grapple with my own mortality. Some people can do this with ease, and those some people are not me. I was so surprised at how altering this was for my psyche to wrap my head around individuating from my parents while also seeing them connected to tubes and machines to keep them alive and wanting more time to figure all of that out. What I really don’t think is understood about the role of caregiving is the amount of intentional, non-negotiable self-care it takes in order to care give well. It can look as simple as finding time for a five-minute walk in the mornings, or picking a certain kind of creamer for your morning coffee that makes you happy, but you need something. Something that is just yours. And the ability to ask for help or the willingness to do the work it takes to become able to ask for help. Either way, it is a very difficult road to go alone, and if it’s not done, the old saying typically wins: “The caregiver usually dies first.”