As a daughter, I wanted to take care of my parents, even if I didn’t know what that entailed. My father tells a story of me at age four, holding his hand and looking up and saying, “Daddy, I am going to be a nurse when I grow up so I can take care of you.”
So when my father asked me if he could move into my home in Michigan from his apartment in Indiana, I didn’t think much about how that might impact my life. I wanted to help, and I knew things had not been easy since my mother’s death. He couldn’t seem to decide where he belonged. After discussing it with my husband, we decided it was okay and that it might be nice for our three children to have their grandfather around. And it was okay and nice for a time.
My father started to have some health issues. He wasn’t exactly a healthy person to begin with, but he seemed to start to decline about a year after moving in with us. I went to appointments with him; I encouraged him to take his medication properly and tried to be what I thought was a caring and responsible daughter.
At that time, I would not have characterized myself as a caregiver. I was working on my master’s degree in geriatric social work, and I felt like I was well-equipped to understand his needs. Perhaps I did understand his needs, but I didn’t understand mine. And I certainly didn’t understand that his needs and his wishes may not match. I didn’t know that this would be the beginning of my role confusion.
I felt like I was living a double life. But unlike the code names in the movie, Tinker Tailor Soldier Spy, I am only one person, not four double agents. My family and friends referred to me as the daughter/caregiver/boss/social worker for my 85-year-old father. Depending on the day or the person you asked, I could’ve been any one of those at any given moment. You might say, Aren’t you always a daughter? And my answer would be, Yes, but it hasn’t always felt that way.
In my eyes, caregiver has always meant someone who is more hands on. As for boss, it’s not a role I identified with, but there were people, including my dad, who at times referred to me as such. As for social worker, I am a therapist to older adults and the people who love and care for them.
According to the Family Caregiver Alliance, “A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks.” By this definition, I am not a caregiver because I do not assist with bathing, grooming, dressing, toileting, etc. What I assist with are called instrumental activities of daily living (IADLs). These include managing finances, medications, medical appointments. My dad probably would not describe me as his caregiver, just his daughter who helps him “take care of things.”
During a doctor’s appointment with my dad, a nurse wanted to instruct me on how to clean and care for my father’s catheter. I immediately stated, “I’m sorry, but I’m not that kind of daughter,” which meant, I must not be a caregiver. I knew then that boundaries were necessary and that I had limitations as to what I could do or was willing to do. Since I couldn’t participate in the physical side of his care with any comfort, I threw myself into managing his medications and appointments and his overall well-being. Here is where I became the boss. Again, I did not understand his wishes or perspective. He saw me as his youngest child, not someone telling him what he should do.
I struggled with trying to find some balance. I didn’t like being characterized as a boss, and knew that it was time to relinquish that role. My father did not want me to be his boss at all. He can make his own decisions and did so even when I thought they were the wrong decisions. I saw it as my duty to enforce what the doctors said was best for him. We butted heads on more than one occasion. I was miserable and burned out and he was irritated.
My father could no longer live in my home due to his physical limitations with stairs, so I thought it would be best for both of us if he moved into a senior apartment. He agreed, sort of. He went along with this decision, but it became evident that he was resentful and unhappy. So, he moved out. He went back to Indiana to live with my brother and didn’t even bother to tell me. Eventually he came back.
In my practice as a social worker today, I counsel many people with caregiver stress and burnout. One of the first things we do is try to figure out the caregiver’s role and if this role is sustainable. Some caregivers don’t have other family members to help or cannot afford additional help, so together we must find community resources to allow the caregiver a break to be who they are and to take on the role that best suits them and the one they are caring for.
Sometimes it feels selfish to have other people provide care. Why did my discomfort in providing physical care outweigh my dad’s need for assistance? There are plenty of daughters, sons, spouses who do provide that type of care and somehow do it without being mortified. Rob Lowe, the actor, once penned an article that talked about his role as caregiver for his mother. He said, “When you’re caring for a loved one, there’s nothing you won’t do (or sacrifice) to give them as much comfort and peace of mind as you can possibly provide.” That made me feel selfish, but then I thought again about my dad’s wishes. He didn’t want me providing physical care anymore than I did. He often introduced me as his “baby” (I am the youngest of six kids) when he wasn’t telling people I was his boss. So, I pay for other people to provide that care, as I am sure Rob Lowe does as well.
The role of boss that I had created for myself with my father was unsustainable because his wishes weren’t being taken into consideration. When I started listening to him and what he wanted, I was able to let go of frustrations. I still offer advice as a geriatric social worker, but he doesn’t always listen, and I accept that and even pick up the pieces when his decisions aren’t the best.
So, I’m not daughter/caregiver/boss/social worker. I found a way back to the role of “daughter who helps take care of things,” and that is a role that we can both live with.