Volume 24, Number 8: August 2023
The Unexpected Reality of Being a Caregiver
By Liliana De Lima
Executive Director, IAHPC
I am writing this from Colombia, where I am visiting my family, but mostly helping with the care of my elderly mother. My mother is 89 years old and although she is not acutely sick, she has several health issues, including recurring infections and chronic back pain as a result of a car accident many years ago. The accident also damaged her left eye, affecting her depth perception and making her vulnerable to falls. She recently developed a large clot in her left leg and is on blood thinners, so she needs to be accompanied all the time. My siblings and I decided to hire caregivers, but my mom does not like it, especially during the day (she has a caregiver at night, but she also sleeps well, for which we are very grateful).
Mom was the anchor of our large family
My mom was not always like this. My parents were married when they were very young (21 and 19). They had eight children: seven are still alive. My dad worked all day and mom took care of us. She was always active and a stronghold in the family. She was quite stern, very strict, and expressed her love and care through food. She baked meals, cakes, pies, and donuts from scratch for everyone, so our home tended to be the neighborhood “open house” among our friends. She welcomed them all but also did not hesitate to scold anyone—friends included—when we misbehaved.
Car accident was the start of a decline
Things changed 34 years ago after that car accident. Mom stopped driving and became dependent. And although she was still active, it was never like she used to be. This was the start of her physical decline. Now that she is almost 90, she still has her strong spirit, but her body and mind are no longer the same. She needs help doing many daily tasks.
Last year she had back surgery and for a while had to use a wheelchair. We removed most of the throw rugs, placed non-skid rugs at her bedside, added grab bars in the shower, moved furniture, and cleared clutter to make wider paths. But she is set in her ways and, after a few weeks, the furniture and rugs went back to where they were before. Some things remain: the bedside non-skid rug and the shower grab bars, which she agrees to.
Her doctor is incredibly supportive
Her primary care physician is very kind and caring. He makes home visits and answers the phone when one of us reaches out or when she calls him. He “gets” her and is a great advocate, balancing benefits versus risks for every decision. He carries out his visits with no hurry and spends time explaining things to her and others. We are grateful that he is such an amazing person, not only in the professional sense.
Knowledge vs. reality
Mom enjoys my visits here and having me around. I do too. But being a caregiver is tough: it requires emotional strength to deal with her cognitive decline, mood swings, and her hearing loss; it requires physical strength to be able to function “on demand"; and it requires clarity of mind to juggle medications, appointments with doctors, and more. Although I have read publications and listened to presentations on the challenges of caregiving, nothing prepares you for the real thing.
Many health professionals have no sense of what it takes, and the demands of caregiving are sometimes unexpected.
I am now in this bubble that lasts while I am here, knowing how blessed we are to have the resources to hire caregivers as needs arise. Many people are unable to do so, either because they cannot afford it, or because there is no one to take on the role, or because the patient does not allow anyone else to care for them.
Setting boundaries; learning acceptance
I will return home in a few days, and have feelings of guilt when I think of leaving her. I also know that our lives are intertwined but are not the same. I tell this to myself, as I tend to get absorbed and dive in without setting boundaries. She is my mom, after all, and this is my time to give back. But I also know that caregiving is draining and that it can take a toll. I do not have the answers, and hence navigate through stuff as things happen. The plans that I make do not always work out, and the ability to adapt and adjust is probably what I had to learn the most—as well as accepting her during these phases of her that we not always recognize.