Caregivers: Living Life On-Call

Everyday I wake up to the sound of my mother’s voice. She calls for me through the baby monitor set up in her room. In the middle of the night, first thing in the morning and throughout the day, I am always “on call”. My mother is 105 years old and struggles with dementia. As her full-time caregiver, dementia has become a struggle for me as well.

I never expected to be using a baby monitor at 62 years of age, but life is full of surprises.

One of my biggest surprises came ten years ago when I chose to quit my job and take care of my mother. The caregiver title sounded straight forward, but I quickly learned that I was not simply swapping out one job for another. In fact, I was about to become my mother’s entertainer (the one who makes her smile), stylist (the one who buys her medical equipment and makes sure her trousers fit), chef (the one that purees her food) and personal trainer (the one that keeps her moving and shaking). My days are long and I’m usually left feeling exhausted. I barely noticed when the once supportive relatives slowly faded out of contact. Even the doctors and hospital staff failed to mention the many limitations and endless bureaucracy involved with obtaining homecare support. It was clear, I hadn’t just quit my job, but I had quit my life.

A decade later, I think I’m settled into my role as a caregiver. I take my time and try my best to enjoy my days with my mother. Do I face challenges? Have I made sacrifices? Yes, and yes. But my journey has added depth and complexity to my human experience. I am no longer overwhelmed by the difficult choices I face each day. Being around someone with a mental illness can often take a toll on your own mental well-being. In fact, I’m sometimes even ashamed to admit how I feel. However, I try to manage my feelings in a healthy way whenever possible. Let me give you a few examples of the feelings that I’ve struggled with the most:

Anger & Resentment

I am the oldest of four sisters. When I massage my mother’s body aches or fold her clothes, I think about why they never visit or call. I used to ask for support and felt resentful when they declined, but I am no longer upset by this. The choice to care for my mother is my own and I will make all the personal sacrifices involved with my decision, regardless of anyone else. The hardest part? Some days my mother looks into my eyes and asks if her other daughters ever come to visit. I always say that they are busy with work and kids during the week, but visit every weekend.

Guilt & Forgiveness

When my mother asks me not to leave her alone at night, it crushes me to close the door behind me. If she asks me what’s for dinner for the 152nd time in a single hour, I am ashamed when I lose my temper. And I’m always so sorry when I graze her elbow or knick her finger as I wheel her around a world that’s not built for wheelchairs. I tell myself that I cannot be everywhere and do everything for my mother, but I am here and am doing my best so I should never feel guilty. I’ve learned to forgive myself for my mistakes and take care of myself as well as I take care of my mother. Without a good night’s sleep or some distance from my mother, I may not be healthy enough to take care of my mother. What then?

Love & Loyalty

My dear husband and partner in life did not want me to become a caregiver. He suggested that we admit my mother into a nursing home. When I resisted, he asked me to choose: mother or husband. Luckily, he retracted the ultimatum and supports me as my co-caregiver these days. He does not complain when my mother’s cries wake him at night and he does not flinch when her bowel movements are audible during dinner. It breaks my heart to see him set aside his grand retirement plans to spend his golden years helping care for my golden girl. I’ve seen the true strength of our love and it amazes me. As for my mother, she drives me crazy some days, but I am happy I chose to keep her at home. There are so many days where she is entirely unreasonable and moody, but on the days when she is playful and warm, I feel so blessed to be in her warm embrace.

There are still days when I feel like life isn’t fair. This holiday season, I won’t be able to attend any Christmas parties. If my mother doesn’t sleep well on Christmas eve, I won’t be able to spend as much time with my kids who will be visiting for the holidays. And while I ache for the carefree days without worrying about my crazy old mother, I simply cannot leave her. I love her. Ah, love. It is such a confused and diluted emotion. It’s hard, but I am so lucky to have it in my life. So as I live my life “on call” like so many other caregivers do, I always remind myself of why I accepted this responsibility and how much I’ve grown because of it.

–Shelly Buliani

 

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