My three-year caregiving experience was for my mother. She was a strong Romanian woman who valued her independence over anything else. She came to live with me in Canada to help take care of my daughter as I was a single mom at the time while also juggling academia. Eventually, she developed Lewy Body Dementia, she deteriorated rapidly, and required more care, but in my culture, putting my mother in a nursing home is not an option.
My mother was constantly fighting her disease and struggled with the idea of losing her independence. Lewy Body Dementia affects your motor function. In the beginning, I would find bruises on her body and ask her how she got them, and she would tell me she didn’t know. After she was diagnosed, she would refuse to use her cane, and wouldn’t tell me that she needed help. The idea of being a burden or dependent on someone else was too heavy of a weight for my mother to bear. This made my caregiving much more difficult because she would put herself in harm’s way in protection of her independence.
For the first 2 years of her diagnosis, we lived in adjacent condo units. My caregiving roles were cooking, cleaning, sorting her medication, which she often refused to take, and going with her to doctors’ appointments. The last year before she passed was when her care needs increased drastically, and my role became 24/7. I slept on the couch beside her bed in our condo. Although I would plead with her to let me know when she wanted to get up to use the bathroom, she wouldn’t cooperate. She would get up, fall, and yet again, we would call the ambulance. She refused to wear a diaper or use a commode. I put pieces of tape near her bed in hopes of waking up to the sound of rustling when she would get up. I became fearful of falling into a deep sleep so I would take pills to stay awake and more pills to sleep when I could. I stopped speaking to my friends because they kept telling me to put my mother in a home and stopped seeing my daughter because I became so busy. I was struggling to cope.
My mother’s health declined further after a fall in a temporary respite care facility. Everyone from my friends to my family to the social worker kept telling me that I needed time off but there was just no way. Who else would care for her like I could?
Aside from the exhaustion, I was so frustrated and drained emotionally. The helplessness I felt watching my mother becoming weaker and weaker was the worst part. Regardless of the pain, I would definitely do it all again, even though it casted a shadow over my role as a daughter. My advice to someone in a similar situation is to pay attention to what the person you are caring for wants, even though they may not communicate it clearly to you. What I believe my mother really wanted was just to hang out with me. To talk, to laugh, and to play another game of cards.