No Matter How Much You Prepare, It Will Be Hard

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Rhianfa. I’m a Gen X woman from British Columbia, Canada. I am currently a caregiver for my mother who has Lewy body dementia.

What did your life look like when you became a caregiver?

I was married, my two children had just graduated high school, and I had a full-time job in accounting. My mom lived down the street and I was supporting her. She moved to my town in 2011 after my father passed from pancreatic cancer. I left my job at the beginning of 2019 to care for her.

Who did you care for and what prompted their need for care?

My mom suffered a fall almost a year after her move and exhibited some small anxieties as she recovered. She mentioned strange incidents like people throwing pine cones on her roof at night and her TV getting hit by lightning.

Around 2015, my mom mentioned that her hand was shaking and she couldn’t stop it. Then, just before a planned knee replacement, we noticed her foot was also trembling. We guessed that she was developing Parkinson’s, and I asked her to consult with her doctor.

While she was under anesthesia for the surgery, she hallucinated the figure of death standing at the foot of her bed. After this, she began exhibiting signs of anxiety around travel which would lead to vomiting and backing out of trips at the last minute. If she traveled, she would be ill throughout the trip.

Her anxiety also manifested in other ways. She obsessed about forgetting to do her taxes. She complained things around the house stopped working, like the television and furnace. She would call me randomly and apologize for conversations we had had earlier, even though I hadn’t talked to her all day. Then one day my mom said she had seen my six-year-old niece in her bedroom, but she lived thousands of miles away in Ontario.

After that, I did some research and came across Lewy body dementia (LBD). Keep in mind my mom was still without a Parkinson’s diagnosis at that point. I was working full time and the phone calls were seriously affecting my work, so I began convincing her to move in with me.

About a month after she moved in, she was diagnosed with Lewy body dementia. Four months later, I left my job to care for her. Spending all day with her, I saw that she was in bad shape.

My relationship with my mother is complex. My parents emotionally abused me as a child. They would gaslight and scapegoat me. I had sort of made peace with my mom by the time she moved in, but there were blips. I now think it was her confusion and frustration which she usually directed at me. I became defensive as her confusion manifested in ways similar to my childhood abuse — language, name calling, changing stories, and questioning reality.

I became a caregiver for my mom because I was in a very good place psychologically with lots of support from my husband. It became clear my mom would need help and a safer place to live. It fell on me because my siblings both lived far away in locations that would not work for someone with mobility issues. Staying with me meant my mom could still see her friends.

What surprised you about caregiving?

I am not sure that anything surprised me about caregiving, really. I had researched the heck out of it and spent a lot of time thinking about what it would be like and talking to others who had done it.

But it’s like being pregnant. You can read all the books and talk to other moms, but in the end there’s labor and no amount of preparation really captures the reality of being a new mom.

How do you try to balance being a caregiver while caring for yourself?

I try to remind myself that I am not responsible for entertaining my mom every minute of every day. I spend as much time as I can doing my own thing. We have our own spaces in separate areas of the house so we can have time apart.

I smoke cigarettes and refuse to beat myself up about it. I belong to a dementia support group, have a therapist, and rely on a circle of friends who have also cared for their aging parents. I find reading and commenting on Reddit helpful because I can encourage others and share the funnier sides of dementia.

What resource would you recommend to caregivers?

The best resources I found early on were the Lewy Body Dementia Association, Mayo Clinic, and Alzheimer’s Association. I found it helpful to read everything I could. It equipped me to better understand what was happening for mum and to put myself in her shoes.

Being able to think and understand what was motivating her behavior and emotions (fear, anger, confusion, and grief) really helped me to find compassion and not react to how these emotions were manifesting. I didn’t take it personally, although I failed more in the early days.

What advice would you give to caregivers?

I was fortunate to have a super supportive husband and kids. My friends understand and support me. Therapy and the support group were valuable.

I would say it doesn’t matter how much you prepare. It will still be hard. You won’t be able to make everything 100% safe and you won’t be able to anticipate everything. But you will survive and get through it. It probably wouldn’t have helped in the first few months, but it would have been good to know on the bad days.

Where to find Rhianfa Riel

Rhianfa is the owner of Milk Crate Coaching, which offers coaching support to those who are caregiving at home for loved ones.