By Lorrie Beauchamp
I leaped into caregiving for my parents with all the confidence and swagger of an entrepreneur, and was quickly brought to my knees by the reality of Alzheimer’s. What began as a mission of love morphed into a mountain of learning.
My mother’s Alzheimer’s was aggressive and watching her suffer was traumatic; my father’s dementia requires enormous patience. He wanted to help with Mom, and we tried to include him as much as we could. Emotions were always running high, with Mom’s mood swings dictating our quality-of-life choices and decisions.
Of course, as most family caregivers know, it’s not just personal caregiving that our loved ones need. There’s also the accounting, the medical visits, caring for the home, hiring and managing extra help, organizing the food and doing the shopping, the cooking, the cleaning… and then there’s the need to be up and positive and “happy”, especially for their sake. It’s a lot to take on, and I quickly realized how poorly equipped I was for this role.
After one too many evenings sobbing on my bed, racked with guilt and anxiety, frustrated with the lack of intelligent resources and wishing I could do more for my parents, I turned to writing as therapy. I was reluctant to do so at first, thinking about my family’s privacy, but then I realized that keeping Alzheimer’s “hushed” was exactly what needs to change! Dementia should be talked about and normalized, because the fear-mongering has done a lot of damage, and the drug companies are the only ones prospering.
I built my blog “Unforgettable: Lessons and Love From Alzheimer’s Word” so that I could pass on the lessons I was (and still am) learning. Of course, I rarely had time to tend to it, and so it never garnered a wide audience. Nonetheless, each month I sat down to sort through my tangled thoughts and convey a lesson learned. Along the way, I discovered other caregivers sharing their stories on social media, and I realized that we were a huge and growing community.
My mother passed away recently in her home, surrounded by family and her husband of 64 years. She fought bravely for four long years, and we were able to honor her wish to stay in her home throughout. Watching my mother leave us was an incredibly moving and spiritual experience; I now understand the beauty of death, and have new respect for the home as hospice.
There are many angels walking quietly among us, and people who choose to be caregivers have earned my everlasting awe and respect. And whether we’re trained professionals or just “trained on the job” as I was, it’s good to know that we can turn to each other for support and sanity. The health care system let me down, but the community did not.
I support and applaud groups and organizations that empower us to share, and am honoured to be part of this soulful group of authors who are dedicated to improving the quality of life for people with dementia. We’re all in this together.