By Anita Harvey
I felt blessed that the sacrifices I made in order to care for Mother seemed to be paying off. She was safe, well, and surprisingly happy. She had finally transitioned from living alone in her condo to an assisted living facility. I slept better at night knowing that someone would be looking out for her and checking on her regularly. I was finally able to spend more time taking care of myself, although I still had to invest a lot of time overseeing her care. My expectation of the staff’s ability to understand and care for someone with dementia was far from reality.
I knew we were lucky: Mother’s disease seemed slow to progress, she had the means to support herself financially, good insurance, and her daughters acting as her advocates. What could go wrong? I found out the terrifying answer to that question the first time Mother was hospitalized for anemia. To my horror, she was treated like any other patient. She was expected to follow instructions and remember where she was; no accommodations were made for her disease. It didn’t take long to realize the hospital didn’t have the adequate staff or resources to care for my mother. My sister and I stayed by her side 24/7 to advocate for her until she was released. After her first hospitalization, I knew it was imperative to keep her out of the hospital if I wanted her to survive.
Unfortunately, Mother was hospitalized on two more occasions. These interactions with the healthcare system were every bit as disappointing and shocking as the first. No accommodations were ever made for her dementia. My sister and I had to be constantly present to advocate for the basic care she needed for a good outcome. I became more cynical with each visit to the hospital. Her last hospitalization was for a broken leg that required long-term care. Despite our wishes, she was discharged to a skilled nursing facility in our area, the only one that had a bed available. During her stay, the substandard care she received almost cost my mother her life. The very people we put our trust in to help us almost destroyed everything we had fought so hard to achieve.
Once again, my sister and I were forced to intervene and worked hard to save her. I found her a good adult family home (another difficult task), and Mother made a full recovery. The trauma of her injury and lack of adequate aftercare had accelerated the progression of her disease, and it took a while for her to settle into her new environment. During this time, something truly amazing happened. I let go of the pent-up anger and resentment I had harbored for so long. Instead, I focused that energy on determining what I could do to help others avoid what we had just endured. To that end, I wrote my memoir, “Who Is Today?” and our experiences with Alzheimer’s became something positive – such an outcome seemed impossible in the beginning.
Despite the ongoing tragedy of my mother’s Alzheimer’s, I now live with more purpose, passion, and joy than I would have ever thought possible. I’m so thankful that I still have my mother to care for. Life has given me a great gift: the ability to make a positive difference in my mother’s life (even though she sometimes doesn’t recognize who I am). Through my writing, advocacy, and financial donation to the Alzheimer’s Association, I hope to lend my voice to those who have lost loved ones to dementia, and join the conversation on how our healthcare system can be changed to better serve dementia patients and their caregivers.
Anita was born in western Washington and has lived in the area her entire life. She is married to an incredibly supportive husband, Lyle. She is the author of Who Is Today? Learn more and purchase the book at www.whoistoday.com.
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