by Mary B. Lee, Certified Trainer, Positive Approach(TM)
My journey with dementia began in 2004 when my mother was diagnosed with Alzheimer’s and vascular dementia at the age of 73. We had a diagnosis, but no guidance, education or answers to our endless questions. She had already survived triple by-pass surgery and lung cancer…and now dementia?
I scoured the internet, read articles and books, attended educational seminars, but was still left disappointed and searching. I wanted to know what to prepare for and specific steps to take. As happens with so many spouses, my dad remained in denial, very stubborn, not wanting to learn anything about dementia or make any changes whatsoever to their daily interactions. I gained the most benefit attending an Alzheimer’s support group (thank you Alzheimer’s Association!) where I was among other family members who were “living it” too and dealing with this devastating disease on a daily basis, but again, there was little education, which we all were seeking.
Five years into mom’s diagnosis, dad was still refusing to hire a caregiver or change, and now mom was wandering away from home, up all night and becoming incontinent. And, as so frequently happens, the 24/7 care giving had taken a toll on dad’s health and I eventually had to take the reins. Dad finally admitted that he was overwhelmed and we agreed they would move into an assisted living community with mom living in their memory care.
Living in a community introduced more changes to deal with but dad seemed relieved to relinquish mom’s care responsibilities. In time, I got to know other families and began sharing with them the beneficial information and insight I had learned. It became clear to me that all of my efforts in educating myself were worthwhile and very rewarding to help other family members on the same journey. Mom continued to decline entering the late stages of the disease. She could no longer walk or speak, but my visits and music therapy were highlights to her day. I was not sure mom knew me, but she certainly looked happy to see me and rejoiced in my hugs. Dad had finally accepted the reality of the situation and rarely left mom’s side. He continues to grieve the long, slow loss of his wife of 59 years. The last two weeks of mom’s journey were spent in hospice care before she finally succumbed to the disease in March 2010.
In 2011, I began working with Senior Helpers In-Home Care as their Dementia Care Specialist, and that same year, I had a major breakthrough. I attended the Alzheimer’s Association’s educational conference where dementia expert, Teepa Snow, spoke.
After years of looking I’d found the educator I had been searching for! My life changed in those 4 hours as I gained valuable awareness and knowledge. Teepa addressed many of the nitty gritty everyday issues families deal with and I couldn’t wait to apply the skills and techniques I’d learned! I quickly realized EVERY FAMILY dealing with dementia had an enormous need that was not being addressed which set me on a path to try and change that.
Ironically that same year, Teepa partnered with Senior Helpers National in developing a dementia training program. I began training all of our caregivers, and educating clients’ families. When Dad started showing signs of dementia in 2012, I was sad, but so grateful to have the knowledge, insight and understanding on how to better care for him in a more positive and affirmative manner. We have shared many happy times together, and I look forward to many more. I am indebted to Teepa for empowering me to see more of the positives of this journey. It seems all I could focus on during my mom’s journey were the negatives – the changes, the losses, the frustration, the sadness. With my knowledge of how this disease is affecting my dad, I can now apply effective skills to improve our interactions.
Last year I completed Teepa’s program to become a Certified Positive Approach (TM) Trainer and was honored when Teepa asked me to join her team. It’s so gratifying to finally fulfill my passion and calling to educate and assist families and professionals in a more positive approach to dementia care. One day, there will be a cure for this disease. But until there’s a cure, there is CARE.