What I’ve Learned Is…Dementia Doesn’t Have to Be Devastating
by Mary Lee
PAC Lead Outreach Coordinator and Trainer
My journey with dementia began in 2004 when a neurologist confirmed my mother had Vascular Dementia. Okay, so at least we knew what we were dealing with. Mom received a prescription we were told would help, but what we didn’t get is guidance, education, or any resources to learn more.
I scoured the internet, read articles and books, attended educational seminars, and found some information, but was overall disappointed and still searching for detailed information caregivers should know regarding care. I learned some basic knowledge, like it would get worse over time, and currently there isn’t a cure; but I wanted to know specifics on how to prepare for the progression and what to expect in order to provide my mom with the best care possible. Being an only child, and a woman, I knew a lot of her hands-on care would fall on me. As happens sometimes, my dad remained very stubborn, not wanting to learn anything, or make any changes whatsoever to their daily interactions. Lucky for him, my mom was pleasant and easy going - plus they stuck to a routine. I began attending a support group which I found to be extremely helpful. Being with other family members who were also “living it” provided some comfort and a few tips, but also showed me that they did not know much either. We were all seeking more.
Fast forward five years...I was managing okay and seemed to have a natural knack for getting mom to eat, take her pills, get dressed, and sometimes shower, but dad was still refusing to change or hire a caregiver to help him around the house or with mom’s care. It was an emotional rollercoaster between the two of them. He led me to believe he had everything under control, however things continued to change. Next thing I knew she was wandering away from home, making calls at all hours of the night, refusing to bathe, having issues finding her words, becoming incontinent, and staying up all night. Things were definitely progressing and how much worse would it get? And, as it frequently happens, not being prepared, not knowing enough about dementia, and not allowing anyone to assist him on a regular basis took its toll on dad’s health and he ended up in the hospital. This meant I had to move in, hire a caregiver to be with mom during the day so I could be with dad in the hospital, and then come home and care for mom at night. I loved spending more time with my mother, but it was all about her needs and care. It was exhausting! The one good thing that did come out of all of this was my dad finally admitted he was overwhelmed and could not continue this way. After a long discussion, we agreed the next step would be for them to move into a facility.
My parents had already determined where they wanted to live, which was a fancy new retirement community with all levels of care. Mom moved into Skilled Care, since Memory Care wasn’t opened yet, and Dad had a nice apartment in Assisted Living. Moving into a facility introduced more changes and challenges but Dad seemed relieved to relinquish Mom’s care responsibilities to the staff which meant he could just spend time with her and not have to worry so much. I, on the other hand, was not so reassured. I felt guilty about leaving mom by herself without dad and concerned that some of the staff did not seem to know how to deal with the residents experiencing brain change. But at least she was safe and happy to be around others. Dad and I both enjoyed getting to know some of the other families and I began sharing with them the beneficial information and insight I had learned thus far on dementia. It became clear to me that all of my efforts in educating myself were worthwhile and very rewarding to be able to help other family members on the same journey. Mom continued to decline entering the late stages where she could no longer walk or speak, but my visits remained highlights in her day. I was not sure she always knew who I was, but that was okay. 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 continued 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 peacefully passed away.
Realizing how much I enjoyed seniors, and having a knack for educating others on dementia, I began working for a non-medical, in-home care company as a Client Coordinator and Dementia Care Specialist. It was actually my mom who encouraged me. That same year I had a major breakthrough. I attended an educational conference where dementia expert, Teepa Snow, spoke. Finally! I’d found the educator I had been searching for! My life changed in those four hours as I gained valuable dementia awareness and knowledge. Teepa addressed many of the nitty-gritty everyday issues families deal with and how to better handle it. 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. I started by training all of our in-home caregivers and educating clients’ families using a program Teepa created. I went on to attend three of Teepa’s workshops and then took her course to become a PAC Certified Independent Trainer and I also became a Support Group Facilitator for our local Alzheimer’s Association.
When Dad started showing signs of dementia two years later, 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. I stayed very involved in his care even though he lived in an awesome facility – one that used some of Teepa’s methods. I have learned so much about why certain things happen and how to better respond versus react. I am indebted to Teepa for empowering me to see more of the positives of this journey and how one can live a full life. It seems all I could focus on during my mom’s journey were the negatives - the changes, the losses, the frustration, the sadness. Gaining more understanding and awareness on how this disease affected my dad, the symptoms that can occur, and how I too had to change and learn new, effective skills to improve our communication and interactions, made a huge difference.
Dementia can be devastating. It has the power to break up families, turn healthy loved ones into unhealthy ones, to cause mayhem, and depression...but don’t let it.
When we know better, we do better. ~ Maya Angelou.
Join us in offering a more knowledgeable, positive way of caring and interacting with those living with dementia. Learn from Teepa new partnering skills you can do with someone, instead of to someone. Let’s change the culture of this care once and for all. They deserve it. One day, I pray there will be a cure.
But Until There's A Cure..There’s Care. ~ Teepa Snow
Mary has been working in senior care specializing in dementia for nine years. She is a PAC Certified Independent Trainer and CDP. Working for an in-home care company for five years provided her the opportunity to start sharing Teepa’s philosophies and care techniques. Finally finding the education she had been searching for she immersed herself in Positive Approach experiencing first-hand how well Teepa’s philosophies and techniques work. She continued growing her skills becoming certified and went to work for Positive Approach to Care (PAC) in 2016. Her role as Lead Outreach Coordinator allows her to guide and interact with others searching for more knowledge and developing great relationships along the way.