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16 years ago today… Actually, sometime between 10pm and 6am, my grandmother walked out of her Assisted living facility in Oakley, Utah. Several hours later, her body was found a little less than a mile away. She died of hypothermia.
Today, I remember my beautiful Grandma Bonnie… and share with you a very small part of her story.
I wrote this article for one of my books, a similar letter to the Salt Lake Tribune newspaper a few months after her death… The picture is our family at the Alzheimer’s walk in Salt Lake City, Utah the year after Grandmas death.
I’ve shared this story in many classes and today, I felt guided to share it with you – SDJ <3
Experience: BE a voice
My Grandmother began showing signs of Alzheimer’s about four years before she died. The diagnosis of the disease was not a surprise, as the signs had been there for years. However, it was certainly a challenge to find the purpose of this particular disease, as it seems so devastating, from almost every point of view.
Once diagnosed, and recognizing that safety was becoming an issue, my independent Grandmother had to leave her home to move in with her daughters. It was a difficult thing for her to do and she was, as one would guess, not happy about it. I remember her telling my mom that now that her house was sold, she didn’t have a home. A common feeling amongst those that are stepping in between self care and assisted living in some form. My Mom assured her that their homes were now hers. Having 5 daughters to depend on was certainly a relief after my Grandpa died, but giving up her independence was difficult. Within a year or so of his death the disease had progressed to a point where it was impossible for them to give her the quality of care she needed. They also found it increasing difficult to keep track of her. She was a wanderer. She just could not sit still for a moment and so now safety had become a real issue.
The daughters made the decision to place her in an Assisted Living Care Center where she would get the 24-hour care that she needed. They chose an Assisted Living Facility with a secure Alzheimer’s wing in Tucson, where my mother lived. The weather was beautiful in Arizona over the winter months and she really loved the environment. My mom would visit her daily, facilitating activities for everyone. They would sing, play games, and do little brain teasers. It was a heart opening and heart breaking experience, all at the same time. Even though Alzheimer’s can be a devastating disease, I could see its purpose. It can be difficult to understand, but in some ways, Alzheimer’s let me get to know my grandma on a deeper level. She was more present and in the moment than I had ever known her to be. You see my Grandma was an alcoholic my entire life, and most of her life as well, and Alzheimer’s caused her to forget that, so she no longer drank. I know, it is ironic, isn’t it? So you can understand how precious our time with her was! It was especially cool to get to see her so often because the previous 10 years I had lived out-of-state. During these times I really felt like we got to spend a lot of good quality time together. I had a baby at the time and my sons, my mom, Grandma and I would all sing nursery rhymes, eat ice cream, and just laugh and play … it was a very special time together – the times I miss the most!
Spring came and the weather got warmer and the decision was made for her to be in a cooler climate, were she could be outside more. The Arizona summers are extremely hot, and her being a wanderer was concerning because it was just too hot in Arizona for her to be outside. So, she moved back to Utah, where she was originally from and where the majority of the family lived. They chose a new Assisted Living Center with a secure Alzheimer’s wing and she moved in April 2000. She lived there for 8 months.
December 31, 2000 was a pretty normal day for me. I woke up around 6 am and made breakfast for my family. Christmas had just passed, it was New Year’s Eve and my brother had come to visit for a few days . We were all in the kitchen just talking about the night’s plans to celebrate “The Real Millennium”. It was time to really celebrate the New Year and we had decided to actually go out and have some fun instead of fall asleep watching the ball drop. I was excited to participate in the festivities, but I kept on having this heavy feeling creep in. I tried to ignore it, thinking it was just my fear of leaving my kids home or the drunk drivers on the road. As hard as I tried, it just wouldn’t go away. Something was wrong, but I couldn’t put my finger on it. I finally told my family that I wasn’t sure I wanted to go. Something just didn’t feel right. I didn’t know at the time that what I was feeling was a new purpose coming into my life, disguised as a painful and traumatic experience. It was then that the phone rang and our lives changed forever.
My Mother was calling, or at least that is what the caller ID said. It didn’t sound like her and I couldn’t make out any of the words except “Grandma was dead”. She was crying hysterically. I tried to get her to calm down as I truly could not understand what she was saying or why she was so upset. We had talked about grandma dying several times and knew that once she died she would be free from this terrible disease. In many ways, we thought it would be a relief when she finally did pass away, for everyone. So why was my Mother screaming uncontrollably? Well, after several minutes I found out why. My Grandmother did die that morning, but not from Alzheimer’s disease…. she died of hypothermia.
How? Why? Those were the questions that we asked in those initial hours but no one knew the answers. Days and weeks later information was released and the pieces of the puzzle started to paint the picture. It felt as if we were in a nightmare as we learned of the last few hours leading up to Grandmas death. To our best knowledge, grandma walked out of her “secure” Alzheimer’s wing, and out of 2 other sets of doors without anyone noticing her. She walked 6/10 of a mile, in the middle of the night, in 0 degree weather with a silk nightgown on and bare feet. Her body was found 20 feet from the doorstep of someone’s home. These are the facts as we know them. The how’s and why’s remain for many of the family members. I too questioned the why, but soon turned my attention to a different question, ” What could the purpose of this tragedy be?” There had to be a reason. I thought maybe I knew, but I wasn’t quite sure yet. My Grandmother deserved a peaceful death in her bed with her family surrounding her instead of wandering frightened, alone, in the dark, in the frigid night air. That is what my head said. My heart, on the other hand truly felt that there was a bigger picture to this story. I just didn’t understand it yet, because I was in the human place of why? I needed to move to a higher vibration in order to see the higher vision and at that time, I simply wasn’t there yet. So, i continued to ask the question, What could the purpose of this tragedy be?
Several days after my grandmother’s death, I received my answer. My grandma came to me in Spirit form and her presence was as clear to me as my hands are right now on my keyboard. She asked me, no begged me to be HER voice. She wanted me to speak up for those patients who could not. People needed to know about the care facilities and their lack of focused attention, the ratio of caregiver to patients and the disregard for proper training. It was in that moment…in her brief but very powerful visit … that I began to understand the bigger picture. Not only was I to find purpose, but my Grandmother as well. As I mentioned earlier, my Grandmother was an alcoholic most of her life, and because she was not able to be present, she never truly felt like she was living her purpose let alone had one. Yet now, in her death, she did. Her tragic ending would be the emotional voice and conduit that would bring about change. If I could be her VOICE and I could share, then perhaps I could bring about awareness and I could help my Grandmother fulfill HER purpose while simultaneously fulfilling mine. I wanted people to know that in many cases, elder care living facilities are not managed well. I wanted to help educate people about the laws governing care facilities or the lack thereof and what really does take place behind the scenes.
I chose to honor grandma by speaking to the media about the conditions that needed to be changed. I could no longer turn a blind eye to the elder care in our nation, and I didn’t want anyone else to either. My family members and I wrote articles, interviewed patients and care givers and asked A LOT of questions. As we kept the conversation going, more people began to listen. My mom, aunt and I went to the senate hearings in Washington DC on public policy and talked with our senators and our Governor and shared Grandmas story. Most often the first response was empathy for the tragic way in which she died. That empathy inspired them to ask, and to really want to see change come about. It was an amazing experience. And finally, because of my trip to DC, I became a board member of the Alzheimer’s Association and a supporter of The Safe Return Program. If you are unfamiliar with this program, its purpose is to provide 24-hour nationwide emergency response service for individuals with Alzheimer’s who wander away from their physical environment.
In sharing my Grandmother’s story, lives were not only spared but saved. OUR VOICES created public awareness which effectively created change in local laws. My Grandmother is now the unspoken hero in the lives of many. They are the beneficiaries of better quality care, safer physical environments and higher standards for caregivers.
Lesson: My purpose in this experience was to listen clearly, take guided action and use MY voice. By taking action, speaking up and listening to my Grandmother, WE made a difference. Through this experience, I learned what it meant to be authentic and what it felt like to own my power. I understood for the first time that it was time to stop playing it safe. Up to this point, I was a stay at home mom and was quite happy doing that. However, something within me changed. The voice, the student and the teacher awoke in me. I was now ready to consciously live my purpose through, teaching, speaking and sharing. Her death was the catalyst for me to release my fears and to put myself out there…in front of people. I embraced my inner calling…to be who I really am and to use my VOICE. And to this day, I am still using my voice, as a teacher, an author and an inspirational speaker. Grandma’s story does not end here…I tell it quite often in my workshops and speaking engagements. She has been a beautiful teacher to me and I stand in unending appreciation of all we have learned together.
Has Alzheimer’s affected your life? Unfortunately, there are hundreds of stories like our family’s…. even thousands.. AND… we are making a difference. Use your voice my friends.. Speak up… and share your story. Your voice matters!!!!