The neurologist said “I am sorry there is nothing more we can do for her”. My head was spinning what did they mean, fix this! I had been grieving my Mother for the last 6 years with her dementia, or so I thought, but none of that seemed to mean anything right now. Nothing prepared me for this overwhelming moment in time. I never thought I would be here in this place without my big brother to support each other through this. It was happening and here I was.
I have wonderful support but my core family, my Dad and my brother were gone. It was just Mom and me and somehow I had to figure this out. My Mom was not able to speak and they were not sure if she could hear or understand at the moment. My world was so unbalanced I found it hard to breath. The reality is that you have to do what you have to do, and my Mom would expect nothing less from me so I faced it even though I felt so lost. Nothing mattered except “there was nothing more they could do.” That sentence was haunting me.
They suggested keeping her at University Hospital (one of the largest hospitals in our area). I asked if it was possible to move her to our small town hospital, as I felt it would be better for our family. Since they had determined they could do nothing more, the idea was to keep her as comfortable as possible. The specialist said he would have to review as it was not an option they had considered. After what seemed like hours of red tape and paperwork (which of course is all completely necessary) they agreed to the idea, she was in the ambulance and we were off.
I was so thankful that we could settle in our wonderful local hospital. She had volunteered at this hospital for many years and so it gave us comfort and at that point in time, that was all that mattered. The palliative room was wonderful and we had the privacy that we needed. The days seemed to be a blur for us. She was in and out of consciousness and I would have conversations with her. Each moment was priceless. She was not able to respond but her eyes told me she knew what I was saying so we carried on. With her true strength and conviction she fought to get better. She began shaking her head answering yes and no questions! We tried to remain cautiously optimistic but it was quite exciting to see the changes. On the second day of her wellness she was able to move her right leg and arm again. It was truly incredible, the nursing staff were as amazed at what was happening as we were. After three days they moved her from the palliative room to a regular room. The doctor felt that she was showing enough signs of improvement that this move would be acceptable. They put her on intravenous since she had not had any nutrients for five days.
For the next two days she showed signs of improvement and it was wonderful. We tried to take things one step at a time. She was not responding the same as she had and then things took a turn for the worse. You try not to be hopeful because you have been told there is nothing they can do but you have hope and then this sends you on an emotional roller coaster.
It seemed that the world stopped when the nursing staff came in to her room and suggested we move her back to the palliative room. We moved back and I spent many hours at her bedside. I sang to her so many of the songs that we had sung together for years. She especially loved the old hymns and while her eyes were closed most of the time she would occasionally tap her hand to the beat of the music. This told me she could hear me so I kept on talking and singing. If you are a person of faith then you understand when I say there was a peace in that room during those days. That peace gave us all strength to face the unknown.
In our fast paced lives we don’t really know what it’s like to just stop and “be”. Just live in the very moment that you are in not knowing how many more of them you would have. This is where we were. I held her hand and told her stories of when my brother and I were kids and stories of her grandchildren. The stories of the grandchildren brought a glow to her. As they came in and out of the room she would hear their voices and she would smile. She squeezed my hand and I knew she was telling me that things would be all right. We all shared many stories and the love in the room was overflowing. Mom and I were blessed to have some time alone and we talked about her journey. While I did not want her to go I said that we would take care of one another. I wondered in my soul how it would ever be all right but I knew that she deserved the peace.
On December 8, 2017 at 12:30 a.m. my Mother passed. While we knew it was coming it was devastating. Learning how to live without her physical presence was something I could not even begin to imagine, but that is what we have to do.
While this part of my Alzheimer journey has come to an end it does not mean that our family’s connection to this disease will end. We will continue to support research and learn about this disease as it continues to rise in numbers throughout this world. We will be part of helping to make a difference and reach out in any way we can. It is what she would want us to do. I hope that my journey has given you something to consider as you travel your own road with this disease. There are so many different ways it affects people and you just can’t take one moment for granted. We were lucky that Mom knew who we were until the end. Not everyone is that blessed. We just tried to look at each step of the journey and find the joy and love there, because it always was. Gratitude gives us strength and we are so very grateful for all that our wonderful mother and grandmother brought to our lives, with and without Alzheimer’s.
Thank you for sharing this journey with me and I send blessings to you as you travel your path.
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