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My Alzheimer’s Story

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My story is like so many others, yet so uniquely mine. Like all diseases, you fight it in the beginning, rejecting the diagnosis and believing it will be different for you and your family.  Unlike many families, we did not wait too long before finding mom a safer place to live. The worry of coffee pots and irons left on was enough incentive for us to convince her that a move was a good idea. Of course, there was resistance and the accusations that we were forcing her to do something against her will. It was true…we were. Luckily for us, her first stop to supportive living brought joy, activities and folks just like her to socialize with. As we set up her new apartment with familiar pictures and items from home, she acted like a high school graduate going off to college and getting her own place for the first time. We felt blessed and relieved that we didn’t have to worry anymore. This lasted over two years and the disease remained status quo.  

Overnight, something changed. The staff and doctors were not surprised, “this is how the disease goes,” they would tell us. It is unpredictable and follows a relatively predictable pattern. Here we were, in a new place. After a hospital stay and a tumultuous few days in rehab/observation, we knew she was not going back to her apartment. I slept in a chair by her bed because I was the only one she would trust. My brother stepped in for my shower and sleep breaks, but this was not a long term plan. Having no money left to afford a more aesthetically pleasing environment and a private room, skilled nursing was going to be her new home. Again, once she stabilized and we set up her ‘half of the room’, she was okay, not great.  Being completely ambulatory at this point, she was in a secure unit which meant locked in, and she knew it.

As the daughter of a strong willed woman, nothing can stir more guilt that locking your mom up. There were days she would yell at me, and days she did not want to see me at all. I would do her laundry every week, convincing myself that this was going to preserve the color and keep her clothes looking their best.  It was guilt and I know now, that it was okay, we all have to cope in our own way with this thing.

Elsie lived there for over six years. She received loving care from nurses and CNA’s who will forever be my angels! They did things I couldn’t, they understood the world she lived in and helped me come and go with confidence that she was in good hands. It was far from perfect and I wan’t always pleased with the facility, but life is just like that…I’m not always pleased about many things.

I learned so much through the years of Alzheimer’s. I learned how to accept, how to be more patient, with others and myself.  I learned how to be grateful for small things and that there are angels among us!

On August 28, 2020, Elsie went home to be with Jesus. We lost her during the pandemic, not to Covid-19, but most certainly because of it. I believe her will left her as she could not really see or hear her caregivers any longer. FaceTime was not a good replacement for our visits, she never really connected with us again. We were again blessed that when she went on Hospice there were no cases in her wing and we were able to be with her. The morning she left was peaceful and one of the most sacred days of my life. She held me on the day I came into this world and I was privileged to hold her on the day she left.

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