Things change. And change is almost always difficult. And learning is sometimes rough, as well. But when you get to the other side, there can be joy. Growth is amazing. And change can bring new light to your life.
“The light shines in the darkness, and the darkness has not overcome it.” John 1:5
Our journey has been tough (and it is far from over or settled) but I brought some of the practices of my faith into dealing with this horrific disease, Alzheimer’s. And they seem to work for bringing centering and peace, even when faith is not the ultimate object or goal. Silence and a quiet environment, and a steady environment, has made so much of a positive difference. Just like silence is where we seek the wisdom of God in our lives, it can sometimes completely center us in all our life’s aspects.
I was being fed stories about how busy people are, etc. from several people I trusted. But what I found, in reality, was the busy-ness was to avoid much of life. When someone has Alzheimer’s, their ability to participate in life is greatly diminished. They think they are participating, but they are truly observing. Moving about and going from event to event gives them a sense of involvement, but it is just keeping them busy. As I researched the schedule at the senior complex where my mom used to live, there was something every hour, all day long. So when my mom came to live in our home, she complained, and was angry, about being bored. Nothing to do. Nowhere to go. To entertainment to be had. She forgot how to entertain, and busy, herself. It was all about playing Wii bowling. About going to this event or that event. After days of explosions and anger, I just decided enough was enough. We stopped. We stayed home. We stayed quiet.
“My heart is not proud, Lord, my eyes are not haughty; I do not concern myself with great matters or things too wonderful for me. But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content.” Psalm 131:1-2
One of the things I am learning (through this Alzheimer’s class I am taking online) is that as a caregiver, it is my goal and my purpose to bring peace and contentment to my mom. And lately, contentment has been so apparent. And it is wonderful to see. Wonderful to be around. And it came through stopping this “busy-ness” and allowing a calm to take over. And there has been an emergence of peace, gentleness, and far less confusion. And so much more apparent, there is genuine love. That has not, yet, been forgotten.
Alzheimer’s is fatal. As one of our teachers said, “Life is fatal.” It is. We all die. But most of us pass away with ourselves intact. Alzheimer’s destroys the brain, bit by bit, And each day that passes, more is irrevocably lost. The patient becomes disintegrated, mentally, and is no longer rationally intact. It makes each day unique unto itself. Because not only is each day unique, due of the progression of this horrific disease, each moment is unique. What works at 9am may be totally wrong at 10am. And so it is a tight-rope walk each day. But the explosions and the confusion, and the underlying agitation, those are less and less. Her memories of what she used to do and where she used to live, the people she hung out with, those are fading. She is even using incorrect terms when referring to them. And she is not less because of it, nor is she missing it, nor is she angry about moving. She adores her bed and her room. Each night, she sighs and comments on how much she loves that bed! It has become a source of joy for me. We have had frank discussions about her end-of-life choices and have had some incredibly peaceful discussions about how she wants to die. It melted my heart. We communicated well and we found commonality and peace with her choices. I cling to those moments.
Patients with Alzheimer’s are aching. Because their world is contracting and they find it harder and harder to connect with people each and every day. They get frustrated and so very confused. And taking care of them infects the lives of their caregivers. There are days when I feel like I adopted a 3-year-old. And there are days when I just want to go back to bed. I have stacks of paperwork I am trying to get through, but will someday have to tackle. And I am cooking and cleaning and doing laundry for 4 now. I am learning how to work with someone who doesn’t fully understand the moment and it is good, stretching “muscles” I did not know I had not used in awhile. Caregivers find they are tugged, stretched, and pulled in ways they did not know they could survive, let alone thrive. I am far more tired these days, but I am not wasting many of them! I am too busy!
The joy I see each night, and the hugs I get every evening, complete with profuse thanks for all we are doing for her, well, that pretty much makes it all worthwhile. I haven’t got this cornered and I truly don’t have all the answers, but I do know God is blessing our lives. He is helping keep me quiet and centered. And I enjoy feeling the peace seep into in our quiet mornings, and the contentment I feel in our warm, slow, and quiet evenings. I fall into bed, exhausted each night. Tonight is no different. Tomorrow will be a new day in almost every way. But I will greet the day with hot coffee, and with gratitude for this incredible journey…