"Hi. What is your name?" I said.
That question was greeted with mistrust. But 10 minutes later, I learned the name Doris. Doris has Alzheimer's, a disease which can change a person's personality while at the same time, the person's memory fades, and family and friends learn to live "in the moment," capturing glimpses of the person we know and quite possibly have known for our entire lives.
Today a group from our church spent time with a group of people who are living with Alzheimer's. For me, it was a tough day, because although we caught glimpses of people and their lives, I knew they were glimpses, glimpses which become less frequent as time passes; glimpses I saw in someone I knew since birth, someone who was there when Lori was born; and someone whom I noticed, earlier than other non-family, that something was wrong.
Doris, at first untrusting, grew to trust me. She reminded me of the special person I knew. As Doris' sentences began but then trailed off, as she struggled to find the words. In those moments, I found myself again nodding as if I knew what she was saying or where she was going with her words.
She stood. She didn't want to sit. People would offer her a seat, but what I had first noticed about one of the most important people in my life, when things just didn't seem quite right, was that my offers for her to sit in my car were not really noticed. Eventually she sat. Eventually Doris sat. And neither person seemed to be cognizant that they were being offered a seat. That is, years ago, how I knew something was wrong with a person who cared for me more than anyone except my parents.
Lori also came to the center where people with Alzheimer's live. Lori volunteered for every potential role she could have, volunteering to sing, to lead, to introduce. She was herself, which was great to see, and she found moments with the residents in between times when she led us all through the visit.
And so tonight I found myself sitting on our deck, which is where I often find myself pondering things. I cried at the unfairness of Alzheimer's - how we see the personality of those we love change; how we see memory fade right before our eyes; how we search for moments that bring the person we know back to us, and how those memories fade with time.
And then there were other tears on the deck. They were in a sense tears of joy mixed with sadness. The joy was found in seeing Lori be herself; seeing Lori really step up, volunteer for everything, be in the middle of everything; seeing Lori absolutely love that role.
The tears came because it's been a tough summer for Lori, and in turn, for me. In so many places she has been told she is talented, to please come back because she is naturally gifted. In the midst of this summer of success she was told if she did x, then she would get y. She did x. She did not get y. And as a mother, I can't change promises from other people that are not true. All I can do is feel like someone continues to jab me with a knife, knowing that honesty is so important to me, and knowing I passed this importance to Lori.
Where do we go from here? I honestly don't know. For all the times this summer when Lori has been told she is talented at everything, to keep doing everything, it has all been overshadowed. To see her confidence today made me want to believe she will get over the difficult summer. And yet, it is not that easy. She and I both struggle, and while we want to keep going despite what has happened, it is very difficult.
As I sat on the deck, I wondered where God is in the midst of all of this. We watch and lose our loved ones to things like Alzheimer's; we find joy in success; and we find mystery and hardship in life when it takes unexpected, negative turns. People with Alzheimer's do not get better. We live in the moment with them. Ideally, we taken those moments and bring them to other areas of our lives where perhaps we are struggling. Then sometimes it can be very difficult to find moments of happiness amidst the chaos. We continue to ask God to help as we struggle through various parts of our lives. We continue to ask God to pull us through the difficult parts, where we feel we are being stabbed, and there seems to be no way out. God?
Peace.
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