Today I mourn the loss of my mom.
Yet, she is still here with me. I watch her smile and nod her head – her contribution to most conversations. I asked her what she likes about the meal she just ate but I already know the answer. “Everything,” she responds. It’s an acceptable answer that serves as a front to her lack of recollection.
The caring, sweet, vibrant woman who loved me is slipping away.
I don’t understand this new person residing in her body yet. How do you deal with a person who has no short-term memory? All she wants is to return home where her memories reside- where routines are familiar. It is what she knows. Alzheimer’s disease has destroyed her ability to retain the present. No amount of explaining or reasoning can cause her to understand why we had to move her. Or even remember how she got to her new place. I pray that in time she will be able to form new connections and memories.
“But how long Lord?” I ask. “How long do I stay in order for her to adjust? And will it even happen?”
Eleven days ago my brother, sister and I took away her keys and with gentle pressure, explained that she now needed to also move out of her home. She took the news surprisingly well. Looking back, I see now that she simply did not comprehend what we were saying and in her trusting way, went along with it. Now, every day she asks me “how did I get here and why am I even here?” And she wonders why some of her furniture moved with her? It belongs in her home where she believes she will return. In her thinking, she is just on vacation.
Sitting over lunch with my sister today, we simply look at each other and cry.
I am glad for siblings especially at a time like this. The table has turned. We must now become her guardians – her protectors – not her children. Instead, we have to firmly set boundaries around her. Like a child, she does not understand and pushes on these boundaries every day. But we have to hold firm. And it hurts to do so.
I long to make her happy—just like a mother longs to give her child good things. Yet I cannot give her what she so desperately desires – to return home to what she can remember. I wish it were not so. She cannot understand why. She does not comprehend or remember the most recent history in her home – her near car collisions, taking medicines multiple times, leaving perishable food out overnight and still trying to eat them the next day.
She does not remember what she does not remember.
“I had some memory problems before but now I my memory is good again,” she tells her visitors today. They say nothing. I feel the awkward silence in the air. They have just listened to the same lines over and over. They know differently.
“You shouldn’t worry about me. I am fine,” she tells me. “Go home to your family where you belong.” I want to scream at her and say, “how can I leave when you can’t even remember when or if you have taken your medications five minutes after you have swallowed them?”
“How can I leave when I know you will talk you autistic son into taking you back home as soon as I am gone?”
“How can I leave when I see you fading away and I want to capture every moment I can before you disappear entirely?”
“How can I leave when I so desperately want you to remember me. Always. If I leave, will you remember me when I return?”
This evening, the mom I recognize returns for a while.
“Why are you sad Ellen?” she says actually calling me by name. “Does it have to do with how I treated you earlier? I am really, really sorry.”
“It’s OK mom,” I say. And it is. She has just handed me a precious gift – a view into her heart that I long for and love. And it’s enough to keep me going. I am grateful for these moments – however small – times when I can still connect with her and she with me.
But the moment ends.
“I can’t find my medicines,” she cries out five minutes later. “Where are they?”
“You took them a bit ago,” I tell her. “I will bring them to you again tomorrow,” I assure her.
“Now I know,” she says. “Now I know and I won’t forget again.”
But it’s the same conversation each night. And it breaks my heart because the reality of what is happening is beginning to sink in.
She does not remember what she does not remember.
And soon it may be me that she may not remember.
I booked a ticket to return home in a few days. I have much to do yet before it is even safe to leave- setting up medicine assistance – establishing new routines . I am excited to see my own family but it will be very hard to leave. I don’t want to miss out on these gifts -the windows of time that still open up and reveal the mom I know so well.
Her heart, which the Lord inhabited long ago and has molded over the years, remains tender and touched by Him. She may not comprehend or remember what takes place around her but the Lord remains her everlasting light within. In this present darkness – in the grip of this ugly disease – He holds her tightly. She is navigating her life from a dark confusing state but He is the light of her life that steadies her.
She is fading away yet still very much alive. Thus others must guide her and illuminate her darkness, leveling out the rough places. That is what my time with her is all about. Bringing light to her physical steps and reminding her of the One who lights up her inner life – her heart.
That’s what family is for – to be light for each other as we travel through the difficult seasons of life.
These seasons pass quickly – just like the season of raising children. One moment I sob uncontrollably and the next moment I am flooded with the gratitude that I am given the gift to do this for my mom. My mom may be angry at my decisions for her, just like kids are with their parents, but she trusts me because we have a strong heart-to-heart connection. She knows I not only love her but I know her and understand her.
It is through loving connections that our influence and guidance is trusted, and I am grateful I have that connection with my mom, regardless of how deeply it is buried.
And so, now I return to my own children and grandchildren—to the ones my heart yearns for and to the ones who may someday do the same for me. But even as I go, I desperately want to return to mom all that I can as long as she is still here – to love her and reassure her that things will be OK and to point her daily to her Morning Star.