We sat across from each other knees touching, face to face, hand in hand, heart to heart on a cool day in August 2015. We’d been in that room hundreds of times over the previous three years. We’d talked of strings and things, of less and more, of whether it was rainy or sunny or cloudy or whatever. Social chitchat is among the last skills to go. But this conversation, which had begun here, was deep and meaningful.
“I’m sorry for what’s happened Mom.” I wanted to protect her, but I couldn’t.
“Yeah. I’m sorry too. I’m sorry too, but I’m hoping it’s better th th th th th th th th than…” She couldn’t quite complete her thought.
“Than what Mom?”
“Than than than than than a worse thing that might happen you know.” The worse thing would happen one year, one week, and one day later. I didn’t know that then. Still, I lost it. My face was a flood plain. My breath came in short gasps between tiny sobs.
“Yeah. So I feel better about it all, eh?” she said. I couldn’t answer. She continued. “I hope it I hope it I hope it comes to a better better end,” she said. Tears clung to her lower lids. Tenacious. Just like she was.
“I hope it does too,” I choked.
“Yeah, I hope I hope I hope it does does too,” she repeated. Her voice was husky. The room was quiet except for the beating of our hearts, the scratch of our our voices, the rustle of time’s curtains.
“Yeah,” I said.
“Okay,” she said. We both said okay a lot; even when it wasn’t.
“It seems everything I do to try to help you turns out wrong Mom.” That wasn’t true. But that’s how I felt that day. Helpless. Powerless. Defeated.
“Well I know I know drink out wrong…It’s it’s it’s it’s it’s coming coming coming coming to a better better la la la la la la la la la lovely lovely. Okay dear?” A slight tremble overlay her stutter. I sat there awestruck by this woman who was my mother; this woman who was undaunted by dementia and death.
“Okay. It comes it comes it comes to to to to to to,” her voice trailed off again. She looked directly into my eyes. We both waited. I heard vague sounds from the kitchen down the hall. I don’t know if she heard them too. A gentle breeze snuck through the open window behind me; it kissed the nape of my neck. I shivered.
“To what Mom?” I asked encouraging her to articulate her thoughts despite the aphasia that had taken hold months before and was getting worse by the day. My hands were in hers. She began to squeeze them hard. She seemed unable to summon up any more words. Being momentarily mute didn’t stop her though. Her grip tightened and delivered a message more clearly than anything she might have said.
I wanted to hold on to the feeling of her hands firm and strong and steady around mine. I wanted to remember her ferocity, her desire, her faith. Before she could answer, I spoke again.
“You’re squeezing my hands really hard Mom,” I said so I wouldn’t forget.
“I know I’m squeezing your hands hard. I’m squeezing your hands hard,” she repeated.
“Yeah.” I affirmed, my voice soft and broken.
“But I love the hands anyway,” she said.
“I know you do Mom.”
“Well I’ll get your little hands out of out of out of claw claw claw cloggy anyway.”
I laughed through my tears.
“I hope I do,” she said, and laughed a little too. This was a gift. She rarely laughed any more, a “mask-like face” being one of the side effects of the drugs she was being given. I hated that. I missed her smile and her laugh.
“I hope you do too Mom,” I said.
“Well I hope you get a good good good good good gishy now.” She set her jaw the way she did, and tapped the back of my hand.
“A good what?” I laughed again.
“A little gishy.” She tapped faster. “Gishy gishy gishy mummy mummy mummy,” she said.
“Mummy,” I echoed. I didn’t recall ever calling her mummy; although I may have as a small child. It’s what she called her own mother. She still did sometimes when she spoke of her. “Shall I get us some tea?” I asked.
“Get us some tea,” she replied. “That would be good. I want you to mess me a nice cup of tea.” She started to pat my hand again, fast and furious. “Okay my darling. Okay my sweetheart,” she said. She hadn’t called me darling or sweetheart in quite some time. Pat pat pat pat pat pat….ratatatatat. Ratatatatat. Ratatatatat. My arm was a percussion instrument.
“Would you like a cookie with it?” I knew the answer. But I asked the same question every day anyway.
“A cookie with it?” She looked at me, still holding my hands. “That would be nice my darling. That would be nice.”
And it was.
August 2015
My Alzheimer's Story 
I hope when my own mother gets this bad that I will be able to handle it with the grace that you are handling it. This just broke my heart for you.
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It’s these moments that matter, as you know. And I know that at times the emotions take over and the tears flow. And I am not in the same boat as you but both of our boats are slowly sinking … and free advice is worth what you pay!
I have learned to really be in the here and now with Gregory. The past is gone, the future has not yet arrived, all we really have is today, now! When we have those conversations (more one sided now days) time flies and the past and future dare not show their heads. Later that night, as I am drifting off to sleep is when I realize, WOW, that visit, or that hour, or that exchange was totally in the here and now. If I had thought that at the moment, it would have swept me out of the here and now. So I am with Gregory and who he is NOW, and I hold his hand NOW, and we communicate in what ever way we can NOW and I don’t think too much about it, I just enjoy it. There will be plenty of time to look back Susan, give the HERE and NOW a chance. You’ve been very good to your mom whether things have worked out like you had hoped or not. Your heart is in the right place and mom knows that! HERE and NOW. HERE and NOW. HERE and NOW. It is all we really have! Fondly,
Michael
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Hmmmm. The only way I could be more present in these moments with Mom is if time actually stood still. I am totally “here and now” with her and I don’t know what would have given you the impression otherwise.
I don’t feel our boat is slowly sinking. On the contrary, I feel we are sailing into uncharted waters that will deliver us both to new shores. More like the poem at this post: the loss is in us
For me and Mom the emotions don’t “take over,” we experience them in the moment — the sadness, despair, grief, joy, happiness, hope, or whatever — raw, unfiltered and unbridled. Physical manifestations such as tears, laughter, smiles, frowns, are the immediate expressions of what we feel “here and now” and they are completely spontaneous, heartfelt and real. We are both 100% present.
I express my feelings openly, directly, fully and honestly. I am accustomed to feeling deeply and to sharing my emotions just as I do my thoughts..
This post is one part of a longer conversation which was initiated by Mom when she said: “I felt badly about everything that happened.” I knew what she meant. I went with her flow. Two intertwined lifetimes are being healed in this process that has been ongoing for a decade, maybe more.
I appreciate your good intentions and I thank you for your kind words, but I’m afraid you’ve missed the mark by trying to teach me a lesson I learned long ago ❤
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I am sorry if I offended you. I only reached out with compassion even if off the mark. Perhaps I missed the mark if only because we are in such different situations and seem to approach it from different angles. Perhaps my comments should be kept to myself, which I will in the future. Best wishes with your uncharted adventure. Michael
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Everybody’s experience is their own.
As a general rule I don’t take kindly to advice unless it is solicited. I feel I know very well how to live my life, and I prefer for the most part to learn by my own mistakes and experience. When I feel I need advice or input or additional knowledge, I seek it out.
I might have simply said thank you and ignored the comment, but your take was SO far from where I am I was compelled to respond. That’s me. It doesn’t mean you have to take your ball and bat and go home ;P Though if you wish to, it’s certainly up to you 🙂
Your “reaching out with compassion” felt more to be like you telling me I was not in the HERE and NOW and that I needed to be in the NOW right NOW LOL.
But as I said, it’s nothing personal. Perhaps you weren’t around when I posted this about a years ago:
https://myalzheimersstory.com/2014/07/13/an-open-letter-to-everyone-who-knows-what-i-should-do-before-i-ask-them/
The post struck a chord. Had over 1k shares. It seems I’m not the only one who prefers not to be on the receiving end of unsolicited advice 😛
And while our experiences have lots of commonalities, there are also differences. That’s normal. No harm intended; no harm done.
Thanks for your thoughtful response 🙂
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I love you Suzy. You are beyond perfection. I’ve always admired your ability to know yourself and express your feelings. In fact I cherish that about you. My heart embraces you. Now and always. xoxoxo
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Hey! I feel the same way about you – what a coincidence! XOXO X
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What a wonderful description of being in a heart to heart connection. You were both with each other and it shows. Things rarely turn out the way we plan, but the love still shines through.
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Thanks Heidi. My life has definitely not gone according to plan. But it sure has been interesting… And this last chapter — WOW! ❤
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Thank you for sharing that, Susan! It’s the small moments that can stay written on our hearts forever. I’m so sad for people who don’t visit or focus only on loss–they miss heart connection like this.
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I’m sad for them to Christie 😦
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