December 2014: “You’ve got good things for the, for the, for the, the, the, the….” Mom struggles. We’ve just finished a music session with Eric, and she wants to share how it impacted her. She comes close to trapping the right word.
“You’ve got good things for the, for the, for the la, la, long, long, long, longity,” she finally manages. Others wouldn’t have known, but I understand immediately that she means “longevity.” Her attempt at a complex four-syllable word blows me away. For the sake of those I know will listen one day, I ask her to clarify. This is what it sounds like:
Her sense that our work with Eric helps keep her alive moves me to tears. I am so grateful, and I realize this is one of those amazing moments, a gateway to what I call her “clairvoyant intuition.” I grab my iPhone and clamp it into the makeshift DIY tripod I created from instructions on the Internet, and I begin to video our conversation. We talk for about half an hour. Correction: we sit across from each other in the kitchen for half an hour; the actual talk time is ten minutes at most. Mom knows what she wants to say, but extracting the right words from the alphabet soup of Alzheimer’s aphasia takes extraordinary determination on her part. So does practicing patience on mine. But when I do, I’m rewarded with great gifts.
Seemingly from nowhere, and without any prompting from me, Mom says, “You’ve done this thing.”
“What have I done Mom?” I ask.
“You’ve done something to help somebody. You came around to do this thing,” she says. She pauses for a long time. I wait. She processes. “I suppose what you think about really when, when, when, you try to help somebody to do something. I think that that’s a help. That’s a help to somebody. And that helps somebody with something.”
I listen beyond the repetition, and decode meanings as well as first- and third-person mix-ups. Her right hand is suspended about chest high. Her face is a mask of resolve. Mine is literally masked; I’ve got a cold and I’m trying to protect her. More processing. I nod my head. I listen with every fibre of my being. If she looked at me she could see my eyes, but she’s focused on a point somewhere in the space between us. I gaze directly at her. I lean in and love. She searches for words to express her thoughts and tries to build something I will understand. It takes time. Seconds go by. A minute follows. I encourage her with my silence.
“I think that’s a good thing for the person who is trying to help somebody who needs it,” Mom says
“Sometimes I wonder whether I’m doing the right thing Mom,” I say.
“Yeah,” she says. “That’s true. Because it’s it’s it’s it’s a person that’s given you something.” I start to cry. “And this is the thing that’s helpful in this person’s life. You’ve got to know that…” She reaches out and touches my arm.
“I know Mom.” I barely hold it together. She tells me the one in control of her purse strings should help me to help her. “I don’t think that’s going to happen,” I say. “I just keep trying to do my best Mom. And I’m glad it’s a good thing.” Her response is immediate and emphatic. She reaches out and again touches my arm. Her eyes suddenly fix on mine.
“It is a good thing. It is a good thing. The fact is that the person that you’re doing it for is somebody that you’ve got to do something for,” she says.
“I know Mom.” It’s time to go. I’m already late. But we still have a couple of things to share. Watch:
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My Alzheimer's Story 
Oh Susan, that’s so beautiful and you are doing an amazing job logging all these conversations….Loved “they don’t even know what the hell they’re doing” at the end. That is the Patty I remember!…..Makes me cry and laugh.
jc
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Yeah me too 🙂
Thanks for supporting me and thus encouraging me to keep going… ❤
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Again, I’m left speechless so I’m just sending hugs 🙂
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Thanks Mike ❤
I’ve watched part of the replay of your webinar (thought it was great!) and have some ideas 🙂 Talk soon…
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I’ve been reading your blog off and on for the past several months, maybe even a year now. Every time I read a post or see a video of you and your mom, I’m touched. Your courage, kindness, and love never fail to encourage me no matter how down I’m feeling. I’ve meant to comment so many times but I just never felt it was the right time, or maybe I couldn’t find the right words. But now I feel the need to say just how much your posts mean to me. There is such emotion and love in every one of them. Your incredible kindness astounds me, and I hope I can be as kind as you one day. Thank you so much for what you do for your mom and for sharing your stories with us so that we may help and encourage people as you’ve encouraged me and so many others. Your username suits you well – you really are amazing.
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Dear Bethany,
Thank you so much for your heartfelt comment, which came at just the right time. I often ask myself why I am doing all of this writing and filming and recording and if it’s of any use at all, despite the fact that quite a few people leave comments saying how touched they are and how it helps them. Still, I am find myself filled with doubt and uncertainty. Also, I have been fighting many battles on many fronts for a long time and I’m tired.
So, encouragement comes full circle. Your words meant a lot to me today, and I’m so glad you wrote. Thank you.
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Sounds like you need a vacation in a warm and sunny place. Dedicating your energy and create passion to being with your mother is a lot. It is a back and forth, but most giving action and we all need time to take as well. So if you are able, I recommend that you take a mini break for yourself and find a way to nourish you!
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Yes, clearly I need to do something different(ly) and/or recharge – though I’m not sure a warm and sunny place is the answer having lived in one for 18 years! And/or I need something good and positive and re-energizing to happen instead of constant barriers and obstacles. And/or maybe it’s just one of those days, which we all have from time to time no matter what we’re doing in life 🙂
On the positive side, I’ve caught two mice in the last couple of days so I won’t have to listen to the constant scratching in the ceiling and walls at night 🙂 That’s good news!
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Okay, I understand about wanting something other than a beach/tropical vacation. HEre is what I am doing this summer: I am going to Goddess Summer Camp! I have gone several times and it is always a wonderful experience. Not always easy as we go deep inside to find and work with our Wise Woman, but always worth it and always meaningful. Here is a link to information about this powerful women’s retreat: http://www.meganwagner.com/womens-initiation/wise-woman-training/
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Thanks for the great link Heidi ❤ The retreat looks amazing ❤
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Susan, feel free to contact me privately for more information if you are interested. I’m going to attend the retreat this July.
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Thanks Heidi ❤
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Heart to heart. Your mother is there with you and you are capturing the moments so well. What a tribute to you both!
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Thank you Heidi ❤
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It’s Mother’s Day in the UK and Ireland. How fortunate your mother is to have you. You have devoted yourself to making everyday happy for her. Your generosity and courage take my breath away. I know that you feel isolated and lonely at times and what you are doing is SO hard. But please know that there are people all over the world who send you love and blessings every time they read one of your posts. I hope you can feel this in the dark moments. You truly are an inspiration. Thank you for showing us all what love looks like.
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Geraldine, what a wonderful sentiment to wake up to this morning. You’re right, I often feel lonely and isolated and like I’m fighting battles on every front just to stay afloat! On the other hand, I’m really grateful to also discover joy and magic in all of this mess. And I’m so thankful to get comments like yours; they really do keep me going. There’s something about knowing I have touched people’s lives and made a difference that makes me feel I’m fulfilling my purpose. I wish that part wasn’t important to me, but it is. So, thank you right back 🙂 ❤ ❤ ❤
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