I was happy to find Mom semi-awake when I arrived.
It was the first time in about a week that she’d not been dead to the world when I got there. My visits had been confined to between one and three except on Tuesday when my slot was 2:30 p.m. to 4:30 p.m.. No doubt the choice of hours was deliberate; Mom usually napped in the afternoons. Cruel rules to punish me for my advocacy.
I would not be deterred. When I found her asleep, I sat beside her and read while she slumbered in a recliner inches away. Sometimes I held her hand. I whispered her name every now and then to see if she might waken. Mostly she didn’t. Several days might go by with us unable to speak because she was asleep.
I was angry and frustrated by the prison bars that held us both hostage for no good reason. I spat poetry and licked my wounds. I wrote blog posts and more poetry and celebrated stolen moments when they sneaked around a corner.
But that day, August 4, 2015, Mom was sufficiently roused to go downstairs for tea. The previous few days had been especially painful, and I was thankful she was awake. We took the elevator to the ground floor and then, as we rolled down the hall, she made an intuitive observation as she sometimes did despite her dementia, or perhaps because of it.
“You had a bad thing there,” she said.
“I did,” I agreed as we entered the drawing room.
“Okay dear, well I’ll tell them you had some de de de de deficit.” She was breathless by the time she got to the end of the sentence, and I wasn’t quite sure I’d understood her correctly.
“Pardon me?” I asked for clarification.
“I’ll tell them you had some deficit,” she repeated, this time without stuttering.
“Yeah, I’m having some deficit alright,” I confirmed. “How are you doing though? How are you feeling?”
“I’m fine.” She remained in her wheelchair. I sat down on the sofa. Our knees touched. We held hands and chitchatted in “dementia speak.” Every now and again Mom patted my arm.
“Love taps are wonderful,” I said when she did.
“They are. They are mummy,” she said. She was right. They were.
“I’ve missed you,” I said. “I came yesterday, but you were asleep. And the day before I couldn’t come because I played in a golf tournament and I was terrible Mom, I had nines and eights–”
“Oh my goodness. Well anyway, la la la la la la let’s say you had a had a had a had a good a better one a better one than the one–“
I burst out laughing. “Yeah Mom. Let’s lie! Let’s lie and say I had a better game than I did.”
Like me, Mom was a glass half full kind of person. She whacked the back of my hand furiously in encouragement.
“I love you Mom,” I tasted the softness in my voice. It was like warm caramel.
“I love you too. And I feel badly about…” Her voice trailed off, but she looked right at me. Her eyes were clear. She was fully awake, alert and aware in the moment.
“About what Mom?”
“About everything that happened,” she was unequivocal.
“Me too Mom.” My voice cracked. My eyes began to fill. How did she know these things?
“What can we do?” She posed a rhetorical question.
“Nothing,” I said.
“We can’t do anything about things that are playing…that are playing…ba ba ba ba bad things that are playing things about ourselves…you know.” She fought Alzheimer’s aphasia as she stumbled through her simple explanation of destiny and life. Her voice splintered and her eyes moistened. She tapped my hand more gently.
“But it’s a ga ga ga ga good good good good good good good good good good good good come come come come to mummy anyway.” Boom. Straight to my heart. Tears streamed down my face. I let them flow.
“Come to mummy anyway. It’s a a ga ga ga ga good good good good thing. Yeah. It’s a good thing.”
August 4, 2015
My Alzheimer's Story 
Susan,
My heart aches and my tears flow with you.
Michael
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❤
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reading with tears flowing down my face.
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yes, the intensity and privilege were deeply moving in the moment. i tried my best to hold space for the both of us… i’m grateful to be able to share it. Thanks Heidi ❤
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She knows you’re there and she knows who you are and she loves you…..
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yes, all of that and more ❤ Thanks Jo ❤
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Love endures, even when it is temporarily forgotten. I am so sorry that your visits are so cruelly regulated. I think of you often, though we have never met. My best to you x
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Thanks Jo XOX ❤
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Dear Susan, Sorry to hear that your visits are so regulated! I could come anytime day or night to see Mom. It’s tough because I bet you worry about her during the hours you are not with her.
Just love her up in the visits and the time that you have with her. Be assured that you need to stay healthy for her sake.
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I think it was wonderful that you and your mom had some beautiful moments together today. You both are amazing women.
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Yes it was Lee Anne, and we’ve had many many others as well. I am inspired by my mom every single day. She really and truly is amazing. We are very lucky in so many ways.
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Heartbreaking. Your ability to stay present to everything and every moment is breathtaking and inspirational. And of course you are not only doing this for you and your mum – you are doing this on behalf of every person caring for someone with this cruel disease who can’t do it right now. This is a great service you are doing for humanity and I thank you deeply. You inspire me to pay more attention to what presence really means. I hope you feel the love and support coming from every person who reads your words.
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Oh Geraldine! What a beautiful and moving comment. I am fortunate to have learned so much about this disease, the people who have it, and myself over the past 10 years and particularly over the last four when I’ve been so close to Mom.
Being a care partner has been challenging beyond measure. It is without a doubt the most difficult thing I have ever done, and yet so amazingly rewarding at times, particularly in moments like the one I’ve recounted in this piece. I’m grateful for all the experiences – “good” and “bad” – that I’ve had. The processes and the healing has been extraordinary.
I have come to understand that the way most people currently see this disease is limiting and does a tremendous disservice to the people who have it as well as the people who care for them. A complete paradigm shift is required moving forward.
I’m heartened by your belief that these individual moments of deep connection contribute positively not only to my life and mom’s life, but also to the oceanic “pool of energy” (for lack of a better descriptor LOL) in which we all swim – some of us more easily and successfully than others.
It’s comforting to know there are people like you out there who “get” all of this and who are virtually holding my hand and my heart. Thank you so much. XOX ❤
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Terrific post. It is so hard when you just want to wrap your arms around someone to protect them. I love that I am able to have mom here with me everyday. That may not always be the case, but for today it is wonderful!
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Thanks Rena. Yes it is hard when you want to protect someone and you can’t. It’s horrible to watch someone you love suffer needlessly. You are right to cherish every moment that you have 🙂
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Understand this post.
I am not an clinician, doctor or professor in dementia. I come from a marketing background.
Due to that background I have come up with a reminiscence device that will change people’s lives with the right usage. Look at my early “online business card” website for more info.
I just wanted to bring back the joy of seeing my Mum. Originally thought I was creating the idea for her.
But no – it was for me.
And it works.
If I had had one of my folders in the car with me everytime I visited her, I would have left feeling happier and would certainly have visited her more often.
http://www.rbtyears.co.uk for a look…….
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It looks like a good idea to me Andy. Good luck with it.
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Thank you Susan for sharing these special moments.
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Thank you @Remember me for sharing them with me ❤
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