Privilege Blog

Adventures With A Parent Who Has Alzheimer’s, Or, Saturday Morning at 10:04am

I visited my mom this week. We had an adventure.

These days she can hardly talk. When she’s having what I can only call delusional memories, talking to someone who isn’t there, she’ll say more than usual. At other times she will remember social phrases, “I should think so,” “Marvelous!”  But if you ask her a question about the here and now most often she responds with one or two words, and then devolves into what I will call gibberish.

When you have a parent with Alzheimer’s you use words that used to feel bad but have become OK.

On Tuesday when I greeted her she looked up and said, “Darling!” She couldn’t really get much else out, at least nothing that made linear sense, but I gathered from language fragments that she wanted to “do something.” So the care managers helped me get her into her wheelchair – she rarely walks  – and off we went.

First we went into the residence’s little enclosed garden. She ignored the various pots of flowers and gestured with certainty towards the iron exit gate. I pushed her close, she took hold of it and shook. “It’s locked, Mom,” I said.  “But I know another way to get out.” So we went through the front door to the parking lot. I asked her, “Which way?” She waved towards the sidewalk, away.

Her residence is on a main street. Cars go by really fast. At the corner I asked her again, “Which way?” She gestured forward, we turned, went into another parking lot, this one surrounded by rosebushes. We came back out. I kept asking if this was good. She would say “Yes,” another word she hasn’t lost.

She said “No” to going home. So I asked her again, “Which way?” This time she pointed across the main street. It’s not really pointing, I need to give you a better picture, she makes a sort of chopping gesture with her hand. When the light changed we charged, me veritably running to cross all six lanes in time.

It seemed she wanted to keep going. So I pushed her into the neighborhood, down the sidewalk, past the houses, and the trees. A young boy passed, wearing his school uniform, coming home. She noticed but she wanted to keep on.

Then I realized she was raising her eyes as I walked. The trees in the neighborhood were quite tall – she was looking at an evergreen on the far corner. “That’s a tree Mom,” I said. “See how it’s green? See how the sky is blue?” These days I have to lean forward over her shoulder so she can hear me. She was looking with an air of such intent, such clear desire to know.

“I can’t see,” she said. “I know you don’t see well any more,” I said. I wanted to acknowledge her reality. One of her cataract lenses got loosened recently, we haven’t sent her for repair, fearing surgery would do more harm than good. I turned the wheelchair so she could see down the street, further. An even taller evergreen stood outlined against the sky. She said, and I do not remember precisely, something like, “That one I know.”

So I kept pushing, until halfway down the block we came to a driveway shaded by three large trees. Twined trunks, large low dense canopies. We just stood there for a while. Possessed by the idea that the universe was talking to me I told her to look right up, I told her the trees loved her, that she was beautiful. We all say that a lot, she seems glad to hear it.

Then I asked if we could go home. She assented, I think.

Just as we were about to cross back over the large main street she said, “I want..” I figured she meant something to eat or drink. I think her memory has retained the fact that I am the one who takes her out – even though I’ve only done it a handful of times – and that when I do I get her food.

So we stopped at a smoothie place. She said, “I don’t think so.” We kept going. Then the sidewalk got really bumpy and she said, “I don’t like this.” I cannot stress to you how extraordinary this level of communication felt. As though the sky I’d explained as simply blue was cracking open.

So I wheeled her into a nearby bodega and bought her a Twix ice cream bar. She liked it so much she said, and by now I am possibly inventing entire paragraphs, or maybe I myself said some part of this, “This is delicious. If we want, we can COME BACK.”

I know I then said, “If you want another one you can have it. No limits.” Because that’s what I was trying to do, to give her a day without limits.

I got her another Twix. I talked to the guy behind the counter, young Middle Eastern guy, he was so friendly. Homeless guy outside was friendly too. I bought a Lotto ticket for the hell of it. I will tell you now I did not win the drawing.

Meanwhile Mom is just cramming this Twix bar into her mouth. But I haven’t taken off all the wrapping. So I see that if she takes one more bite she’s going to eat paper.

Also by now I am hot and sweaty. It’s a warm day, the wheelchair is not light, I am almost 62 years old, I forgot to wear a hat. I try to take away the ice cream. She says, “NO!” I think, “I meant to give her a day with no limits, but I have also done all that I can and I’m going to get out while I am still in good humor.” I manage to peel back the paper on the bar without her biting me. This takes some effort. I stand over her waiting to take the melted ice cream and caramel in its crumpled wrapper from her fingers. It’s oozing. I seize my moment, I throw it in the garbage.

She doesn’t object, we’re on a roll. We go home. It is now her home.

I am breathing hard as much from exhilaration as exertion. I am not quite sure what has just happened but I am very happy. I feel I have done well by her.

In my mother’s last days in Santa Barbara, when she could still walk and talk (although she’d lost the idea of who I might be a year before), she would sit in the front seat of the car waving her hand at trees, saying, “So beautiful.”

Just last weekend my middle sister and I had been talking about a Richard Powers book, The Overstory. It’s about, well, trees. And some people but mostly trees.

I wholly understand all this may have been coincidence. I don’t think it matters. It was a time full of enough meaning that I don’t care who was talking, the universe, Mom, me.

Have a wonderful weekend.

 

102 Responses

    1. @Susan B., So wise. That’s exactly it. Because two people, two beings of any sort, who understand each other and communicate needs and receive care in return, that makes its own meaning.

      No external reference needed.

    2. Aunt Nancy was my “other mother” when I was attending UCSC. She taught me the value of connection, why champagne should be served with a turkey dinner, and how to be unfailingly gracious. I’m so glad for this miraculous outing. Cousin love forever!

  8. This made me cry. Thank you. It reminded me viscerally of the quintessence of what matters, here, now, always, as embodied humans.

    1. @Dinny, Thank you. And “embodied humans,” such a phrase, exactly that. All our senses and all our memories and all our feelings and all our thoughts – in bodies.

  9. Having just returned 48 hours ago from hiking Sequoia/Kings Canyon amongst those crazy-big trees, I honor this coincidence.
    Impermanence may be a sad fact, but universal synchronicity, your prose, and ancient monarch trees leave me awestruck.

  13. I remember taking my mother on similar wheelchair excursions. It’s so painfull and beautiful at the same time.
    Thank you….
    Ali

    1. @Ali, I remember too. How I wanted to somehow squeeze words, comments, emotion from my mother. She loved trees. I tried so hard. I miss her.

    2. @Ali, It is painful and beautiful all at once – this time the beauty totally won:). Other days it’s the pain. And yes, you just want to elicit something, something that acknowledges you are there, and then even better, something that might indicate you’ve made things better.

  14. What a loving daughter you are to give your mother these times. I haven’t been through such as this and can only imagine the difficulty. Thanks for sharing your journey with your mom.

  15. Lisa

    Surely we are in this life together-near or far. The human experience is so personal yet universal.

  16. Lisa, my mom had dementia, and I totally get the experience you had with yours. Beautifully written, and I think it helps all of us understand this disease whether or not we have experienced it first hand. You are a good and caring daughter. Blessings to you and your mom.

  17. Been there.

    Done that.

    And bought ALL the tee shirts. :)

    She died almost 3 years ago.

    I remember everything we did together.

    She was incredible.

  20. In the midst of all the angst and sadness in our consciousness right now, you write this. So poignant, so exquisite, so resonant. Thank you. How lovely that you continue to create memories with your mom.

    1. @Cynthia, Thank you. I admit that I thought a little bit about women of her generation, women of my generation, how we are shaped by society and how we break free sometimes. But this wasn’t the time for that discussion. Another day. xoxox.

  21. You write with compassion and self-awareness. My father said, “A man should have a daughter”. I think he was right.

    Luci

  22. Lisa you are a devoted and loving daughter – at a time your mother needs you most. This bittersweet story will be a great comfort to you in the years ahead.
    A day without limits – what a lovely gift to your mother.

    1. @Audrie, I find I come to love something and someone once I care for them. As though the act of taking care itself creates love. Thank you.

  24. Aahhh! Just beautifully written, Lisa. You capture perfectly the sensory experience of seeing things through your mother’s mind. My father suffered from Alzheimers. A vivid memory for me of that time was his awe of the trees along the road. There were so many of them, he said. As his disease worsened, the simplest little things of nature created joy for him: a leaf on the ground, birds, a neighbor’s cat. Thank you for capturing a special time in my life. You DID do well by your mother that day.

    1. @Ann Fulton, Thank you. You’ve been here then. I love the image of finding joy in a leaf on the ground.

      Mom’s first place was out in the hills, with large pretty gardens. Sadly the staff did not have real expertise in dementia care. Where she is now, the staff is wonderful. But we gave up space and trees. So I try, when she seems up for it, to take her out and show her more world. xoxox.

  26. Oh I love this so much…we visit my husband’s mom who also has Alzheimer’s and she is 100! We don’t take her out anymore and her decline is hard to watch but we accept it. Your day of joy is so beautiful and emotionally moving…those wee glimpse of our moms are so very precious.
    XO

  27. My mother had vascular dementia and quite soon there were not really any good days nor was I that good a daughter . Perhaps connected facts . I am so impressed with your love and patience ! It’s good to know things can still be like that in this life .

    1. @Rukshana Afia, It’s so hard when you have day after day of no response, or anxious and agitated response. Also I only see my mom twice a week. I can come with all possible capacity available.

  31. I only had time to read your post, will read comments later, but I have to say that your writing is magnificent.

  33. Oh, this both broke my heart and thought how lucky you mom is to have you. Beautifully and tenderly written. Thank you

  34. Those moments are priceless! I thought we had lost Mom knowing us, then in the last year she would really brighten up when we came in. In a way it seems selfish to want her to remember me, but it was lovely to see her happy. My mom died on Sept 7 after living 10 yrs with Alzheimer’s. After planning for several months and being together for 26 yrs to the day, my husband and I finally got married Sept 15 surrounded by family, friends and nature just before sunset. Can’t help thinking Mom had something to do with the perfect day. The grieving was done slowly for many yrs so when she passed it was not a total shock, and we were lucky to talk to her until she took her last breath. I hope you don’t mind me sharing this with you. I am 61 and have enjoyed your blog very much, especially when you shared your experience of marrying late in life and your mom stories. Life is never all good even when happy and it’s not all bad even when sad. It’s a messy mix-up of tears and laughter followed by things falling into place, eventually. Enjoy!

    1. @Terri, Thank you so much for your comment, and how extraordinary that you married with that timing. Lovely. I can imagine I too would feel she was giving me the weather as a present.

      I don’t think it’s selfish to want her to remember you – I heard she said my name the other day, it made me so happy. It is a way to make the slow grieving and also the hard work and days that are nothing but sad, feel better.

  36. You’ve translated this small emotional triumph into such moving prose. It’s a gift you have. Thank you for sharing your experience. The little things count.

  37. Sometimes what is left behind after what is taken from us with Alzheimers is not lesser – it is simply distilled. A fragrance left in the bottle when the perfume is used up. Lovely writing, Lisa.

  38. What an absolutely wonderful essay. So vivid and heartfelt that we readers are right there with you, having an extraordinary day without limits with you and your mom. It was clearly a special day of connection, and I have no doubt the two of you, and the trees, were all communicating on a spiritual as well as the physical plane.

    You seized the moment, maximized it, and inhabited it completely; so did she. What a gift. Just lovely. Sending hugs to you on the journey.

    1. @Alexandra Halsey, Thank you. It was exactly that, trying to inhabit the moment, even though the moment felt like Alice Through The Looking Glass, a bit. And hugs in return to you.

  39. I’m a stoic in time of pain and suffering but can wept bucket of tears when touched. My mother and father were very much in my mind while reading your post. You will come back to these days long after you dear mother is no longer with you. You are a beautiful, thoughtful and judicious writer. A privilege to read your writing!

  40. Hello Lisa, Photographs symbolizing the high spots or the ideal in life always show someone on a mountain peak or otherwise in some scene of natural grandeur, but the memories that mean the most to me have been these simple moments of human connection. As has been pointed out, patients often are more aware than we think, even if outwardly unresponsive. I am sure that this special day meant as much to your mother as it did to you.
    –Jim

    1. @Parnassus, Thank you. I am thinking now of course of Chinese mountain drawings/painting/prints. I wonder if there is anything, anywhere, showing a daughter caring for an aging and debilitated mother.

  41. Greetings from Mayo in the West of Ireland. What a beautiful piece. My Mum died in March aged 94. She didn’t have Alzheimer’s but mentally she came and went a lot in the last year of her life. I visited almost daily, and I completely understand your excitement when a rare period of clarity and lucidity illuminates a visit. To be treasured! Now that she is gone, it’s those visits I remember, not all the ones where she didn’t seem to know that I was there. It’s hard to see your Mum drift away. I wish you resilience as you journey through this difficult life stage, and much love to your Mum.

  42. Beautiful. I love that you just went with it, that took courage. Now you have that day and you’ll never forget it. Sending love you and your Mom. xx

  43. Thank you, Lisa. I needed this reminder. My mother-in-law has dementia, and it sometimes feels like there are so many limits placed on her and us because of it….I will take your ” no limits” phrase as my guide for our next visit.

  47. Lisa,

    Keep up those adventures and excursions with your mother. Ice cream was the only food my father would accept in the last month or so, so his caregivers and I made a big deal out of it. His eyes lit up and he smiled, and would tease the caregivers about how his serving size was too small. His personality was, fortunately, all sweetness and he was so appreciative of everyone. In the end, kindness, sweetness and thankfulness are my lasting memories of him, and that in itself is a great gift.

    Best wishes as you continue this journey. It will possibly be the most cherished one.

  48. Lisa,

    You are a beautiful writer. I see your Mom so clearly in this story, you too.

    Julia

  50. You capture so much in this post. My heartfelt thanks to you for sharing your personal story and experience. Aging and illness in combination, come to each and everyone of us and this journey is at best often trying. Relationship changing as roles shift. The support, love and understanding you have for your mother is truly heartwarming. You are a remarkably strong person. Most impressive. I understand the journey, having supported a relative through hospice to the last days of life.

  52. I can hear her voice saying “Marvelous!” It was a word she used. Thanks for this portrait.

  53. This beautiful portrait of your mother is inexpressibly moving. I love the image of her shaking the iron bars of the gate, and you finding another way out for her. That really is what you are doing: finding ways to let Nancy be Nancy, to experience the world again on her own terms, to respond to beauty and love in whatever ways may be available to her now.

    When I first knew your mother, she was truly in “the lovely April of her prime” (to quote a Shakespeare sonnet); thank you for finding the beauty in her winter and sharing it with us.

  54. “Fortunate burden” I will remember that phrase. It’s perfect.

    My mother is so grateful to us for taking her to doctor’s appointments. Grateful! For such a small effort on our part.

    My mother-in-law is in the same space as your mother. Perhaps a little farther along on her journey.

  58. My own mother, now 90, is sharp as a tack but physically very frail and there is nothing to be done for her to help her, in reality. Sometimes, just looking at her, so happy if I am there to take care by cooking and doing little things, rends my heart. Sometimes, when she is bitter and angry and negative, I want to yell. My mother-in-law, in her 80s, has moderate Alzheimer’s and is physically very fit. Spending an hour with her at the care home where we have moved her so that she can be nearer us is like falling down the rabbit hole. Having seen both versions of old age rather clears the mind and helps to establish priorities. I don’t want either version, to be frank, but would opt for clear brain and diminishing faculties otherwise. I genuinely believe that any little thing we can do at this stage is worth the effort and a two Twix afternoon sounds like a good way to spend a warm day. Fine work.

  60. Thank you for this. My mother is at a less advanced stage of Alzheimer’s where she has just started forgetting who I am. Thanks for the encouragement to hold on to the connection.

Comments are closed.

© 2023 Lisa Carnochan | Sitemap | Privacy Policy | Contact

Instagram