Sometimes dementia can go like this: a sucky day with Doña Quixote in apogee
I’m in pre-publication euphoria—my book is getting such great attention. I am so happy about this. Why then, did my day-in-the-material-world suck? These are a few of the energy-draining events I remember:
- Olfactorily, I should be fine all day long—this morning I sprayed my underarms with “natural citrus” bathroom spray. The stuff is oily, I discovered—stained my clothes even after I thought I wiped it off. It also made my eyes sting. Don’t know how I could make such a mistake—I don’t even have a spray underarm deodorant—a roll-on, rather. And that is kept in the bathroom cabinet, not on the toilet cistern.
Left, The “natural citrus” bathroom spray lives on the toilet cistern, beneath a sketch that Newton made when he was 2 1/2. Right, My roll-on underarm deodorant lives in the bathroom cabinet on the shelf above my lipsticks.
2. After lunch when we were tidying up, Peter thanked me for putting the plastic stretch-wrap where he would be sure to find it while putting away the food. He was laughing. The wrap was in the fridge.
3. When my friend Debbie came to pick me up, I had her wait in the entrance while I looked for my watch, a silver-gray metallic one. I looked everywhere but could not find it. So I put on an old red plastic one that used to be my only watch and that I still love, but now hardly wear. When Debbie and I got to Kami’s house where other friends were already gathered, Riva remarked on the adornment on my arm. “”So fashionable,” she said, “that you are wearing two watches.” Yes, the metallic watch had been on my arm all the time and I had not noticed it when I put the red one on…
When one watch is not fashionable enough on its own, put on a second one…
I have long noticed that my brain works fine as long as I just stay in my head. It is when I interact with the material world that all the screws pop out. My mind just cannot stay on objects or tasks in the world—my thoughts retreat into my head and then I don’t pay any attention to what I’m doing. Mishaps such as those I described above go on all day long, many in an hour. It just eats up all my psychic energy.
Lezley Saar: Monad Series
Fortunately, their were compensatory events.
- After the underarm spray mishap, I had a little weep—or was it just the citrus oil in my eyes? Peter whisked me off to have a pedicure—something I had been wanting to do for at least ten days, but never got around to because of my inability to stick to a daily schedule.
Tommy at Sky Nails gives me the victory sign after I agreed to have him put on nail polish—an adornment I usually refuse.
2. Our neighbor’s five-year-old daughter, Maya, came over to show me a photo of an amazing find in her back yard: a fairy wing. She ascribed it to the fact that she and my granddaughter Aliya had built a fairy garden in our garden some weeks ago. The garden attracted fairies, and one had shed a wing. We at last had proof that fairies exist! Since a breeze carried off the fairy wing as soon as Maya’s mom had taken the photo, Maya did not have to worry about a wingless fairy, because surely the breeze took the wing back to its owner!
Maya holds the fairy wing in her hands. Maya, left, and Aliya, right, build a fairy garden.
3. I knew, of course, that Peter took a photo of me getting the pedicure. Later that evening he showed me the photo after he had “developed” a kirlian image that had appeared on the picture. Doña Quixote had apparently snuck into the nail salon with me!
A kirlian image reveals Doña Quixote in the seat next to mine at Sky Nails.
I laughed so much that I felt quite tender toward the Doña. I know what she feels like sometimes. Anyway, the two of me made up. She’s not so bad to have around, after all, as long as Peter is here too.
She’s not so bad to have around, after all, as long as Peter is here too, whispering sweet, naughty nothings into my ear.
In addition, I love my nail-polished toes sticking from my first open-toed shoes since my right foot was badly damaged in a car accident twenty-five years ago.
June 6, 2017 @ 11:04 pm
Once again, as I read this to Bruce, I had trouble finishing some sentences since I was laughing so hard. Such a delight to read! Thank you again.
June 7, 2017 @ 9:31 am
Kathy, you are just my best medicine! Your support through all the years squeezes my heart. Thanks so much for letting me know you like my writing–I love it that you read it to Bruce, I’m so honored! xoxox
June 7, 2017 @ 5:37 am
Jou tone lyk te pragtig met die rooi naellak en ek lief jou skoene!
June 7, 2017 @ 9:29 am
Dankie, Rene. Toe ek jonk was het ek altyd probeer vir die “inner beauty.” Nou in my oudag gaan ek vir die oppervlak! Baie liefde vir jou.
June 9, 2017 @ 5:07 am
Oh lol how sneaky is that Doña, she just likes you too much and really quite a stinker playing tricks on you all the time. Just as well you and dear peter have such a sense of humour.
June 10, 2017 @ 9:51 am
I love it that I can blame things on the Doña! As such an amazing visual artist, I can imagine you did (and do) the same through your embroidery of certain demons–it’s just such a great way of putting them outside of you at a distance. At least, that is what Doña Quixote does for me. And you are so perceptive to say that she likes me “too much”–and the flip side, I like her too…No matter how obnoxious, she is still a part of me. It is so wonderful to know you. My warmest fuzzies going your way. xoxox
June 17, 2017 @ 7:25 am
Bless your heart, Gerda.
Thank you for your articulation of what’s increasingly familiar to me. I wonder what your criteria is for the time you cannot take full care of yourself? I hope you outline that in your book. I’m one who doesn’t have the fortunate and supporting family that you do. While able to physically and mentally end my own life, I pray I will do it, and not get past the point of no return!! It is scandalous that the terminal disease of dementia does not count, its not painful enough to warrant a dignified independent self-administered death. Yes it is scary as hell and deeply painful experiencing one’s own identity diminish but does that mean the collective powers-that-be have to deny the fact that some of us have no choice but to accept? Apparently. Wishing you — and others of us in this position — peace and love, from here in Woodstock, NY!
June 24, 2017 @ 9:55 am
Dear Jude, Thank you so much for being in touch–I am so sorry to hear that you are on the same road of dementia. I hope I can in a little way stand in as the support that you are not getting from your family. I feel the same way as you do about not having a simple, dignified access to assisted death when you have dementia. I do talk about this in my book and will soon also do a blog post on what I have learned since writing my book. My thoughts are with you. Please stay in touch. If you are on Facebook, you could “friend” me and be in touch that way as well. So wonderful to have you “out there” to know I am not the only one struggling with this. My warmest love goes your way.
June 18, 2017 @ 9:21 am
I was lucky enough to hear a short part of your Radio interview so I looked up info on you and look forward to reading your book. In your interview you stated you would have to leave the US in order to choose your own death time. I am under the impression that Compassion and Choices helps with options in our country. Thank you for your sharing which is filled with humor and sadness, Joni Nels om
June 24, 2017 @ 9:49 am
Dear Joni, Thansk so much for your kind and supportive response. The problem with any assisted death option in the US is that one has to be “of sound mind,” and when you are in the later stages of dementia you are per definition not in sound mind–and the US does not recognize advance medical directives you have drawn up while you ARE still of sound mind. That’s why I would have to go to another country. I will do a blog post on this soon. Thansk so much for your support and the great questions.
June 24, 2017 @ 9:46 pm
Oh my — how I understand your position, Gerda on the ‘sound mind’ issue. Makes me so angry what we are dealing with, doesn’t qualify. A terminal mental disease not painful enough, eh? Not enough suffering involved? As we speak, this same country is choosing to bring more unwanted children into the world, and keeps sending soldiers into war. This is a blog of mine which I believe helps explain- – through neuroscience – some of the reasons behind why empathy — and thus ethics — are given such short shrift: http://thecoracleproject.blogspot.com
peace and love from Woodstock, NY
June 24, 2017 @ 9:49 pm
Oh my — again, how I understand your position, Gerda on the ‘sound mind’ issue. Makes me so angry what we are dealing with, doesn’t qualify us to decide for ourselves. At the same time this country is choosing to bring more unwanted children into the world, and keeps sending soldiers into war. Here is a blog of mine which I believe helps explain — through neuroscience — some of the reasons behind why empathy — and thus ethics — are given such short shrift: http://thecoracleproject.blogspot.com
peace and love from Woodstock, NY
July 7, 2017 @ 6:59 pm
I love your blog–I particularly enjoy your note on Michael Gazzaniga–his work has been very influential in my understanding of the brain. I will definitely check out your blog in future. Thanks so much again for being in touch.
June 24, 2017 @ 9:53 pm
Apologies I unintentionally posted duplicate responses. I wont do it again! I guess I feel strongly about it and thus I welcome anyone who concurs. Blessings Gerda, and all.
July 7, 2017 @ 7:00 pm
no problem! Let’s keep speaking out…