For NaPoWriMo 2021, Day 6, the prompt is: Go to a book you love. Find a short line that strikes you. Make that line the title of your poem. Write a poem inspired by the line. Then, after you’ve finished, change the title completely.
The line I chose was “Not all those who wander are lost.” from —The Lord of the Rings by J.R.R. Tolkein. This is the poem that resulted. The quote in the last line of the poem is from the title character in Hamlet, by Wm. Shakespeare.
Inside My Sister’s Mind
In my life, sometimes,
when I was farthest from knowing where I was,
I was the closest to finding myself.
Is this how it is
for those who wander
the countless corridors of dementia?
Do they encounter themselves,
again and again,
unstuck from time?
Do our constant attempts to bring them back
hamper their journeys,
start them over again,
frustratingly?
Every road we travel
need not be the same road—straight and chronological.
Dreams teach us that.
Unstick us.
Put our minds in the clouds to float
hors d’oeuvres of memory,
a bite here
and a bite there.
Who are we to try to attempt to force feed an entire meal?
Perhaps dementia is a diet, of sorts, for the mind.
Selecting the most delectable,
forsaking the usual progression.
For our whole lives, we stuff ourselves
in a predictable manner,
from soup to crème brûlée.
Perhaps those lost to us are only lost to us,
but not themselves.
Perhaps their minds, led by a different palate,
enjoy a picnic of pick-and-choose,
spread out over a meadow
on a blanket that obscures
memory
to allow them to enjoy
each morsel
unclogged
by the memory of the last.
“There are more things in heaven and Earth, Horatio,
Than are dreamt of in your philosophy.”
lifelessons - a blog by Judy Dykstra-Brown 
This is wonderful. Having contact with loved ones with dementia can be hard on both parties. I like your viewpoint. Maybe they re fine where they are. “Put our minds in the clouds to float
hors d’oeuvres of memory,: Wonderful description.
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Thanks, Issa. The poem is, however, still a question and a supposition. I wish I knew the answer. My sister went through a year of torment before she seemed to settle into a peaceful placefor the past 7 years. Would I be willing to go through that? My husband went through 24 hours of a similar torment before his death, although he was not suffering from Alzheimer’s. It seemed as though both were reviewing their lives and suffering regrets for certain past actions. Perhaps a swift death is the one to be wished for. I wish I could stop mulling these matters over in my mind and just enjoy what life is left to me. Or perhaps this is just a writer’s fate. Hard to avoid what is in your own mind. The best recourse is to share it. Thanks for sharing this journey with me.
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I understand the questions that fill your mind. Getting it out is beneficial too.
Lauren
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Absolutely. Thanks, Lauren.
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I loved this piece. I did homecare for a while when I was in undergrad. I was asked to take care of a retired surgeon because of my background in the OR. The Doc was unstuck in time frequently, and had the knack of carrying you along with him. I have to say working with him effected my view on what constitutes reality.
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I have wondered so many times what I would do if I knew I was suffering from the first stages of Alzheimer’s. Part of me thinks I would just go with the flow to see what it is really like. Another part, seeing my sister’s life for the past nine years, thinks I would insure that I would never have to go through what she has gone through. But, how can we know?
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I like this piece. You did a beautiful job following the metaphor and providing another perspective of a positive possibility. ❤️
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Thanks, Ali.
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Most people think that people suffering from Alzheimer’s are lost. But as you said, no one but themselves can know what is going through their minds. I like your perspective better. Maybe they are just lost to us, not themselves.
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Exactly. You got the message, Sadje, as always.
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👍
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This is a beautiful, sensitive poem, Judy, but oh, so sad! Nine years is a long time to be out of touch with loved ones!
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Yes..Ninety percent of my sister died years ago… at least from our perspective. Who knows, however, the world she lives in except for her. She seems content.
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Her contentedness is so important — it’s a sad disease, but, as you suggest, perhaps only for the rest of us.
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While reading your poem I knew right away that you were talking about your own quandary of your sisters condition. Who are we to know who or where they are in their own mind~? I had an aunt who was actually living in her childhood and seemed to be happy there. My mother took another path and did not know the people she had known all her life, actually finding fault with them and calling them “that woman” etc. But in both cases they knew me, even if they got me mixed up with my brother. For the most part I see most in a dream land, confused but at peace with their selves. I think this is what you are examining in your poem. Sometime it takes an awful lot of love to be around a person in this condition, and there is also a lot of hurt that comes from it to all concerned except often the least with the person suffering from it.
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Your last statement is what I had decided.. except for that one year when my sister was in almost constant torment and tears. She seemed to be suffering such frustration and such regrets. After that, she grew calm, slept for a year or more while on hospice, then suddenly got up out of her bed and went to the lounge and started talking to the other residents. There is no telling with this disease. She no longer walks, but talked to me with increasing lucidity the last time I could visit her. Definitedly lost in her own world most of the time, however.
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I like how you staggered the lines. The formatting fits the poem.
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We watched my MIL go through dementia it’s terrible. Each week we would visit her and while she knew we were her “Family” she gave up introducing us around because one day while meeting her “friends” l her daughter in law was her Mother, her Sister and her daughter in one visit. We never corrected her and just went with the flow so she didn’t get upset. She is my letter F later today. Sadly she passed in April last year and due to the Covid outbreak we were not able to send her off or even actively participate in her final moments. I’ve always wondered if she passed thinking we had all abandoned her. I hope and pray she knew she was loved.
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So many have been in this same situation. If she was in middle or late stages, I’m quite sure she didn’t know the difference. She was probably visiting an earlier version of you in her mind. My sister remembered me as a baby in arms–when I was 70!
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This may be my favourite of yours of everything I’ve read and heard over the years of our friendship, Judy. I have copied it and put it in my OPS (Other People’s Stuff) file. I have to show it to Ted and I know I’m going to want to read it many, many times. (It follows the train of mine of yesterday). Just beautiful. The last two stanzas in particular are fabulous. “…picnic of pick-and-choose…” Exactly.
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I take it that your mother is in the first stages of dementia, Linda? I have loved reading your poems over the past week. You are now in my favorites so easy to find. I sort of wander around lost in the internet otherwise.
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I just love, love, love your take on this!
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Thanks, ForgottenMan. You were so good to her when we visited her her last few months in her own house. I’ll always have good feelings about that visit and you did so much to allay her anger over our helping to clear out her house. xo
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Dear Judy,
Because of my love for Betty Jo, this helped me understand what she is going through. I visited her when she was so agitated and miserable, I ached for her.
So knowing that she has found peace in her world makes me so happy, you wrote brilliantly and I thank you and love you,too.
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I remember that she threw something at you. That was her worst time. It would be much different now, I’m sure. I hope I’ll soon be able to go see her. How far are you from Minneapolis now? I know you have moved.
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I am in St. Paul near Karen. Please let me know when you come……if you have time I would love to see you.
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For sure I will.
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A poignant exploration
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Judy,
When Shirley was in the hospice, I spent every hour with her, day and night, they let me sleep in a lounge chair in her room. One thing for her, even while she was still at home and even more when she was in those last phases was those people who gave of their selves going there and playing or singing to the patients and family, harp music seemed to be the most relaxing. From this I learned that music was a way of connecting with those who have lost their connection with reality and are in a vegetative state. Sense then I have gone back to the same place to help with this. I have built musical instruments called a “reverie harp” which are much like a zither or auto harp, but are monotone, so strumming it produces the same chord no matter which way you strum it. The first one I built was from a kit but then I just copied it and made several more. It is a flat harp like instrument and is easily handled. I have seen it put on a person’s chest while they lie in bed, and that person who no longer even speaks or is connected with the real world will get a smile on their face when it is strummed, showing that a connection is made. Almost a miracle~! I no longer go to that hospice because it brings back too many memories, but I have made and given these to several friends who do go, both musicians but the knowledge of music is not needed with this, because it is a monotone and just strumming it works great.
I have written an article about this and will try to find it to post. There is a good book that discusses this called “The Healing Musician” by Stella Benson: https://www.goodreads.com/book/show/698790.The_Healing_Musician
You can see the harp here:
https://www.harpkit.com/reverie-harp
SAM
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Bob made a full-sized harp for a girlfriend he had before me. My Christmas present the first year I knew him was a huge musical instrument five feet long and four feet high..it was a sculpture that was a wooden xylophone on a marble oval base topped by a hand-forged copper trumpet with a long neck that arched over the xylophone and that had two mouthpieces so if two people blew into them, two notes were sounded at once. It had a rawhide round hammer to play the Xylophone. When he died, his daughter asked for it so I no longer have it, but when I get home, I’ll publish a photo of it. Who could not marry the man?
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Ha! ha! I have made several musical instruments, a much smaller Xylophone than the one you describe that Bob made. I made it while working in Guatemala and used native rosewood, which was not very fine, and it is a bit in need of repair from being moved around for years – (it has one of the notes missing). But I have made a hammered dulcimer and several Application dulcimers among others, and I told you about the auto harps, not to talk about the many other (old) instruments that I have repaired and rebuilt. My favorite is banjos, I had about 15, which I have been giving away to musicians I know, I love banjo music and would rather hear them. Almost everything I fooled with were stringed instruments. (before you ask me,,,, I can’t play a damn thing except “boil them cabbage down” on one of the Appalachian dulcimers. Most went (like Bob’s) to old girl friends, as I also did with most of the jewelry and other things I made. But a few things are still around… My second photos of the barn will display some of them.
I may have told you that my son Mark “split” with his wife late last year and I am trying to get him to get back some of the jewelry I gave to him for her. Especially one in particular that I made especially for Shirley when she got pregnant. It is a silver female symbol mounted on rosewood, surrounded in silver, with a tiny male symbol inside. It was my “juju” for having the boy we wanted. She wore this in each of her pregnancy’s. We had three boys and after giving it to him, they had two boys. I have asked if I could get it back as it means so much to me now. She actually hated me long before she even met me and I may not be able to get it back. (she is not a very nice person)
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You certainly never will if she reads your blog and sees this! ;o)
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She is “bipolar” and does not get along with very many people that I know of. But she is very intelligent and like the “Little Girl, that had a Little Curl” when she is bad, she is awful~! I don’t think that anything I say will change things, she want take her medication. I had not been in their house for over six years and this is the reason that I now have been going there every weekend to help him. Before he had to meet me at a park or cafe for me to see my grand kids.
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Too bad. zhstf yo hsbr yo dnrsk yo drr yout lobrf onrd.
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?? zhstf yo hsbr yo dnrsk yo drr yout lobrf onrd.~?? If you do, you will clean it up~!
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Ha!!! I think it said something like “It’s sad that you have to go to such great lengths to see your loved ones,” but my fingers obviously got tangled…Forgottenman pointed out my mistake later but I couldn’t decipher it either, so I decided to leave it as is to see what you’d say. You didn’t disappoint..
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Well I thought that your fingers slipped off the keys, but then I checked and this is not the answer… You better be careful, you may now be a right winger, and no longer a lefty, your hands have already changed sides, you have been in Arizona too long~! You may have noticed that there are several keys that I accidentally hit often, due to my stiff arthritic fingers and the bad thing is that spell check changes changes them into a real word.
Another answer is that WordPress is just getting around to April Fool jokes, it posted a post twice on me and it took a long time for me to figure out how to get rid of the second one.
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It’s a crazy world.
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Brilliant, and hopeful. Love the concept: hor’s d’oeuvres of memory.
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This brought tears. It’s beautiful and I hope it’s as you have described for the victims of dementia.
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i hope so, too, Mary. Until we are there ourselves, we can only guess. And once we are there, I’m sure questions like this are the furthest things from our mind.
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Wow, you did a great job here, interesting perspective, and thought provoking!
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Thanks, Tiffany.
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Oh, this is beautiful, Judy. ❤ Much love. I was reminded of my grandmother in her nursing home years ago, how she showed me the three round air holes at the bottom of the door in her room and told me that every evening she was feeding little animals there. Who was I to tell her she wasn't?
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See what it did, it wrote “changes” twice; and I do not know how to fix it after I hit “send” (blame it on Akismet, whoever she is, and I never did learn how my “comment data is processed”~!!)
Oh today is maid day. No, not May Day, today is the day that my quiet home becomes a mad house and Tami and I must take refuge outside just to have a little quiet. But flowers are blooming so I may take a few pictures of them. Maria will open all the windows and doors then spray a lot of that “smell good” cleaning stuff around, making my house not smelling normal. On maid day, I get up, pull the sheets off the bed, and put them in the washer; and they are ready to put back on when they get here. I also wash any dirty dishes due to the fact that they never put anything back where I can find it. (also the more I do, the less time they are here) It is easier to wash things than to look for them. I never use the dish washers either here or in the barn due to using a rain water system, which is precious~! Though I have them, I have not used them in a long time.
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I have maid day three days a week. I have for the past ten years. I love having Yolanda here. She has a wonderful sense of humor and we usually pull Pasiano in on the jokes as well. I just like having that presence in the house. For three or four months last year I paid her but told her not to come because of Coronavirus. Finally, she just showed up one day and told me to go to the studio, she was going to clean the house. Then two days later she told me to go up to the house, she was going to clean the studio—then the garage. And she’s been coming ever since. I didn’t fight her. I’ve known who was boss for ten years now. If I leave the house while she’s here to go into town, she inspects my clothes and often makes me take off my blouse so she can iron it. It’s nice having a mother who cares even in one’s seventies. She is in her fifties!
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Ha~! I have similar problems. Actually I have two, Maria and Emelia. But they both come on the same day. Sisters. They came every other day until Shirley got sick then every day until she passed away, then I cut them back to once a week, but I pay them well because it would be difficult to replace them~!
One nice thing is that they bring me “breakfast~!” burritos, nachos, etc, or even sometime a McDonalds breakfast (which is a nice change). Maria is great, but her sister is a bit lazy. But they wash my cloths, and take home to iron any shirts and trousers that need ironing and will even patch them if needed (and asked for). scrub and mop the wood floors and vacuum the rugs. Wipe down the walls, and clean the windows. Even do the porch and empty the cat box that is on the sun porch. (did you know that I have porches on three sides of my house~? So it is a very thorough cleaning. About every third week; or after a visitor, they go over and check out the barn. I enjoy having them and their extended family often come too, I helped put Maria’s daughter through college and she is now a school teacher (a beautiful person). Maria has been working for me for at least 15 years.
Now the down side, they clean everything off my side tables, put away dishes and anything left on the counters, etc but the lazy one puts things in drawers or places next to where she finds them. Things disappear and often I must call her to find out where it is. Maria looks after me like I was her kid, she also passes through every room where Emelia has worked to be sure that she did a good job~! But she has a bad habit of looking at expiration dates on food etc, and will throw away anything that is out dated… I often will put my pills in the old container due to my having written what is for on the bottle. Well she threw them all out once and I had to go dig them out of the garbage can. I had a dozen bottles of special Louisiana hot sauce which I had to buy in Louisiana, which disappeared last week. Hope she will tell me where it is this week.
So yes I enjoy them but the only sounds I have out here is the birds tweeting and the damn phone ringing, so having a vacuum going and two yelling at each other from one room to another is a bit too much. They do sometime forget that I know what they are saying though and this is fun. Though they may know a little English we communicate in (Mexican), which sometime gets badly mixed up, with Castellano or Creole coming from me.
So I always look forward to Maid Day with mixed emotions, So happy to see them come, but then relax when they leave~! I know that I could not have them here every day~!
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Items put away in mysterious places, expired food thrown out.. know those themes well. But I always welcome the company and the little jokes she leaves behind her..
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Me too~! they bring a lot of light into our lives, and never anything negative~! I am happy that I got rid of that lizard that Tami brought into the house yesterday, she is so fast, I had just bathed her and she ran out the front door, stopped for only an instant, turned around and came back in with a lizard in her mouth. She does not kill them but they hide under a chair or something, then if Emelia does not find them, one of the cats will, and a cat thinks that they must be dead to make a good gift, the only thing missing would be their tail. Emelia yells and has a fit if she sees a lizard or mouse in the house and if it is dead, it is up to me to flush it. If I just take it back outside, it will end up back at my feet in the house within an hour, a gift from one of the cats. I do not have my shoes on yet and Eppie, one of the cats just got under my foot, so I was rubbing her with my foot, well she thought that was so nice, she gave my big toe a “love bite”~! Love bites hurt when they are on your toe and not expected~!!! I love animals, they ask for so little and give so much, never knowing hate~!
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