I’m glad to hear about a breakthrough in curing Alzheimer’s disease, using ultrasound.
The poem below describes what I experienced but couldn’t explain during long periods after the accident: the inability to think or speak clearly. In fact, some of my relatives feared I had Alzheimer’s.
I never want to return to that time, but one thing it gave me is a deep empathy for anyone whose brain won’t work properly.
This poem is dedicated to Jo Burton and others who have the disease, and their loved ones:
The words had left, flown off on wings
My mind confused, mixed up with things
Then empty when I tried to find
Words to say what was on my mind
And then as I searched for a word
To tell of something seen or heard
The thoughts themselves would fly away
Like truant children gone astray
And then I’d try to do my best
To bring them back, to make them rest
Inside my head, all in one place
Just stay with me, like bits of grace
And then the headaches they would start
Like knives cutting my brain apart
Like furious birds attacking it
Intent on making me unfit
To think, to speak, to read, to write
Remember anything this night
Except the pain that crammed my head
Merging with pain that made my bed
A place of war, no space for rest
To perch a while and build a nest
A place where nightmares came to dwell
Behind closed eyes and doors to hell.
Link to the recent news story about a breakthrough in finding a cure for Alzheimers:
58 thoughts on “Behind Closed Eyes”
Your poem says it so well. My Father-in-Law suffered from Alzheimers the last few years of his life. It was heart breaking to know he was there yet unreachable. I was also very glad to hear of the possible breakthrough in treatment. Thank you.
Thank you, Karen. I tried to get onto your site today without luck. Is there a new URL?
I’m not sure why you had trouble. Try clicking on this. https://lytrooretreat.wordpress.com/
How very kind and compassionate Cynthia. Your poem gives us a poignant sense of what it’s like to be lost. My step-father suffered from Alzheimers and it was hard to understand and reach him. I’m glad there is progress on treatment. I personally suspect sugar is one of the triggers or possible causes.
I am thrilled at the thought that there might be a cure, whatever it is.I hate and dread that disease. I’m sorry it claimed your stepfather. I wish that on no-one.
Thank you Cynthia. Yes, I pray for a cure as well.
Cynthia, I just spent the weekend with one of my best friends; her mom has Alzheimers. She said her mom had been saying “there’s something wrong with my brain; my brain isn’t working,” for years before her diagnosis. It’s very painful to hear about her struggles and frustrating for her mom when she’s lucid but can’t find the word – your poem says it so well. Thanks!
It’s a terrible feeling and I identify with it. I kept saying that too. And I can attest that it’s a terrible feeling, whether you have Alzheimer’s or just plain brain trauma. Even when you speak, you never know if you are saying what you mean to say. I kept asking my family if I was making any sense at all. Even at my ‘good’ moments, I could not follow a conversation if there was more than one other person in it, and would have to leave the room because my distress and the headaches were so awful.
Wow, Cynthia, sounds like a scary time. Hope those days are far and few between or mostly behind you.
I hope they are far behind me too. Thank you.
a powerful poem Cynthia – and I’m excited about the potential treatment of Alzheimer’s using ultrasound. Go Australia!
It’s interesting that the government invested so much money into the research. Much of the time, we are dependent on “Big Pharma” to find the cures for disease. Go, Australia!
Love your poem Cynthia, Alzheimer’s is a terrible thing. I have several family members that are suffering from Alzheimer’s. There are a lot of studies out there on coconut oil as well. We have had much success using coconut oil. It’s a extremely frustrating disease.
I’m sorry to hear about your relatives, Michael. But I’m glad to hear about coconut oil. How is it used?
Coconut oil was a staple in Jamaica till the advertising convinced our families that it was bad for us and introduced foreign oils. Amazing that it is now seen as a wonder food.
Anyway, please tell me how it is used to help the fight against Alzheimer’s.
Hi Cynthia, I had checked email and blog post earlier today and then back to the shop. Just finished for the day.
thank you, My dad’s doctor recommended it and it has help him a lot. In fact, my wife and I have started using it a lot as well. Ok, the coconut oil can be mixed into in your food. There are many website about the study of the coconut oil and Alzheimer’s and they can explain it better than I can. If you Google you will find them, here is one that I give people to start at.
Hope this helps, Michael
Thank you, Michael. I checked it out. Interesting stories, and I am pleased at the thought that people can find ways to lessen the loss of memory and cognitive function. It’s a horrible thing.
It’s a terrible disease. Especially for those who recognize the decline and realize what’s ahead. We had several family members, too. It’s easier on the person if they don’t recognize it and just happily slip away – hard for those left behind who have to cope during the process.
Poem is perfect.
I am sorry to hear that it’s affected your relatives too. How sad. and you’re right: knowing that something’s very wrong is the hard part for the person so affected.
thank you for the compliment for this poem. I can’t even tell you when exactly it was written: I found it only recently. It brought back glimpses and memory fragments of those times.
That’s exciting news!
Isn’t it just fabulous news? Not just for those now affected, but those of us who will get it in the future.
Thank you for your wonderful poem!!
Thank you, Vera. I’m glad you like it.
Cynthia, you have been in a deep trench. And what accomplishments you’ve again attained because you fought back and refused to surrender. You inspire all of us. Alzheimers claimed my mother’s mom. But not before she passed on a fondness for roses and all things lovely to me.
Blessings ~ Wendy ❀
Thanks, Wendy. That must have been a tough thing to witness, and be part of. I’m sorry.
However, how lovely that she passed on her fondness for roses. So did mine. She loved gardens and flowers.
Did your mother’s mom pass on the secret to growing roses wonderfully? My mother made it seem so effortless, but now I see that she was using either high skill or the ancient art of magic – both of which have eluded me completely.
What a frightening experience! Your poem really is moving. Thank you for sharing it and helping us understand.
Thanks for your response, Theresa. It was indeed a frightening experience.
Very powerful Cynthia – a disease that is unforgiving for patient and family. Your courage after your accident, give us all the example of what is possible. Thank you for sharing this ~
Thank you, Mary. I must confess that the courage got beaten out of me and I’m still working at it. But I keep trying, mainly in small ways. Thanks again.
Thank you for the link to the Alzheimers article. I have a lost a few realtives to the disease, and it is good to hear there may be a cure. Your poem was quite touching. I am sorry that is what you felt like after the accident. I can’t imagine the pain you went through.
I give thanks every day that I am alive and able to do even one thing to help others. That feeling of being entirely lost is a terrible, terrible thing. I am sorry your relatives had to go through Alzheimer’s. Thank you for your response, Lavinia.
Finally finished the last 10 pages of your book, Cynthia. After devouring the previous pages in 2 sessions, I think I was trying not to finish it so it wouldn’t end:0)). It reads like a beautiful lullaby, full of grace and love.
Oh, Beth. That’s such a lovely reaction. Thank you very much for taking the time to buy and read it. I appreciate your kindness.
This treatment sounds very promising. Research scientists give sufferers hope. I wish they were given more financial support. Forgive my poor memory if I have sent this clip to you before but I love it, and I don’t mind watching it over and over. https://www.youtube.com/watch?v=54AtoQVGfwU . The documentary is narrated by Olivia de Havilland who will be 98 this year. Your poem is poignant.
Thanks for this. A lovely film that confirms that music and art still speak to people who have Alzheimer’s.
How good that Olivia de Havilland narrated this at age 98.
What I find surprising is the statement that “people still have their imagination intact, all the way to the very end.” I wonder what that really means.
Thanks for your comment on the poem too, Gallivanta.
I haven’t seen the full documentary so I am not sure of all the details. What I thought interesting was the importance of using our hands. Perhaps you didn’t paint when your mind was being so awkward but picking up the pen and writing (painting/recording with words) was the way your brain had a chance to be more peaceful. Yes? One of my favourite people is Canadian Barbara Arrowsmith Young https://www.youtube.com/watch?v=o0td5aw1KXA You may know her. Handwriting exercises are an important of the curriculum in her classes.
Thank you for that link. She has a great story, and thoughts about changing the brain.
You’re right: maybe all the writing I did in the journals I had in every room was a good thing for that reason too!
I did try painting but should have gone to a tutor because I simply could not follow the instructions at the time, simple though they were. An artist said water colour was the easiest, but I just couldn’t get it. That too, might have made a difference. But you’re right, I tried to paint pictures through my words, and retrained myself to listen to one thing at a time (more than one input, even a distant sound, was sometimes really painful to deal with).
The brain is a weird and wonderful thing indeed.
Indeed it is, and yours is a remarkable one. 🙂
Aww … gee whiz … ya thin’ so? OK, I will say this: I had a wonderful brain in my earlier years. And I am trying hard to help it recover.
And you are probably doing things that we all should be doing to sharpen our brains and make them work more creatively and efficiently. Remember brains need lots of food! Do you struggle with getting adequate nutrition simply because you feel unwell etc? If I am stressed or out of sorts my appetite and my stomach simply shut down which is really annoying because these are the times when the brain and body most need food.
Guilty, your honour. Especially when pain strikes more viciously and a walk to the kitchen feels like going to another country.
Yep, yep! My mother absolutely loathes those liquid meals in a bottle (she is required to supplement her diet with them) but I would have been lost without them sometimes. From time to time they have been my sole diet. Good thing is that I don’t have far to go to the kitchen. 😀
Wonderful news about the breakthrough. Sorry to hear that you were so unwell. Your poem has much meaning ..
Thank you, Julie. Yes, I am thrilled to think this might be a cure. Waiting for it to be confirmed in trials, but their breakthrough is such a positive thing.
This news is so exciting–I hope it pans out. Your post, and your poem, obviously touched so many of us!
Thanks, Kerry. I am thankful that there are more good days now, and that I reached a point where I could write a poem that expressed one of the most terrifying outcomes of that accident. My goal is to be able to write what it’s like to be caught in a PTSD episode, but that’s still too terrifying.
My mom suffered from Alzheimer and a few years ago, during a serious illness ,I had no short term memory for months ( it is still iffy)…your poem is poignant and endearing. It describes so much of what is so hard to explain. The news of this breakthrough is very encouraging…Alzheimer is a cruel disease. xox Johanna
ps I love the sweet little bird with a message…
Thank you, Johanna. I’m sorry that your mom went through the ordeal of Alzheimer’s. And to hear that you had memory losses for months.
As you know very well, it’s a weird, weird thing and very distressing when you are in it and trying to fight back.
The brain’s a weird and miraculous thing and one thing that gave me hope was the book on brain plasticity – that your brain can get better.
For an example of the weirdness, I know I wrote that poem. I know it must have been in the last two years. But I have no memory of writing it. I’m not sure if that’s my mind protecting me from the distress that writing it must have induced. The brain’s a very weird and miraculous thing. (Did I say that already? Smile)
I love your poem – and it is a true poem that gives words to feelings – something I struggle with. I have also read with interest all the comments of your followers and looked at the interesting links – these developments are so exciting!
I feel so much pity for those with memory loss/dementia/Alzheimer’s Disease. I worked as a volunteer for a few years at a day centre for sufferers. There is so little funding for things like this – we were only able to have one session per week from 10 am til 3 pm. We enabled the carers of the people with memory loss to have a few hours off – a little time to themselves knowing that their relative was well cared for. We gave them lunch and provided company for them. We tried all sorts of things to stimulate these ladies and gentlemen. Simple card games, a little cooking, planting bulbs, looking at pictures and photographs, visits from interesting people etc but the most favourite activity of all was singing. A man who played piano visited once a month and we had an afternoon of singing all sorts of songs and hymns. We had a couple of ladies who couldn’t talk about anything most of the time and who sat silently through the day but after the singing they would chat away and talk about all sorts of things. It was absolutely wonderful to see.
The saddest thing I remember about my time there was a visit from a 40 year old man who had Alzheimer’s who came with his wife because we had been recommended to him. He was very depressed and totally aware of his situation and when he saw what we had to offer and that the rest of the clientele were in their 70’s or much older he couldn’t stay. There was nothing available that could help a young man like him. There was an article on our local news channel last week about a young man of 39 with Alzheimer’s disease. His brother of 43 is in the last stages of the disease and his father had died of it at the age of 40 I think. This young man is taking part in research to help others with the disease that will surely take his life in the next few years.
Brain trauma is a most awful thing and I am so sorry you have had to suffer so much.
With love, Clare x
Thank you for your caring, considerate response, Clare.
How sad to hear about that young man. Very sad. (Have you seen the movie Still Alice? Or read the book? It’s about a university professor in her early 50’s who gets early onset Alzheimer’s.)
How encouraging to learn about what you and others have done/are doing to help people who have the disease. They really need this care and attention. I can imagine that a former gardener might well enjoy the feeling of planting bulbs, and of course, singing seems to wake up something in everyone. thank God for music.
Such a contribution is a blessing to these patients, even for the few moments when they are lucid. Bless you and other volunteers.
Many people are afraid to visit someone with Alzheimer’s and the locked wards can be a bit intimidating at first, as are the patients with vacant eyes, who never move. But it is important, for both carers and the patients and their families (and for visitors) to know that someone is looking in on them, and that someone else cares to do so.
If a cure has been found, or is about to be found from this breakthrough, I think I will go outside at midnight and bay at the moon with joy. Oh, and I must bring some champagne, too.
Let us hope.
I’m glad to hear there has been an advance in the treatment of Alzheimer’s Disease. Both my mother and mother-in-law were afflicted, and it is a very frightening illness.
I’m so sorry to hear that. From the responses to this post, I see that many families are affected, often with more than one relative so afflicted. I hope this is a cure.
Cynthia, your beautiful poem brought me to tears. Before leaving the geriatric nursing profession, I cared for many with senility and Alzheimer. Although we were trained and cautioned about becoming close to patients, in my case it was an impossibility and after just four years I suffered from terrible burn out and depression. Thank you for this. (HUGS)
I can see that. When Jo was in the Alzheimer’s ward not too far from my home, it was an emotional experience every time I visited. I always left there wondering how everyone copes – the patient, who has moments of clarity, looks around and finds herself surrounded by strange elderly people; the caregivers who must find the humanity in each person and care well for them; the relatives who visit each time.
My heart goes out to you and to all nurses who have that experience, Elizabeth. I pray that if I am ever a patient in such a place, I will encounter nurses like you, but that you will be so well supported that you don’t have to burn out. (If that is possible.)
Thanks for your response to the poem, too.
I cannot imagine what it must be like and how frightening it must be to go through. I pray it is not my fate. I’m delighted it isn’t yours.
Words full of emotion!! Beautiful post. Tina
Lovely poem, Cynthia. May none of us ever know this disease, and how wonderful that they continue to find new possibilities for helping cure it.
I am so excited by the latest news, Jeanne, and really hope it amounts to something.