Posted on August 26, 2010 by

Saying “Hello” to a Changing Mind

The Long Hello – The Other Side of Alzheimer’s (excerpt):

Every day I sit with my mother and watch the sea. 

There’s a row of birds perched on an errant log—cormorant, cormorant, seagull, heron. Crow.

Cathie, sometimes I drift off for ten minutes and I don’t know where I’ve gone.
“Does that bother you, Mum?”
No, it doesn’t. Are you my daughter?

We watch frantic wing-flitting at her bird feeder. Chickadees, starlings, sparrows. A house finch, brown-striped.

Cath, I think it’s a finch, it’s only . . . oh—a finch a finch a finch! Are they trying to tell you they aren’t in there? What are they trying to say?
“To say . . .? I don’t know.”
I think there’s something, they’re trying to get something across, aren’t they, love?

Love? How do I get home or when I get home how do I get home?
“Mum, you are home, see all your things around you?”
These are my things? How did they get here? I think that girl, she was the one I found most interesting but sometimes I think she employed too much use of the wind.
“Who? Who was that?”
Who? You’re a regular customer and I’m the one that rushes in, all eyes. This is my home? Do I own it?
“Yes, you own it and you’ll always be able to stay here.”
Good, because I never want to leave here. Getting them unscrambled is an important
thing—you go 7, 8, 9, which means you’re pretty strong which is a good thing. And the birds, that’s what they were screaming about, these little ones this morning.

“What were they saying?”
They said, ‘Stay little one, stay.’ And I said, ‘Okay, okay.’
“That should settle it.”

I make tea.

Tea is a more pleasant drink. It just seems to sort of go down and settle things.
“You’re my favorite person in the world.”
Favorite amongst the constipated you mean.
“How was your day?”
Today I was down at the horse barn. It came with lots of blessings.
“Oh my . . . I love listening to you talk.”
You love what?
“Listening to you talk.”
Oh. I thought I heard you say—I love looking into your voice.
“I love that, too.”

My mother’s in bed, propped up with pillows. I’m curled up beside her. It’s a tight squeeze. Pillows to the north, under her head, pillows east and west under her shoulders and arms. South, under her knees. A lace collar circles the neckline of her now-loose-fitting pink nylon nighty.

She holds her baby doll against her right shoulder, nestled under her chin. From time to time she remembers it’s there and nuzzles its forehead. Smiling, her eyes closed . . . the most beautiful gesture I have ever seen.

My mother’s nose is running. I press a Kleenex up against her nostrils.

“Is that better, Mum?”
Yes. Thank you, dear.

I leave two fresh pieces of Kleenex in her hand.

Fly away, fly away, there you go, there you go . . .

She has hold of the two pieces of white Kleenex and floats them through the air, up and down, up and down. They take on the perfect shape of wings.

A white dove.

She watches the bird.

There you go. Up, up, fly away, fly away . . .

The second most beautiful gesture I have ever seen.

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  • otis henry said:

    "... thanks to you, kevin. i was not sure whether or not, i was too unclear. & to you, & to those who may have this experience, i'd "like" to hear about your solutions. keep on. keeping on!".

  • KevinTran said:

    "Nice post!".

  • otis henry said:

    "... if this is a comment or observation or puzzling experience - i am not sure. sincerely i say to the woman with the big dogs - you are a trooper & i (as a 62 yr old man - living with my 88 yr old mom)... have gleaned some insight into what may make a person feel secure in his/her own life. my mom had a stroke two yrs ago- has expressive aphasia & has just recently gotten a pacemaker to let her heart know ... not to go lower than 60 beats per min. she is a tiny woman (88#'s). my puzzlement is her perception of her world - and as i am beginning to read and understand - her world is not so unusual. i do try N O T to prove a point as to what is "real & not real", for i'd guess what i see as real is not necessarily so to her. & vise~versa. my main puzzle is ... how can she think there are two of me ? ! she says - oh he must have gone out or where is the other person or are we the only ones eating dinner? i do try to maneuver around unanswerable questions in various ways keeping in mind - hopefully - th@ there is no real concrete answer & th@ it may be better to just be amicable & engaging in some other topic . i do try to understand what it is my mom is trying to "get across" to me. i do have to engage guesswork and say "don't worry mom, i know what you mean". well, i must conclude my rambling, & keep up the cheery sky outlook (to the woman with the two big dogs). it is an ongoing course correction / day by day / be it morning noon or night. god's speed to all of us who care & try & love our deserving loved ones. * ps - i did e-mail "ask the experts" & do hope to hear from "them". much thanks & community spirit! otis".

  • carolyn said:

    "During an extremely difficult perod of my life, I began to have memory problems and was diagnosies as Dementia. My dog died of cancer, I had to sell my home to access money I needed to live on. Never expected to live to this age (75) since all my parents, grandparents etc died young, from the 40's to 60's. I have four university degrees, teaching certification and have been involved in very complex jobs, such as manager of an aviation company, Then during this very agonizing period in my life, having to sell my home to get money to live on, not wanting to move, I suddenly became flustered, forgetful, emotional, and I felt it was all caused by this stress and losses and feeling unsure of how I could live in a tiny rental suite with my two big dogs. Now almost a year later, much of that has eased, but I still have this feeling in my head of congestion and pain and with vision problems. Lots of stress in my life, my brother has Parkinsons, sister has a rare disorder, another sister died, another sister in poor health, my dog died, my car was stolen, had to get rid of most of my furniture, and much more, and now live in a two room apartment. Its great because its ground floor and I have a back yard and door to outside, it feels like a house. Dementia doesn't cause pain in the head. And for the past year or more I've had this dreadful pressure in my head, and pain, and ears ringing, and nothing has been able to clear this up, nothing has been able to find the cause. I had several surgeries including two on my eyes, my car was stolen, and more and more of these painful events. And thats when I began to be forgetful. Now was that caused by the stress and loss and upheaval in my life? To me it seems very posisble. Or is it dementia or Alzheimers? On very reputable websites I have read about symptoms and I don't have any of the classic symptoms of Dementia or any related condition. Now it begins to bother me, I begin to believe I have been misdiagnosed, and that all the difficult outcomes have occured based on something that is not true. I've read all the Mayo CLinic Website material,and many other reputable sources and it just doesn't ad up. The worst symptom I have isn't even mentioned in the diagnostic list. That is, the sense of painful pressure in my head, my ears rining so loud (Tinnitis) constant infections in ears, sinus, etc and headaches.None of these are from Dementia. The centre of my head aches so badly, all the time,CT scan normal, but what is causing this pressure and pain? I thought maybe allergy, take allergy meds, no change, no relief. My drivers licence was taken from me by my doctor. No chance to go through any testing of driving competence, just took it away. The inside of my head is in pain 24/7, loud constant ringing sound in my head, difficulty swallowing, pain pain pain. Likely allergy of some kind, since no infection found. But these are not signs of Dementia. I read newspapers, watch complicated TV programmes, keen on the news of the day, I care for all my financial matters and banking on my own, I do all my grocery shopping and other day to day matters and do just great. Get my car services, make appointments and get to them, this doesn't fit what I read about Dementia or Alzheimers. So where do I go from here? I have found a top specialist in Dementia etc in a nearby sity, he is based at a university, and practices medicine, and he has emailed me saying he will do an assessment. If he says I do have Alzeimers or Dementia then I will accept it and live as best I can. But to this point, I am still very concerned that the diagnosis is incorrect. My doctor sent me for medical appointments but it was at this time that I was selling my home, belongins and leaving my neigbourhood, a terrible time, a huge loss, no wonder I seemed distracted and vague, or whatever. I still can't go to the street when my house is, my former house, I get all emotional and tearful. I was there for 27 years and now I lost it. Forgetfulness alone in a senior is not necessarily Dementia or Alzheimers. I manage my life effectively, cook complicated meals, three kinds, one is the home made dog food for my two big dogs, one type of food is for my husband and the third is food for me, as I have allergies and digestive problems and have had for decades. My doctor had my drivers licence suspended, a word that's a big laugh, suspended means it will be over at some time, oh sure. The shock of suddenly being unable to use my car for anything is indescribably painful. I have had constant ear infections and cannot use my hearing aids and my poor hearing impairs my life to some extent but I manage. I had to have two surgeries on my eyes to clear out cataracts, big time stress, now down. Put together all these events no wonder I seemed forgetful!! My brother and sister both have very very difficult chronic illnesses, more stress. Surely mega stress can trigger memory problems. Losing my house alone was a real tough period. I handle my finances, my car maintenance, (husband drives it when I want to go somewhere, he has his own vehicle but its uplifting to go in my own, even if I can't drive it. My husband does not buy into the diagnosis either. I have a housefly walking around on my computer screen, as I type, the fly seems to enjoy my being here and typing. Neat. Alzheimers or Dementia do not cause pain, my face and head are in constant severe pain, from horrendous congestion, infections of my tthroat and sinuses. This constant pain interfers with my being able to do comples math or retain memories such as the date. I don't need to know the date anyway, I'm retired, and most of the time, the date is irrelevant to my life. My doctor had my drivers licence taken, so I live stuck at home for the most part in this tiny apartment. My daughter takes me to get groceries because I can't get them home without my car and cabs are too costly. I have to take my laundry to a laundromat and believe me, its a complciated task, strange washer and dryer machines, choices among sizes, into the washer, then into the dryer and then to home, requires numerous trips to the laundromat and without a car, its some big task. I make all the food for my two bit dogs, food for my husband and separte food for myself as I have allergies to several items including wheat and onions. I have constant pain in my head, no diagnosis found, likely allergy to dog dander and the cleaning fluids used in the hallway outside my rental unit, argghh. Its awful. So here I am stuck with this diagnosis, and I finally gave up on trying to have this quesionned. One of my three dogs died in the beginning of all this, very sad. Lost so much of my furniture etc, far too much from a house to an apartment of two rooms. So there you go, my friends, is it Alzheiers? Is it Dementia?? Or is it neither. The fly is sitting on the typed word "sad". My cataract surgery so successful I can see this tiny housefly. So how do we know for sure?".

  • RY said:

    "Fabulous posting. This important is just a tremendously nicely structured post, just the critical info I was looking just for. I praise you".

  • Julian Lieb,M.D Burlington Vermont said:

    "As depression predisposes to Alzheimer’s disease,(verify with Pubmed) it is reasonable to suspect that antidepressants are capable of preventing or arresting the disorder. Excessive synthesis of prostaglandin E2 generates amyloid (verify with Pubmed). Such non-steroidal anti-inflammatory drugs as aspirin and ibuprofen, as well as antidepressants, inhibit prostaglandin E2 (verify with Pubmed). Suppression of prostaglandins, in preference to genomics and biotechnology, has corrupted medical progress. Constantine Lyketsos, MD, professor of psychiatry and behavioral sciences at Johns Hopkins University showed that Zoloft improves the quality of life for Alzheimer's patients with depression, reduces agitation, aggression and anxiety, and slows the functional decline. Zoloft did not improve impaired mental abilities such as thinking, remembering, and learning. One antidepressant does not speak for all. Antidepressants offer many advantages and few disadvantages in addressing Alzheimer’s, and beggars can’t be choosers Alzheimer’s was recently referred to as “the coming tsunami,” but you would not think so, given the lack of response of major Alzheimer organizations, when offered this resource. Julian Lieb, M.D Retired, Yale medical school professor".

  • Lorraine Lewis said:

    "Cathie, you have created poetic beauty and such a positive understanding out of a situation that most people would regard as tragic. Your writing is wonderful. I know your book will be an invaluable resource for anyone connected with any form of dementia.".

  • Rosella said:

    "I too love the deeper way you look at communication that could be viewed at so many levels and in such different lights - seems like the basis of a genuine loving relationship and how amazing that you could change along with your Mom thanks Cath".

  • Candy said:

    "Cathie, Your writing takes my breath away. It's lovely and shows the tender side of this disease. I have just passed the two-year date of my mom's passing due to complications of dementia. I still struggle to make any sense of it all, but writing seems to help as you will see in my blog - Cheers to another daughter of a fine woman.".

  • Rob Madden said:

    "A courageous and beautiful piece of writing, your words fly straight through the heart of things. And what a world we find there. Thank you for this.".

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