listening – My Alzheimer's Story

The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.

I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.

Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.

I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.

As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.

Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.

I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.

Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.

Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:

More about the hugely talented Alex George here.

https://myalzheimersstory.com/2018/01/25/the-beautiful-tennessee-waltz/

https://myalzheimersstory.com/2016/11/27/do-you-see-what-i-see/

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Care Partnering, Music, Videos

the beautiful tennessee waltz

January 25, 2018July 12, 2018 My Alzheimer's Story

I can’t carry a tune in a bucket. But Mom had a lovely voice, and she knew hundreds of songs, a few of which I learned during our last five years together. I had never heard The Tennessee Waltz before Eric played it in one our healing music sessions, which I started with Mom in November 2013; The Tennessee Waltz quickly became one of my favourites. The 1950 Patti Page mega hit has been covered by some of the world’s most renowned female singers including Connie Francis, Emmylou Harris, Anne Murray, and Bonnie Rait and Norah Jones (see below).

Here’s Mom singing it with Eric and I on January 25, 2014:

Connie Francis (1959):

Patsy Cline (year unknown):

Emmylou Harris (1981):

Anne Murray (year unknown):

Bonnie Rait and Norah Jones (2007):

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Care Partnering, Life & Living, Memories

in the dead of the night

February 17, 2017December 9, 2020 My Alzheimer's Story

November 11, 2011: “Punkie?” Mom doesn’t wake me when she calls out. A woodpecker beat her to it an hour ago. I get up, put something on, pad across the hall. It’s November 11, 2011; I’ve been back 11 days.

“Are you okay Mom?” I say from her bedroom door.

“Yeah, but I want to get going, or do something, I’m getting sort of tired,” she says.

“Uh huh,” I agree.

“What about you?” She’s worried, anxious, confused.

“I’m okay,” I lie.

“It’s so dark, and I don’t seem to know where I am,” she says as I crawl into bed with her.

“Well, you’re in your house.” I try to make her feel safe amidst the confusion.

“I know, but it doesn’t seem to be bright out or anything.” She doesn’t understand. Not understanding is scary. So is the darkness.

“Because it’s nighttime,” I say.

She considers this. “Anyway, I…. Anyway…” She searches for something to hang on to. Her world is upside down. It’s dark outside when it should be bright and sunny. She doesn’t know where she is. She wants to do something, but has no idea what. She’s afraid. I would be afraid too, if I were her. I remain calm. So far I’m still able to.

“Do you think you can go back to sleep?” I ask.

“I don’t know, I’ll try.” She will. Give her a few minutes.

“Do you want me to get you some milk or something?” A stab at being helpful.

“No, no…I’ll just…I’ll just wait…I don’t know what we’re going to do.” She looks up at the ceiling, the back of her left hand lying against her forehead, palm up, fingers slight curled. Her right hand clutches the duvet.

I don’t know what we’re going to do either.

“I can’t sleep too well you know,” she says in a whisper.

That’s one of the reasons I came back to live with her. She’s been up several times every night since, and I’ve begun to suffer the ill effects of too little rest.

“Did you sleep?” She checks in with me.

“Yeah, except there’s a woodpecker outside.” I try to take us somewhere real and concrete that’s also not dark and scary, and then I half laugh at the irony of a bird keeping me awake.

“What’s he doing?” Her fear evaporates for a moment.

“He’s tapping on the tree. Tap tap tap tap tap. And then he stops. Maybe that’s what woke you up Mom,” I posit. “The woodpecker tapping.”

“I don’t know,” she says.“Where is he? In this area?”

“Over by my room, in a tree.”

“Maybe you’d better stay in here,” she suggests. She’s not concerned about the woodpecker keeping me awake. She’s nervous when she’s alone. Never used to be though; lived in this big red brick house with a cat or two for close to forty years. “It’s hard to know what time it is or anything.”

“It’s almost 6 o’clock in the morning,” I say.

“It should be lighter. It should be brighter out, don’t you think?”

“It must be cloudy. That’s why it’s dark outside. It’s dark outside, because it’s cloudy.” I repeat in reverse for good measure. “Because you’re right, it should be lighter.”

“I would think so.”

“It’s because it’s cloudy.” I repeat again, hoping it might stick. It doesn’t.

“It’s pitch black outside. I don’t know why it’s so dark.” Her mind mirrors the state of the pre-dawn sky.

“I put some night lights in here so you could see better. But they don’t shine outside.”

A few moments of silence.

“It seems as though we’ve been in bed for a long time,” she ventures.

“Does it?” I query.

“That’s the way I feel. I don’t know why it’s so black out. Why is it like that?”

“It could be because it’s cloudy today, and it’s early in the morning. It’s not even 6 o’clock yet. Do you want me to turn a light on?” I ask.

“No. I’ve got the light here.” She motions to her left. The table lamp my brother gave my ex-husband and I as a wedding present sits on an antique pine table. The shade is creamy white and decorated with tiny cutouts; the bottom is fashioned from an old glass oil lamp. It’s half full of dried potpourri: red, mauve and pink petals. The light is off.

“Do you think you can go back to sleep Mom?”

“Well, I’m gonna try. I’ve gotta’ do something.”

“Okay. I’m going downstairs to do some work.”

“Oh shucks,” she says, the worry has crept back in, like the dawn soon will to the day.

“It’s time for me to get up.” I yawn. “If you need anything, just call me, okay Mom?”

“Okay dear. Or I’ll go downstairs or something. I don’t know what’s the matter around here. Anyway, I’ll try to sleep a bit. I don’t know how you can do anything when it’s so dark,” she says as she pulls the duvet up to her chin, eyes wide open.

I leave her alone in bed, and head downstairs to the den, which is underneath her room. I’ll hear the floorboards creak if she gets up. With any luck she’ll fall back to sleep for a couple of hours, and I’ll have some time to myself before she awakens for good.

Click play to hear the first part of the conversation:

https://myalzheimersstory.com/2018/11/13/10-reasons-people-living-with-dementia-get-up-in-the-night-and-what-often-happens-when-they-do/

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Care Partnering, Music, Videos

the looney tunes trio (unplugged): a late-stage alzheimer music session during which we rock

January 22, 2017January 22, 2017 My Alzheimer's Story

Flashback October 25, 2014: I get lots of positive feedback from far and wide regarding My Alzheimer’s Story. Thank you for visiting, following and commenting on the blog. In particular, people really seem to enjoy watching our “music videos,” which I usually edit and shorten before posting (see here, here, here, and here). This one is raw and “unplugged” so you can get a better feel for how our sessions evolve in the moment.

I can’t say enough about Eric’s skill and flexibility in helping us weave magical musical experiences week after week for more than a year in the late stages of Mom’s illness. The sessions last for 60 – 90 minutes and each flows in a completely spontaneous way, driven by Mom and guided by Eric with me there to hold hands and add to the mix when it fit. The combination works beautifully. We have become a trio of sorts, and we jam in our own uniquely unplugged way.

Although the clip below is about 12 minutes long and therefore only a fraction of the whole session, it should give you a real feel for the spirit and rhythm of the work/play we do together. This particular session was relatively subdued until about two-thirds of the way through when Mom decided she wanted to get out of her favourite blue chair and walk around. That’s when I started to record a slice of the afternoon.

In the clip you’ll see Eric and I following Mom’s lead and supporting and encouraging her when it’s appropriate. We make improvisational offers to which Mom responds and upon which we then build together. Things go from quiet to raucous to quiet to energized again until Mom signals it’s time to wrap up that particular “set.” The part I most wanted to capture (Mom drumming on the guitar) is really dark because of the poor lighting and the fact I film everything on my trusty iPhone 4, but I’m sure you’ll get the idea… 🙂

Subscribe to my updates and download free stuff here.

Challenges & Solutions, Hope, Joy

doing the right thing when everything seems wrong

January 14, 2017April 30, 2020 My Alzheimer's Story

“I’m going to stay here and care for her for a year because I know she wants to be in her own home as long as possible,” I said to my friend Kate shortly after I arrived back in Canada in October 2011. “After that she won’t know who I am anymore. She’ll go into a nursing home and it won’t matter if I’m around or not. Then I’ll go somewhere else and restart my life.”

“That’s crazy,” Kate said, “You won’t leave.”

“No it’s not, and yes I will,” I was unequivocal. But Kate was right and I was wrong. It was crazy; it got crazier; and I’m still here even though Mom’s gone.

My misguided beliefs about Alzheimer disease were based on ignorance. I learned a lot in the five years prior to Mom’s death in August 2016. I became intimately acquainted with dementia. I rode its roller coaster with Mom. I tore my hair out, cried in frustration, cracked, healed, broke into a million pieces and reassembled myself. I witnessed a beautiful friendship, experienced unconditional love, and found joy in the midst of despair. I observed, researched, listened, shared, and advocated. I got to know my mother and Alzheimer’s disease in surprising new ways. I completely changed my beliefs about dementia, those who have it, and how we should treat it and them.

I’m not alone in thinking our elder care needs to be overhauled. But change takes time, and unfortunately Mom’s ran out before my advocacy could impact her care. I did whatever I could to make the last years of her life as rich, full and joyful as they could be. That meant swimming against the tide, and getting in heaps of trouble. It pitted me against so-called “experts” operating on incorrect information and fallacious beliefs.

“I don’t believe (Mrs. Macaulay’s) present condition would allow it,” a social worker wrote in late 2013 in response to my repeated requests for weekly music therapy sessions for Mom. The social worker was 100% dead wrong. By the time I was made privy to her opinion, I had found Eric through a series of coincidences and hired him. I went ahead and did what I knew was right for Mom. Eric and I spent more than 50 magical musical hours with her. We sang hundreds of songs. We covered The Beatles, Herman’s Hermits, and Johnny Cash to name but a few.

Meanwhile, overwhelming evidence came to light demonstrating how music transforms the lives of people with Alzheimer’s disease. The wildly successful Alive Inside project shows the untold happiness music can generate in people who face cognitive difficulties. The health benefits of singing are equally proven. It’s gratifying that what I knew intuitively has been confirmed with verifiable facts on a large scale. But I’ve never felt the need for “expert” opinions, others’ evidence or research studies to prove what I can see and hear with my own eyes and ears – just like I don’t need advice from people who are ill informed. I trust my own judgment when the truth lies before me. And I don’t have a problem doing what’s right when I have been wrong.

The dramatic changes I personally observed in Mom during and after our music sessions still astound me: she was always engaged and energized by the process; she was more alert, more articulate and more aware for hours afterwards; she walked more confidently and was happier. Mom hadn’t said how she felt about the sessions, which she seemingly forgets the minute they’re over. I saw the immediate benefits, but I had no idea how profoundly she was impacted until one day, unprompted, she told me the things we did together helped her stay alive. It was crystal clear to me that she had a deep understanding of what was going on around her and how it affected her even though she sometimes appeared unaware. Perhaps it was my destiny that I should return to Canada to be Mom’s care partner. Maybe life brought me to where I’m meant to be. A more religious person might call it divine intervention.

How I label it really doesn’t matter. What I do with it does. I’ve learned a great deal, I’m thankful I have dismantled my erroneous beliefs, and I am committed to using my experience to help others. When a reasonable person finds irrefutable proof she’s wrong, there’s only one thing she can do: change her beliefs and #FightThe GoodFight. The right thing. That’s the thing I must do. It’s the thing we must all do.

A version of this post was originally published in January 2015; Mom died on August 17, 2016.

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

https://myalzheimersstory.com/2019/06/07/just-like-one-flew-over-the-cuckoos-nest/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Care Partnering, Life & Living, Memories

yesterday if not sooner would have been better

November 8, 2016November 8, 2016 My Alzheimer's Story

Flashback November 8, 2011: “I don’t really want to have all those bags in there,” Mom says for the hundredth time as she walks into the den where I sit on the sofa with my laptop.

“I know.” I answer. My mostly unpacked suitcases are still on the living room floor across the hall in various states of disarray. Socks and shirts and skirts and shawls attempt to escape with mixed success. It’s been a little over a week, and it’s a bit of a mess I must admit.

“We’ll have to take them upstairs. The two of us. I don’t think I can carry them myself,” Mom astutely observes.

“I can’t carry them either,” I agree.

“We’ll have to get Lorne to do it then!” She says, clearly frustrated. Lorne is a local house painter, contractor, jack-of-all-trades and second son to Mom; he’s her go-to guy if my brother is not available to do this-that-or-the-other-thing. “Poor Lorne,” Mom says. Poor Lorne indeed.

“I’ll unpack them and gradually bring the stuff upstairs. I’ll do it as fast as I can.” I have a plan, but its execution is too slow for Mom who likes things done in Mom time, which is pretty much as soon as she notices it needs to be done regardless of what you might be doing when her priority pops onto the radar screen. Mom’s tasks trump all others. It’s been like that for, well, as long as I can remember.

“What will we do with the suitcases?” she asks.

“I don’t know. We’ll put them in the…I don’t know. We’ll find a place for them.” I continue to tap tap tap on my laptop and only partly pay attention. It’s tough to actively participate in the same conversation you’ve had five, ten, fifteen and twenty minutes ago and at least thirty-nine times yesterday. Meanwhile, Mom bounces back and forth between the den and living room.

“’Cause you don’t want to ruin the suitcases by putting them somewhere where it’s too damp or something. We’re going to have to put them somewhere where it’s…where they’re going to stay good.”

“Yes,” I agree. She leaves my side and crosses the hall again.

“And there are only so many places in the house. So we’re going to have to think about where we’re going to put them. They maybe could go in a cupboard somewhere. Because you see there’s one, two, three, four, five, six, bags,” she counts. I tap, tap, tap, fingers flying.

“I know.”

“And they’re all full!”

“I know.”

“No. There are seven! One, two, three, four, five, six, seven. There are seven. Because there is one big box here…” her voice trails off.

“Yes,” I sigh. She doesn’t hear because she’s in the other room and even if she were right beside me she wouldn’t hear anyway despite the fact that her hearing is perfect. It’s the bit that goes from the ear to the brain that’s not one hundred per cent. Or maybe information gets lost in the brain itself. Somebody somewhere may have the physiological answer but it doesn’t matter because they’re not here in this house with my mother right now and I am and what would I do with the information anyway even if I had it?

“I don’t know what’s in there. Because something, something, something’s gone wrong, I don’t know what’s happened to it. I don’t know what’s in it, because there are two big holes in the back.”

“Yup.” She’s talking about the box the spinning contraption for my bike is in; the box has holes in it and part of the equipment, which weighs a ton, is sticking out. It’s an odd looking thing that has her bamboozled.

“It’s torn you see. It’s gone squeegee.” Squeegee is one of Mom’s favourite words. It means broken, screwed up, messed up, not right, not as it should be. She and I and the box are all a bit squeegee. And we’re going to get squeegier and squeegier in the seconds, minutes, hours, days, weeks and months that follow. Oh my yes. I can see it coming. Like a whole host of tornadoes skipping across Kansas in storm season. Hold on to your hat Toto!

“I don’t know what’s in there. So tomorrow we’re going to have to sort out these things because I can’t have all that stuff sitting in the living room.”

“I know.”

“Because people come in and where am I going to put them? So we’re going to have to take those boxes up, or open them up, and put them wherever you want them upstairs. We’ll have to clear out some of the cupboards upstairs.”

“I know. That’s what I’ve been trying to do Mom the last couple of days, Mom. Clear out the cupboards so there’s room for my stuff, but I haven’t been able to do it as quickly as I would’ve liked.”

“Well then I can help you, because I don’t want them all sitting in my living room. So we’ll have to take them upstairs, and maybe you can unpack some of them, I don’t know. And I don’t know if I have enough cupboard space to put them all in like that. I’m not sure, we’ll have to look at the cupboards first.”

“Okay.”

“We’ll have to see what we’ve got up there.” She goes back into the living room. “Because you see you’ve got one, two, three, four, five, six, seven–you’ve got at least seven things and one of them is this huge…there are two huge…huge… Well there’s one really big one. I couldn’t possibly–”

“I can’t lift them either.”

“Eh?” She comes back into the den.

“I can’t lift any of them either,” I repeat.

“Well that’s why were going to have to get Lorne. You’re going to have to phone him.”

“I’m going to unpack them down here Mom, and take the stuff up in stages.”

“Oh.”

“I’m not going to carry the suitcases up.”

“Okay, but where are we going to put the suitcases?”

“I don’t know Mom, we’ll have to figure that out when they’re empty.”

“‘Cause you don’t want to ruin the suitcases.”

“I know, but I’m not thinking about that right now. The first task is to empty them.”

“And then you’re going to have to have them in a place where you’re sure they’re going to stay firm and good,” she says as if they are so many pieces of fruit instead of suitcases.

“I agree.”

“Because they’re expensive bags!”

“I know.”

“You’ve got to have them in a place where there’s not too much…umm….hmm…ummm…What do you call it when it’s in a house? It’s ummm. Well, I mean I can think about what the word is. But it’s…it’s…You don’t want to ruin all your suitcases.” Mold, Mom, the word you want is mold.

“I agree,” I say.

“Just because you have to take all your clothes out of them.”

“I know.”

“We’ve got to find a good place to put the suitcases.”

“Yes.”

She’s back in the living room now. “Because you’ve got one, two, three, four, five, six suitcases and none of them is small. Well there’s one pink one that’s kind of small, and a black one and there’s the cat sleeping beside one of them.” She comes back into the den.“You’re going to have to make arrangements for all this stuff, depending on how long you’re going to stay,” she says.

“I’m staying forever,” I reply.

“Oh,” she says. That stops her dead. For about three minutes. And then we begin again.

“When are you going to get these boxes and bags out of here?”

It takes me another week. Yesterday if not sooner would have been better.

Subscribe to my updates here.

Image copyright: paktaotik2 / 123RF Stock Photo

Care Partnering, Life & Living, Memories

yes mom, yes mom, three bags full

October 30, 2016November 7, 2017 My Alzheimer's Story

baa baa black sheep,
have you any wool?
yes sir, yes sir, three bags full.

one for the master,
one for the dame,
one for the little boy who lives down the lane.

baa baa black sheep
have you any wool?
yes sir, yes sir, three bags full.

English nursery rhyme

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

October 26 – November 5, 2011: One, two, three bags and a carry on accompany me from Dubai to Montreal via Frankfurt. I purchased the three-case set when my ex and I split up in 2005; it made it easier to manage my luggage alone on trips back and forth to Canada. The HUGE-, medium- and small-sized cases in the set attach together to form a “train” I can tilt and tow despite their substantial collective weight when they’re all full, which they most certainly are on this final trip “home.”

I treat myself to a two-night layover at the Kempinski Gravenbruch, my favourite place to pit-stop in Europe to reduce the effects of jet lag. I’ve stayed at the Kempinski many times as I to-ed and fro-ed between the United Arab Emirates and Canada over a period of eighteen years. This is likely be my last visit. Four super-stuffed and much heavier bags and my specially boxed road bike are following by FedEx, which surprisingly prove to be the fastest, cheapest and most efficient way to get them from the Middle East to Mom’s.

Lynn, my long-suffering part-time personal assistant, is mopping up the rest of my Dubai life. Before I left I got rid of seemingly endless boxes full of books and papers as well as the unwanted and/or unneeded detritus I had accumulated in my two-bedroom flat during the previous eighteen months. We labeled things I couldn’t bear not to have back with me someday with orange sticky dots, and decided which pieces of furniture would be stored and later shipped to wherever I might choose to settle in some distant future. Whatever wasn’t thrown out, given away or orange-dotted Lynn will sell. Besides stuff, I shed several buckets of tears. Lynn sniffled occasionally; she’s more stoic than I.

The trip itself is uneventful: a six-and-half-hour overnight flight from Dubai to Frankfurt, two nights at the Kempinski, an eight-hour day flight onward to Montreal, and a two-hour drive from the airport to Mom’s place in Quebec’s rural Eastern Townships. I move relatively easily from one side of the world to another as I have done so many times before. But this time I’ve also ripped myself out of a life I loved, scrunched myself into a ball as a writer might an unwanted page in a difficult manuscript and tossed myself into the wastepaper basket of a destiny I hadn’t bargained for.

Some things in my new life are utterly familiar. As usual, Mom wants me to unpack, “get organized” and toe the line before I even have the chance to take off my proverbial coat. The FedEx-ed bags arrive the day after I do, and five days later all my luggage except for my carry on, which I had quickly emptied, and my bike, which is being reassembled at a local sports store, remain mostly intact in the living room because the suitcases are too bulky and heavy to maneuver up Mom’s steep stairs.

I have begun to unpack in fits and starts and carry bits and pieces up to my bedroom, but I’m more focused on doing what I have come to do (i.e. care for Mom) than I am on doing what Mom wants me to do (i.e. get those damn suitcases out of the living room!). Having lived with her for three months each of the previous six years, I know how little time I will have to do anything that doesn’t center on her. The semi-unpacked rag tag bags are the first sign of how much I have underestimated the enormity of my task.

Whenever Mom walks by the door to the living room, which is thirty-nine times a day if not more, we have a version of the same conversation. Again. And again. And again. And my answer is always something like “yes, Mom, yes Mom, three bags full.”

Subscribe to my updates here.

Image copyright: yarruta / 123RF Stock Photo

Care Partnering, Life & Living, Love, Spirituality

what it means to be or not to be

October 26, 2016October 26, 2016 My Alzheimer's Story

To be, or not to be, that is the question—
Whether ’tis Nobler in the mind to suffer
The Slings and Arrows of outrageous Fortune,
Or to take Arms against a Sea of troubles,
And by opposing, end them? To die, to sleep—
No more; and by a sleep, to say we end
The Heart-ache, and the thousand Natural shocks
That Flesh is heir to?

From the play Hamlet, by William Shakespeare

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“Doing” and “being” are sometimes separate and sometimes intertwined. “Being” with somebody acknowledges their humanity and experience in a different way than “doing” does. Doing is about “service;” being is about spirituality and connection. Being with somebody is important to our health because meeting emotional and spiritual needs is as vital to well-being as fulfilling physical needs is.

During the time I cared for my mom, I brought joy and happiness into both our lives by doing things together: gardening, cooking, walking, flower arranging, and more. As her capacity to do these kinds of things declined, I found other ways to help her engage with life: walking in a slower way, sometimes even just standing, singing, “learning” to play the piano and the guitar, rhyming, and simply enjoying each other’s company.

As the disease progressed, we spent more time “being” than “doing,” partly because Mom was unable to do many of the things she had done before, and partly because her needs changed. So what does it mean to “be” with somebody? It begins with listening. By listening I mean being present and paying attention – paying attention to the small details of her physicality and how she was experiencing the world and adjusting my behaviour in such a way that it reduced her anxiety and increased her peace and enjoyment.

I further developed my observational skills. I learned to pay attention to the physical and social environments in which we found ourselves. Was it hot or cold? Quiet or noisy? How were the people around us interacting with us? How were we interacting with them? Not from my perspective but from hers. I became more sensitive to the way she talked. I learned to interpret her sentence fragments and jumbled words and to decipher the meaning behind them. I asked myself questions: What is she trying to communicate? How can I help her to express herself more fully and therefore be with her in her experience in the moment? I tried to discover the underlying meaning of her alphabet soup.

We had conversations in which there are rather long periods of silence. During these conversations I noticed she was still processing information; it was just at a much slower rate. She knew what she wanted to say; it was a matter of finding the words to communicate the thoughts and then helping them to make the journey from her brain to her mouth.

She was more aware of her environment and what was going on around her as well as within her than it might have appeared. I believe that as certain parts of her brain become more damaged and disabled, other parts compensate for the losses. Mom developed what I call “intuitive clairvoyance.” I know this may sound crazy to some people, but I saw clear evidence of it myself.

I watched carefully. I looked for tiny changes in her facial expressions and noted where her eyes moved. I “held space” for her to communicate with me at her own pace and in her own way. I tried to put myself in her world, to see out of her eyes. I listened with much more than my ears. I listened with my whole body and especially my heart. I didn’t rush her.

I asked lots of questions. Sometimes she answered, sometimes not. Often we just sat in silence. Just being together was enough. I believe emotional and spiritual connections as well as physical closeness are important to all creatures, and maybe even more so to the elderly (human and otherwise) as their experience of the world changes. I “read” Mom’s “state” by the expression on her face, the tilt of her chin, the look in her eyes. Sometimes she reached out to me and put her hand on mine or on my forearm or on my face. I may or may not have responded verbally, depending on the moment.

Holding space for somebody by simply being with him or her nurtures the spirit; it helps them to know they are wanted, valued, and still connected to their own humanity as well as the rest of humanity. It’s enriching for everyone involved. I also believe that being with people with dementia means not giving up on them. It means actively seeking out whoever they are now, and connecting with them on whatever level they are able to connect. It means providing them with opportunities for growth. For me, it’s not about mourning the loss of the person they once were; it’s about seeing and acknowledging the person they are now, as well as the person they are transforming into. It’s about validating their experience and process. I believe we change and evolve until we die. It’s important to be with each other in real way until we are no longer in this place, because being together feeds the spirit, and when the flesh is no more the spirit lives on.

Subscribe to my free updates here.

Image copyright: lilkar / 123RF Stock Photo

Advocacy, Fiction, Toward better care

now you see me, now you don’t

August 19, 2016February 11, 2018 My Alzheimer's Story

Winter 2014

“Hannah!”

The warning travels past its intended recipient down the hall, around the corner and into the living room where I’m transferring Mom from an armchair into a wheelchair. I’ve heard gentler “Achtungs” from soldiers in Frankfurt airport, I think to myself as I prepare to take Mom up to the dementia floor for supper.

Mom used to enjoy her meals with her friend Gaby in the main dining room, but then the staff said she was “difficult to manage,” always wanting to get up and walk around, so she has to eat in the dementia ward where people are fed instead of feeding themselves, and everything is uniformly creamy in texture. The only way to tell the carrots from the peas, potatoes or meat is the colour. I often wonder if the dollops of orange, green, white and grey glop taste any different one from the other, but I can’t bring herself to test them. My stomach flips at the thought.

“Hannah!” The voice is angrier this time; it belongs to the one I mentally call Nurse Ratched. “Don’t touch!!”

“I was repairing it–” Hannah, who is in the mid-stages of dementia attempts to justify whatever it is she has done to get on Ratched’s rather broad bad side.

“You weren’t repairing it!” You were erasing it!” Ratched scolds.

“No, I–” Hannah tries again.

“Give me that!” Nurse Ratched commands. “Go and sit down!”

I have no idea what precipitated the exchange, but I often hears Ratched and her colleagues speak to residents like bad parents do their ill-behaved children.

“No Agnes, I’m busy. You’ll have to wait,” to the 96-year-old with rouge on her cheeks as she stands by the nurses’ station with her walker.

“You can’t have more now, you just finished one,” to rail-thin Diane who constantly opens cupboards in search of a drink.

“You’ll just have to deal with it,” when Elizabeth, who’s body seems to be tied up in painful knots, complains of not being able to breathe.

I know the kind of treatment Mom gets when I’m not there is the same kind I see and hear doled out to others when I visit. Worse than the words is the delivery: almost invariably in that tone. The one that would make you want to smack anyone who used it on you. It’s why Mom is being sedated for aggressive behaviour. She went beyond wanting to give them a smack; she went ahead and did it. Along with their memories and the ability to process things like the rest of us, people who live with Alzheimer’s disease leave social graces behind. They say what they mean and act how they feel, often to the chagrin of those on the receiving end of their frank comments and unfiltered reactions.

I put one hand behind Mom’s left knee and lift her foot onto the footrest with the other. Mom’s legs are full of bruises, bandages and band-aids; they stem the Coumadin tide. I repeat the process with the left foot, and then kick free the wheel locks. It’s 4:45 p.m.; dinner is at 5. The main floor dining room is next to the living room where Mom, Gaby and I have been for the last hour and a half drinking tea, singing songs and talking nonsense. Gaby left a few minutes earlier under her own steam.

Apparently, Nurse Ratched doesn’t know Mom and I are in the living room within earshot.

“Hannah! I said go and sit down!” she snaps again.

Meanwhile, Mom and I are in motion. We roll out of the living room and around the corner into the hall where 90-year-old Hannah’s back comes into view. She’s leaning on her walker about 15 feet away, next to the big white board on which the month’s activities are written: Tuesday afternoon: bingo; Thursday morning: sing-along; Sunday afternoon: religious service; “Phyllis’ birthday” has a green squiggle around it on the 28^th.

Nurse Ratched is a few paces beyond Hannah. “She erased the six from the 26th on the calendar,” Ratched complains, presumably to another staff member in the dining room; the reply to her complaint is unintelligible from where we are. Then Ratched turns around, and sees Mom and I heading down the hall toward her.

The transformation is astonishing. Ratched closes the gap between herself and Hannah, and, without skipping a beat, puts her arm around Hannah’s shoulder. She leans in gentle and close, and says just loud enough for me to hear, “It’s time for dinner my love, would you like to go in and sit down please?” Her voice is soft, golden, liquid honey.

I hold my tongue. I’m already in enough trouble. Mom and I squeeze past Hannah and Ratched and into the elevator bound for higher ground.

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Spirituality

a visit with the book of revelation

June 17, 2015June 17, 2019 My Alzheimer's Story

On June 16, 2015, Mom told me she was going to the creation. Fourteen months later, off she went,

~~~~~~~~~~~~~~~~~~~~~~~~~~

June 16, 2015: Communicating with someone with Alzheimer’s dementia can be frustrating. It can also be enriching, entertaining, and even educational.

Whatever Mom says, I try to go with her flow, improvise, and let things evolve as they will. I’m often amazed at her ability to articulate her thoughts despite her aphasia and the obvious challenges she faces when trying to get her ideas across.

It’s hard to know when she tells me stories whether she’s talking about the past, the present, or the future. Nevertheless, I experience many of our talks as her sharing a kind of intuitive wisdom I feel has emerged in her as her dementia has progressed. Yesterday when I arrived to visit she told me she was going “to the creation.” That blew my mind. “That’s a good place to go,” I replied as I rescued her from the recliner in which she was trapped. We got organized, and I wheeled her downstairs for tea. After our ritual walk across the room and back, we had another amazing conversation that went something like this:

“It’ll be all right once we get going, because I can tell them,” she said as she shuffled.

“Yes you can,” I agreed. We’re edging up to her wheelchair now. “Are you almost ready to sit down?”

“Almost.” We get to the chair and I maneuver her into place in front of it.

“You can sit down now mom.The chair’s right behind you.”

“Okay dear.” She sinks down gently. I roll her forward toward the sofa where I sit down facing her. We’re close enough for our knees to touch. I take her hands in mine. “Okay, we’ll get right down to what were going to do,” she says. “Because I don’t want to sit and fiddle around with those people.”

“I know you don’t.”

“I I I I’m ready to give them a…..a…a…” She takes an aphasia break.

“To give them what Mom?”

“Well to give them a little rah…rah…rah…rah…rel…rel…rel…rel…rel… revelation.”

“Revelation?” She surprises me virtually every day with something. Today, it’s her use of a multisyllabic word chock-a-block with meaning.

“Yeah. And I know what I can give them and that’s that. And that’ll be what’ll be given to them.”

“Yes it will be Mom.” I look into her eyes. She looks straight back at me. I think of the book I’m writing, and I can’t believe we’re having this conversation. More dementia intuitive clairvoyance. “It’s going to take some time Mom,” I say. “But I’m working on it.”

“Okay,” she approves. “I don’t want you to work too much on it. But I want to give the revelation. Because you can’t deal with these people you know.”

“Yes, I know that. Do you have any more advice for me Mom?”

“No, other than the, the, the, the, than, than, the, the, I don’t seem to have any more of the real rah…rah…rah…rah…re…re…re…re…revelation. I think we’re fine.”

I ask her how she feels about me telling the story. “Fine,” she says, and then she continues: “I told them, I said ‘Listen, I said, you you you you you you you made it a little bit difficult for me so you can you can you can spend up the things. You’ve got to, you’ve got to play the games with these people, because otherwise they don’t know what they’re doing you know.”

As far as I recollected, I’d never heard Mom use the word “revelation,” and if she ever had, surely not in the last several years. When I got home, I googled it. What I found knocked me for a bit of a loop. According to Wikipedia, revelation is “the revealing or disclosing of some form of truth or knowledge through communication with a deity or other supernatural entity or entities.” Dictionary.com defines it as “something revealed or disclosed, especially a striking disclosure, as of something not before realized.”

Next I visited the Wikipedia entry for the Book of Revelation which was a revelation in itself — all about apocalypse, prophecy, persecution, dragons and pregnant women dressed in the sun, the moon and the stars and much more. Powerful stuff.

What could I do? I was compelled to write this blog post before returning to my own book of revelation.

https://myalzheimersstory.com/2016/01/09/some-gods-write-plans/

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

https://myalzheimersstory.com/2014/03/04/alzheimers-alphabet-soup-is-a-sentence/

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Tag: listening

alex george fiddles “good-to-go” message from mom & universe

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

the beautiful tennessee waltz

Connie Francis (1959):

Patsy Cline (year unknown):

Emmylou Harris (1981):

Anne Murray (year unknown):

Bonnie Rait and Norah Jones (2007):

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

in the dead of the night

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

the looney tunes trio (unplugged): a late-stage alzheimer music session during which we rock

Subscribe to my updates and download free stuff here.

doing the right thing when everything seems wrong

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

yesterday if not sooner would have been better

yes mom, yes mom, three bags full

what it means to be or not to be

now you see me, now you don’t

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

a visit with the book of revelation

Subscribe to MAS now & get 5 free PDFs & a page of welcome links: