Cultural Soup

Happy PSW Day!

During the month of May both nurses and Personal Support Workers (PSW) receive recognition for the work they do. Today is PSW day. In my opinion they deserve recognition and heartfelt thanks each and every day. Cultural soup is just one small reason I give accolades and thank them as often as I can.

I was fortunate to have some wonderful PSW’s both women and men to help me care for my Bert both at home and in Long Term Care (LTC).

When I filled in Bert’s bio of his likes and dislikes I made special mention of his Dutch heritage. In particular I told each staff member: “He loves soups, especially Dutch pea soup and chicken soup.” I had already decided that I would provide the other Dutch treats he liked.

“Oh, that’s great. We can do that”. The response was unexpected until I was privileged to be with Bert at lunch. Pea soup and chicken soup days were special. Though I consider myself a quick learner, it took me maybe seven servings over 22 days to catch on to what I was hearing and seeing.

On pea soup day you can tell how many nationalities are in residence in the home area by listening to and watching the staff who are serving the soup. Pea soup day should be dubbed multicultural soup day. Ditto for chicken soup days.

“Mr. Bert, guess what the soup is today? Dutch Pea soup. Yummy.” There is an instant smile of recognition and you can almost see the drool. Before the bowl is placed in front of him his spoon would be in his hand and he was ready to eat.

“Hi Mama, guess what we are serving today? French Pea soup. Oh, this smells so good.”

“Come Papa please sit down. We made this especially for you. It’s Italian Pea soup. No, no Mama, come now, lunch is here and we have your favourite, Syrian pea soup. Yummy.”

There is one pot, one ladle, one pea soup with bits of ham floating in it. The soup comes in varied consistency, regular, minced or pureed based on the resident’s need but it is the same soup.

Somehow on the way from that one pot to the resident the soup morphs into the culture of the resident. My Bert is Dutch so he gets Dutch pea soup.

One day I almost fell off my chair as the following occurred:

“Hi Papa, your favourite soup is here and made just for you – hmmm a nice bowl of Syrian pea soup. Mama, sit here with your friend and have your special soup – Italian pea soup.

From the corner of my eye I saw another PSW frantically waving and mouthing ‘wrong country’. Both Papa and Mama who usually start eating as soon as they got their soup were not interested in soup that day. There was more frantic waving and mouthed ‘wrong country’. Realizing what was happening I went to the PSW, showed her the other who was in mid wave and whispered: “She’s telling you that you have mixed up the countries of Papa and Mama.”

Quick as a flash the soups are switched and a heartfelt: “Oh, I’m so sorry. THIS is Syrian pea soup and THIS one is the Italian pea soup.”

While I tried to strangle the laughter bubbling up Mama smiled; Papa picked up his spoon and both began to eat with relish. I had to squeeze my eyes shut as my Bert ate his last spoon of soup and said:

“That was good pea soup. Echte Erwtensoep (Real Pea Soup) Must be Dutch.”

Naturally, I agreed with him.

One of the earliest signs that a resident is not felling well is a lack of appetite, not wanting to eat. There is a great deal of time spent on feeding, ensuring residents eat and are hydrated. I could not help but ponder what a marvelous example of therapeutic lying this whole charade was. The resident was being cared for, encouraged to eat by finding links to pleasant times, perhaps a link to childhood happiness, being reminded of ‘home’, links to a favourite food that brought satisfaction.

The two soups that lend themselves readily to multiple cultural identities are pea soup and chicken soup. It seems every nationality has the perfect chicken or pea soup that’s uniquely theirs. It fascinated me that other soups were loved or hated. Cream of broccoli and tomato soup were generally liked or eaten without much fuss but there were others that could not make the cut. I have witnessed a PSW wearing a bowl of butternut squash soup that the resident expected to be a kind of South Asian curry soup. Then there was the other resident who with each spoonful of tomato soup spat it out with an accompanying: “That’s not Borscht!” Both these residents liked the South Asian chicken soup and pea soup respectively as served in the facility. They could also identify fake curry soup and borscht. They rejected the soups even though when they were served they were told what soup they were getting. Perhaps it was the colour of the soup that brought on the confusion? I will never know.

Multicultural soup was invented because the staff cared. Once everyone who could, were having their culturally appropriate pea soup or chicken soup staff could concentrate on caring for those who needed more direct hands-on help. A win-win situation.

The Meander: Kudos to PSWs for their care. In instances like this it’s not any kind of lying it is enhanced care with heavy doses of empathy and love. Thank you on this your day and every other day.

Note: Staff knows each person by name, but residents are often called Mama and Papa to establish the loving and caring relationships those words usually signify. I have used it here to protect the privacy of individuals and only my Bert’s nationality is the real one.

Finding Balance

This post should perhaps be called the joy of travel but I think my experience on my first cruise adventure without my best travel partner, Bert, was more about discovery and finding balance.

When Corbert, Amy and I sat down to discuss my resuming travel and cruising in particular, I was hesitant. Bert and I loved to travel and sometimes took ‘the kids’ with us. We all were bitten by the travel bug so wanting to travel again was almost a given. The hesitancy came from the fact that an important component, Dad, would not be with us.

We chose a South American cruise beginning in Buenos Aires, Argentina and ending in Santiago, Chile. There were a number of factors going for it. I would be able to introduce them to good friends in Buenos Aires and in Chile. In fact, I call them my Argentinean and Chilean families. Also I was going to attend a wedding in Santiago and once again I would be able to get close and personal to penguins.

All went according to plan except for the unsolicited visit from Bert to my birthday lunch in Santiago which I wrote about in my last post https://paulasmeanderings.com/birthday-tremor/.

There are too many highlights to record here but a few do stand out. My friends in Buenos Aires had booked tickets for us to Senor Tango a spectacular tango dinner show. It brought moist eyes as I remembered how Bert wanted so much to see this show with Corbert. The show ends with a stirring rendition of Evita: Don’t Cry for me Argentina, one of Corbert’s favourite songs. When it came up, memory brought a few tears.

It was a pleasure to take them to lunch at the same pub on Stanley in the Falklands where the fish and chips went down easily. On our two previous visits Bert had declared it was the best fish and chips outside England. Then again he said that in Christchurch, New Zealand too!

Sailing around Cape Horn can be hazardous to your health. That passage is one of the roughest you can encounter. As a result, many have been on this same voyage and have never been able to get into Stanley Harbour. The cruise gods must like us as we had smooth sailing.

It was a pleasure to see both Corbert and Amy just taking in the beauty, the history and absorbing the experience as it unfolded.

In Santiago we had our own private tour guide. My friend, Paty, owns her own tour company specializing in the history of her country and wine https://wineweintours.cl/ She is the best.

However, it was the intangible that resonated most for me. Something happened that was unexpected. From the moment I stepped on to the airplane for that first leg of the flight to Argentina I experienced a lightness, a freedom to exhale, to breathe. I did not know I had been holding my breath for 11 years! I did not know how totally consumed I was with a disease, and with the burden of care.

I was so focused on doing and living for two and so angry at a disease that I had lost myself without even being aware of it.

I am weaving a different pattern. It’s not all happy and carefree. It never will be because there’s a part of me that’s missing. Yet there is now room to step away from the disease. I see myself as the conqueror not the vanquished. Alzheimer’s did give me my third age advocacy issue but it will not become the only issue. I now have time for me.

The Meander: Friends call. Travel calls. Cultural pursuits and social events call. Family takes the top position. I am ready to answer. Of course, I’ll be busy because I want to be and as the blog byline states: Standing Still is Not an Option.

Birthday Tremor

I survived the 2010 earthquake in Chile. The epicenter was in Concepcion only 200 kms from Santiago and measured 8.8 there and 8.5 in Santiago where we were spending the winter.

Today, Tuesday March 21, 2023 I woke up early and watched the sun rise over the Andes from my bedroom in Curacavi, Chile. Utter bliss. I am staying with friends. My birthday comes after an Antarctic cruise and before a wedding on Friday.

After breakfast we are going to pick up my friend’s daughter who is flying in from Barcelona where she lives. I have not seen her in almost 12 years. She was no longer a teenager but now an architect and though looking more grown up and more sophisticated seemed the same young girl I knew and loved. It was the same feeling I had when I met her brother and his wife a few days earlier. The years fell away in a long exuberant hug.

Now here we were at grandmother’s home to welcome her and to celebrate my birthday. There were 10 of us, members of what I call my Chilean family. We had demolished the laden table of food in the living room, the appetizers, and were now seated at the dining table also laden with food and making fast work of that too.

Now it was time to sing the birthday song. Of course, we had to have both versions sung in two languages. First up Cumpleaños feliz then Happy Birthday sung loudly and somewhat slightly off key under the influence of a variety of the ever flowing wonderful Chilean wines. Salud!

I smiled my thanks, raised my glass and as I lowered it to the table there was a slight shake. Then another followed which was just a tad harder. Puzzled, I looked up and saw the flowers in a large vase do a slow waltz. OMG an earthquake! Shades of 2010! I grabbed on to the table as if I could stop it from shaking. Please, I do not want to go through another 8.5 earthquake in Chile or anywhere else for that matter, I prayed. A third bigger shake rattled the dishes though not a drop of wine spilled.

I was terrified but aware enough to look around. Hard to believe but here was what registered. One lovely woman used her fork to delicately stab another quail egg and pop it into her mouth. The men were muttering something about ‘only a small tremor, no problem’. I was pleased that my Spanish was working enough to understand it all.

Then another speared a cherry tomato and reached for the crudités with the salmon coloured dip. My beef empanada was cooling on my plate as I refused to let go of the table.

Two men and a woman went to the balcony to see what was happening to the water in the swimming pool. Don’t ask. I didn’t. Grandma stretched out her hand gently stroked my hand.

My dear friend was watching the other vase of flowers doing a lazy dip and fall back salsa routine. Another calmly, nonchalantly sipped his sparkling wine savouring it with obvious pleasure. I looked up at the chandelier and silently begged it not to come tumbling down as the crystals played a tinkling tune as it swayed and shimmied. Then with a last shudder things stopped moving.

It’s over, only a little tremor. No problem. That was the general consensus. They checked into the earthquake website or whatever it is called. The report said an earthquake measuring 5.1 occurred in Santiago and environs.

By that time everyone, except me, was back to eating and drinking. Still tremulous I picked up my empanada again. I was not yet quite back to normal but laughed, perhaps with a bit of hysteria when one suggested that Bert had come to visit and the little tremor was his special birthday greeting to me. That was what I needed to be calmed, helped along in a large part by my third or fourth glass of wine. As the talk turned to Bert I reflected on the many amazing birthdays I have had: bonding with elephants in Sri Lanka; celebrating Nyepi in Bali; going over the Andes from Santiago to Mendoza, Argentina, and so many more!

This little birthday tremor will join the crowd as being very special. I was surrounded by friends, enjoying Chilean wine, eating food that was prepared with love, being serenaded in both Spanish and English versions of the birthday song, and a visit by Bert in the form of an earthquake which somehow was typical and fitting. With a sigh of relief and in serenity I went back to my empanada.

The Meander: The entire trip was a celebration of LIFE.

“For everything that lives is Holy, Life delights in Life”. William Blake

Morning Shock!

Did I hear that correctly? A 19 year old has been diagnosed with Alzheimer’s? I was shocked. I immediately thought, well, okay this is obviously a case of Early-Onset Alzheimer’s but I had never heard of one beginning so early. The next thought was that the cause must be genetic. Another consideration was that he must have been engaged in dangerous activities that damaged his brain. I remained skeptical wondering what kind of activities could maintain that amount of continually repeated head trauma to one only 19 years old to result in a diagnosis of Alzheimer’s. It did not compute in my unschooled brain.

This I had to check out and was led to a Study in the Journal of Alzheimer ’s disease which gave details of the case.

The confirmation added a profound sadness to my shock. Here was a young man on the cusp of manhood whose life, hopes and dreams were all ahead of him now stymied by this deadly disease. Instead of moving forward to a bright future he would now be regressing to the inevitable end. Would he live long enough to receive the first known cure for the disease? The more immediate question is would he be able to take advantage of any cure that may emerge given the unpredictability of the progression of the disease?

General opinion is that only old people get Alzheimer’s. It should be noted that old age is not a cause of the disease but one of the markers. The older you get the more susceptible you are to contracting the disease. Early-Onset usually refers to those who contract it at younger than 65 years of age. But being diagnosed at 19 is rare, actually non-existent until this case.

I thought of the parents. If your child complains of being forgetful at age 17 Alzheimer’s would be your last thought. Any number of issues facing a teenager could be the cause of the laziness of the brain. It could be a growth spurt, suddenly raging hormones, lack of sleep or perhaps a creative excuse for a bad report card. None of these seemed to be a factor here. I would guess that a pediatrician given this symptom would not have Alzheimer’s top of mind, if at all. It took two years for the diagnosis of probable case of Alzheimer’s to be diagnosed. What was more frightening was that there were no markers to indicate that this was caused by genetics, a more acceptable and plausible explanation.

No doubt this teen will be studied in minute detail, every change in his behaviour scrutinized to the nth degree. His parents will not only have to grapple with the diagnosis but also find the empathy and strength to watch as he becomes a human guinea pig. As critical as it is to find out how this adolescent contracted the disease it will also be an agony for them to see the slow deterioration and watch as researchers learn from him.

Alzheimer’s has stretched out a long arm to touch a teenager. In so doing we must rethink the pathology of the disease. I have felt deep sympathy for fellow caregivers whose spouses died at 47 and 52 years of age. The feeling is that they died much too young and that was after living with Alzheimer’s for a number of years. I could empathize. I could find words of comfort as I went through my own caregiver’s journey. What do you say to a parent whose teenager has Alzheimer’s?

I hope these parents will record and celebrate the moments of joy that come with living and caring for a loved one with Alzheimer’s.

The Meander: On behalf of all persons living with Alzheimer’s and their caregivers, a big thank you to the parents of this young man. I hope their love and sacrifice and some diligent research will result in a positive outcome that advances knowledge and greater understanding of the disease. I also want to remind them that they are not alone.

The Novelty of Widowhood

It is a New Year and there is so much that’s new. I have a new schedule. I have a new life of living without another, the one who had been partly absent, but only partly.

Most bewildering is the new ID. I am signing documents that ask for my marital status. I hover over Married then move to Single and then uncomfortably to Widow. I place a tick as the status is officially correct, officially.

I have no problem with the word widow. The hesitancy comes from the fact that for such a long time I was a widow in waiting or in training but now that it is a fact the training turns out to have been woefully inadequate. How do you own a state of ever mutating feeling?

It has nothing to do with living alone. I passed that test long ago. Yet somehow it was incomplete because he was still here. He was less present than before but much more than total absence.

I am beginning to think that I have major fault lines that need mending. Family and friends remind me that the ‘Firsts” are stressful, demanding and catalysts for deep mourning that may resemble depression. I am told to mourn, to grieve and take time to BE. I understand, yet somehow this widow identity has so far been the worst issue in the process for me. How trite!

The first Christmas has come and gone. Children and friends made it beautiful if poignant.

The first New Year’s Eve has flown on the wings of memories that are full of laughter and quiet aloneness but with comfort and feeling of still here. He remains a gift that keeps on giving despite the absence.

Anniversary number 54 was spent enjoying dinner and a theatre performance in the company of friends who are another type of family. The two ‘widows’ knew the muddle that resulted in the tickets for the performance and the anniversary date being the same was no mistake. In our hearts we knew the two friends who are no longer here made that choice for us. They decided this first, this gathering would be to celebrate, not mourn.

There are many more ‘firsts’ to come. Somehow I am able to think that those firsts will only become days to remember on the personal calendar. That personal calendar has many firsts from other losses and triumphs. I am so grateful that there are many more dates to celebrate than to mourn.

When we meet, let’s talk about the happy memories, the firsts which can be met with equanimity and remember that sometimes death can be a gift of love.

The Meander: Let’s greet each other with love and cheerfulness and for heaven’s sake don’t call me the widow Paula!

Reposted from The Good Doctor

Thank you to “the good doctor” for this endorsement! If you wish to keep up with this blogger you may follow him at: https://www.burlingtoneye.ca/TheGoodDoctor Here is what he wrote.

Blog vol 3. 33. Dealing with Alzheimer’s Disease, Some Encouragement.

At her recent visit, Paula De Ronde, a patient of mine, brought me a copy of the book she has written, My Bert has Alzheimer’s: Caregiving is Living for Two. From 2011 to 2022, Paula was the caregiver for her late husband, Bert. She wrote down her meanderings and compiled them in a book that really captures the daily demands of being a caregiver.

Two words come to mind as you read Paula’s account: intensive and love.

Intensive – the day-in, day-out demands of being a primary caregiver, and then the community of peers and local day programs helping to share the load. The underlying thoughts throughout the entire account are the preciousness of Bert’s life and his loving relationship with Paula. One of the most beautiful moments in the book is when the day program staff sets up a date night for the couples in their care. Every detail, from invitations, decorations, menus, lighting, music, serving, then, later dancing, was done with such attention and care. Just wonderful, so inspiring.

Love – the relationship between Bert and Paula deepens through the disease. Paula’s desire to learn as much about Bert’s disease as possible in order to help him (and a lot of others) shows the depth of her love. I was especially impressed with Bert’s tender heart and love for his wife, even as inhibitions came down with the development of the disease. Bert, you are my inspiration, I hope I can be that man under similar circumstances. The love of others was expressed in real and tangible ways: the way that the PSWs (an under-appreciated group) helped Bert as he entered the long-term care facility, the daily care of looking after Bert and actively involving him in the daily routines of toiletry, dressing, feeding, and so much more.

Her tone in the book is upbeat, her sense of humour contagious. Paula has done a great service for caregivers in encouraging, educating, and especially, sharing her journey.

So many people are caregivers to spouses with Alzheimer’s or with other health concerns. This work is so important and so difficult. I am continually impressed and humbled by my patients who persevere in caring for their spouses through really heart-breaking situations. The love and care are wonderful to see.

The rest of us need to remember to support the people in these situations. We can make such a difference in even small ways.

If you would like to keep up with Paula, you can follow her meanderings at: https://paulasmeanderings.com/.

til next week,

the good doctor

The Meander: Unsolicited commendation and support encourages enhanced advocacy. This is much appreciated!

Christmas 2022

What a year!

It was too short; it was too long

It was too busy; it was not busy enough.

There were tremendous highs and the deepest lows.

All in a single year.

New IDs – Author. Widow. Honouree 100 ABC Women.

A disease gave new direction.

Love conquered.

May you have a wonderful Holiday Season whatever your celebration may be.

May your New Year be filled with new Hope, more Light, unconditional Love and PEACE!

Muted and Fading

The wheelchair is in the usual place beside the window. The view is the same. It is that very narrow slice of the world comprised of the patio, the gardens, over the street to the restaurant, a parking lot and backyards. The passing vehicular traffic provides the only change in scenery.

Walking up to the wheelchair I see my Bert, head upright with eyes closed but not asleep.

“Good morning my darling. How’s my Bert today?” The eyes open slowly. I smile and a tentative smile is returned. I whisper “I love you” close to his ear and he nods his head.

My Bert no longer utters even one word. He no longer speaks. The man who would laugh when I told him that one formula for our happy marriage was that he talked and I listened is now muted.

I begin to describe the scene in front of him as with advancing macular degeneration I am not sure that he sees even that narrow world with any clarity. He reaches for my hand and then we play the usual game. As I try to take my hand away he tightens his grip. He smiles when I cannot get loose but this game is no longer usual. There was a time not long ago when I had difficulty loosening his grip. Now I am half pretending. I still my hand and he hangs on now rubbing my thumb up and down, up and down.

He has said nothing. He is permanently muted.

The birthday balloons are still hanging by the window. They hover half-heartedly. I had wanted to discard those two weeks before but when I told him I would put them in the garbage my Bert shook his head.

Today as I look at them and see the slow seeping out of the gas, look at their wrinkling softness and see them drooping towards the ground, I see them as a metaphor for my Bert. He too is losing his gas, his vitality; he too is wrinkling, shrinking and losing weight. He too is losing strength and settling into an unhealthy softness.

I am seeing Alzheimer’s Bert today. The disease is taking my Bert. He does not walk, he does not talk and he lethargically succumbs to having everything done for him and to him. He understands when asked to open his mouth for the next drink or spoonful of food. He nods, he shakes his head he clamps his teeth when he does not want to eat. He is not eating well anymore so he gets meal replacement supplements. He drinks better than he eats. I am grateful for that.

I find that living in ‘smalls’ is becoming more important as the ‘smalls’ are getting smaller. Just six weeks ago the small joy was the brightening smile and the shout “That’s my wife. That’s my Paula” as I entered the room. Now it is that tentative smile and the holding of hands.

I am getting used to Alzheimer’s muted Bert. I am getting used to Alzheimer’s Bert who can hardly keep his eyes open and the Alzheimer’s Bert that is the epitome of weariness.

I sing to my Bert and show my love the best I can. I overreact at the smile, the nods, the eyes that open one at a time or together. I praise a clean plate and emptied glass. I compliment his attire, his hair, his clean shaven face, his smile.

And I grieve.

My Bert is fading.

The Meander: I am beginning to wonder when enough is enough. The heart and the mind are in a constant battle.

MEET THE AUTHOR (Come say hello, if you can)

AUTHOR SIGNING EVENT

Indigo Books Burlington Centre – Store #977

777 Guelph Line

Burlington, ON

905-639-8860

September 25, 2022

11-5pm

90 Going On 2

I asked Alzheimer’s: “Is this the last birthday?” It did not answer. There are some things even more mysterious than Alzheimer’s and beyond its reach.

Going on two is a misnomer. The reversal of life that is a hallmark of dementia means that the operative words are ‘going on’. A two year old child is more animated, more rambunctious, more vital, more mischievous and more aware than my Bert. Yet all those adjectives are applicable to him too. Add strong, resilient, great teaser, fun and you get an idea of my Bert the old man/child – when.

August is the busiest birthday month. There are more birthdays to remember than days in the month. There is one particular day which has four birthdays.

August is special too, as the two most important men in my life are both August men, both Leos and both precious. They are my husband and our son.

August 2022 is noteworthy for my husband as he celebrates his 90th birthday. To mark the occasion 15 family and close friends gathered for lunch. The food was good, the company great, the conversation flowing and the focus all on my Bert.

It was a far cry from the blockbuster parties of years gone by because my Bert is 90 going on two. Alzheimer’s is to be blamed for that cruel reversal. The voluble, smart, life of the party, consummate host, charming Bert is almost mute. That’s aphasia. Just three weeks before he was talking up a storm but as that darn Mr. Murphy and his law would have it, he had lost the art of speaking by the time his birthday came around. He still says the odd word, with coercion, but you now notice the difficulty of pronunciation and how at times what he wants to say comes out garbled and sounding strange.

He nodded, he smiled, he understood. He did not go to sleep, nor show disinterest. He played with his niece, our son and daughter-in-law and held on to all hands. He still has a firm grip. He remained alert yet it was a day that he was more Alzheimer’s Bert than my Bert. I hope I was able to hide the sadness.

The man/child was happy as the birthday cards came out. There were cards that sang, talked, cards with dogs in a conga line, cards which lit up, 3-D cards, cards that popped, unfolded and were filled with pictures and photographs and other conversation starters. There were helium balloons that now decorate the sliver which is his world. They will remain as long as they are afloat, withering away slowly, fading, losing their substance and drifting to the ground, mirroring the slow decline and loss of heft of my Bert.

At 90 every day is worth a birthday celebration.

At two you are allowed to be happy every day looking forward in anticipation for what comes next. The future is before you. The sky is the limit.

At 90 my Bert lives just for this day. The present is always the only now and it is fleeting.

The Meander: Happy Birthday, darling. What a wonderful life. Your past is filled with amazing memories that you no longer can recall. No matter, I’ll remember for you.

It’s an Interview

Thank you to author Cynthia Reyes who interviewed me for her blog.

Cynthia is a former television journalist, trainer and executive producer with the Canadian Broadcasting Corporation and a master gardener.

An Interview with Paula de Ronde

July 12, 2022 Cynthia Reyes

Paula de Ronde dreamed of writing a book – but never this book.

Q: You were a senior librarian with the Toronto Public Library. What is your relationship with books?

I love books. I am in love with words. Reading has been my number one pleasure all my life. Still today I wake up with a book and go to sleep with a book. It’s more than a habit, it’s me.

Books are gateways to the world. They provide the greatest pleasure anyone can enjoy on their own, or with family, friends and a community. Books are for information, recreation, education. They transform, inspire and transcend the mundane.

I wanted to be a librarian to put people and books together for them to discover the world and the knowledge in it. An informed society results in a more compassionate society. Knowing this led me to my added advocacy work on behalf of libraries and their value to their communities.

Q: What made you write this book?

No one is prepared for this diagnosis or to be a caregiver for this particular disease. So, given my background, when those fatal words were uttered I donned the librarian’s hat and instinctively knew who to ask and where to look. As I found information, sorted out help and support, read others’ accounts of the dementia journey and experienced the convoluted Alzheimer’s world, I realized that I needed to share the information. A dementia diagnosis will always be an ambush but may be less traumatic if you are aware of where to find help. This is a situation that begs for help, professional help and appropriate community resources.

I also wanted to support, enlighten, educate, guide and most of all give as positive a take on the disease as I could based on our own experience. The more I learned about the various levels of help, the less traumatized I felt. Peer support was invaluable.

Caregivers face a life sentence of 6 to 20-plus years. Those years spell sacrifice and a dramatic change for at least two people. Your loved one has the disease but it affects you just as much. So the caregiver must carve out a life that lasts for that sentence. Being informed of what is ahead will help you plan to live with as much joy as can be had.

Q: Your book reveals the daily challenges and joys of a caregiving relationship between a wife and her beloved husband. What’s been the toughest experience/challenge and what’s brought you most joy?

The disease is a tragic comedy and sometimes the comedy is more evident than the tragedy. It has taught me to live in and out of small. Once you accept the fact of the inevitability of this disease’s trajectory, with death always hovering, you begin to notice the small things.

The irony? The toughest challenge and joy may come from your own memory.

I did not recognize how much I was grieving until the day my Bert entered the living room half dressed in pull-ups ready to watch a video with me. This was my rock, my knight, the proper gentleman whose purpose was to make me happy. My Bert is my greatest fan, my encourager, for whom I could do no wrong. Here was my partner in joy and sorrow. I looked at him and knew that Alzheimer’s was taking him from me and I grieved.

Another enormous challenge was accepting the fact that my Bert would end up in a Long Term Care facility. It is perhaps the most gut-wrenching decision a caregiver ever has to make.

What has brought me most joy?

I am not sure I have experienced the greatest joy as yet. Here again memory is most evident. Our travels are amazing. Our life experiences both good and horrible are over the top both before and now during this journey. As the disease progresses we have learned to look at ‘small’ and take the moments of joy that come in the most unexpected ways. It is the days my Bert looks at me and in the midst of chewing says: “I love you very much.”

I smile as I remember the counselor from the Society who just held me tight when in tears I asked: “Have you ever had a client rail at the fact that she could not stand one more ‘I Love you’ from her spouse?”

It’s the little wave I get as I enter the home and the loud ‘that’s my wife.’ It’s how he remembers our son and daughter-in-law and the familiar gestures he makes that confirms the memory. It’s laughter. Oh, how we laughed with our friends and family and still laugh. His spontaneous gift of laughter is always evident. His innate chivalry is intact.

It’s the fact that the disease may be taking away my Bert’s personhood but not his character. My Bert equals joy.

Q: What do you think Bert would say/feel about your book, if he could?

I have read a few paragraphs to him and he will say something like: “That’s me? My head is not right.” I read the happy parts and those that refer to his past in The Netherlands, the war, his siblings. He has for ages told me I should write a book and he likes to hold it. I am grateful that once again my Bert has been the enabler for another of my dreams. I am so deeply sorry that he does not know that he is the star of what he holds in his hands. If he understood he would be out declaring to the world that I am the greatest writer that ever lived!

Q: Memoir writers often contend with the issue of privacy – what to put in, what to leave out. How did you resolve it?

It took some doing but once I decided to put our story into print, the motivating factor was that it had to be real — truthful, unencumbered by too much modesty and recorded in a way that illustrated the good and the bad. There were parts I did not have to include as just saying the words dementia or Alzheimer’s brings up certain pathologies of which even the uninitiated are aware.

However, there is no getting away from some private moments being put ‘out there’ especially when the dynamic duo are spouses. What was important was that in sharing our story I hoped to provide credible and helpful information to readers and to do that I had to share the whole story.

Q: You have a way with words. Is this your first book? If so, what took so long?

Like many, I have been a closet writer for a very long time. I have a collection of bad stories, poetry, extended stream of consciousness articles plus travel journals that I visit and cull maybe once every five years. I write every day in a journal. The truth is that I suffer from imposter syndrome especially after I have read a good book. Yet even as I denigrated my own writing I was aware that good writing is simply a good story.

Writing throughout this journey is my therapy but more than that, I wanted to spare others, to ease the journey just a little by allowing them into my own story, to introduce the tools that worked for me and perhaps can work for them with a little tweaking to fit their particular situation.

Now that the genie is out of the bottle I can’t wait to do another book. Did I say that?

Paula’s memoir, My Bert Has Alzheimer’s, is widely available through online booksellers and at A Different Booklist in Toronto.