Alzheimers - Meanderings

January is Alzheimer’s Awareness Month.

On New Year’s Eve I wrote some thoughts on the sacrifices caregivers caring for persons with dementia must make as they care for their loved ones.

No matter how much you give you are called upon to give more. Alzheimer’s is a disease that takes. As a caregiver you give.

I share my thoughts here:

MORE
We never know how much MORE we can be

The greater the challenge the MORE you find

You can be MORE

You never know the depth or height of being until

You are tested to be MORE

When you know you have reached your limit

You discover the unknown MORE

Trust your MORE

Be bold in your MORE

Speak your MORE

To help others

Find their MORE.

The Meander: Thanks to those wonderful care partners, the Personal Support Workers (PSW) who everyday wherever they work give MORE.

The Final First: Love Endures

How Do I Love Thee? (Sonnet 43)

Elizabeth Barrett Browning 1806 –1861

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of being and ideal grace.
I love thee to the level of every day’s
Most quiet need, by sun and candle-light.
I love thee freely, as men strive for right.
I love thee purely, as they turn from praise.
I love thee with the passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints. I love thee with the breath,
Smiles, tears, of all my life; and, if God choose,
I shall but love thee better after death.

For 53 years the couple would awaken and read or recite or hear a friend saying these immortal words. It was a January ritual begun on the first wedding anniversary.

On January 11, 2023, in love and remembrance only one mouthed the words in the cold morning. It was comforting.

Today, September 25^th is a day that should have no special import but from now on may be a day for mourning, or not. On waking, the first thought, the first need was to hear this poem. The accompanying memory was of a soft slow issuance of breath, an afterthought it seemed. That breath came after a long pause and seemed to linger as it floated outward and upward and returned on the gossamer wings of a butterfly to settle with a soft caress. My Bert smiled. It was the final, soundless aspiration that filled the room.

But today is a day to put aside maudling sentimentality and contemplate present reality. Today marks the first year of living a strange unfamiliar singleness.

It was a poignant year not of mourning but of doing. Too busy advocating, informing, educating, sharing, caring, remembering, living. There were a few tears outweighed by a plethora of remembered joys. Tears wiped away within the ever surrounding arms of family and friends.

Today I meander through our song, gaze at albums, twinned biographies, and I laugh at our shared moments of joy or sigh at our shared moments of grief and wonder at the miraculous journey of two lives entwined.

And today I share our love poem with friends, families, all who love and mourn and remember their loved ones who are gone but have not left.

The Meander: Love endures. There is an everlasting delicacy in loving someone after they are gone. There is blessing in memory.

August 17, 2022 No Regrets

We wheeled him across the street. One helium balloon already declaring in bright, bobbing shiny proclamation: “It’s My Birthday”.

He was well dressed. I was told that when he was asked what he wanted to wear he had only said: “Blue”. He was dressed in a lovely blue shirt, gray dress pants and dark blue slipper shoes. He was well groomed having just had a haircut five days before. He smelled nice.

Destination was the Italian restaurant a short block away. All was ready including the 14 guests that would celebrate this special day.

“How old am I?” The voice was tentative, slightly raspy, low and slow. The once talkative man was showing the ravages of Alzheimer’s and the onset of aphasia which began just two weeks before. The rock had become shifting sand.

“Today you are 90 years old”. The still bright eyes opened widely and the ghost of that most beautiful mischievous smile broke through. “That… no, you 90 too?”

There was laughter.

There was laughter as a favourite niece got him speaking German, and Dutch then it doubled in volume when he answered in Swedish.

The food was great, the conversation lively and the 90 year old man was happy to be the VIP, the celebrant, the focus of all around him.

A conglomeration of cards, balloons, flowers, odd items surrounded his plate. There were pop-ups, noise makers, puzzles, musical renditions of the birthday song all coming from the cards, gifts and trinkets. More helium balloons decked his chair, tied to show off the witty sayings displayed on them.

He did not say much. Each question was passed on to his wife with: “You tell them”. When she answered with an encouraging word or mnemonic aid to have him join in answering he would nod or say one or two words. And he smiled.

It was a very happy occasion and for three hours his usual tiny sliver of view of the world became a whole pie. He ate. He drank. He smiled. He saw the entire street. The cars, the bus, the gardens, the small plaza were seen at earth level, not from the constricted view from his third floor window.

Those who had not seen him for a while marveled at how well he looked. He reached for my hand and held it even as I fed him.

There was a parade going back to the home. It was a celebration.

His place at the table was crowded with his birthday gifts so some had to go into his room. The noisiest, brightest, most comical pop-up cards were shown around to his companions in the room. Flowers were on the window sill. There was no guessing who the birthday guy was as his chair was festooned with the bright helium balloons. Many came by to look and those who could, chatted, touched, stroked and wished him a Happy Birthday. Then everyone had cake with tea.

“Okay sweetheart. See you soon”.

“Bye, my Paula, soon.” It was the clearest he had spoken all day. He was my Bert.

August 17, 2023

It could have been bleak. It was not. It was filled with happy memories and I was happy to recall the last birthday party. We had no idea then that in 39 days that world view would expand to encompass the entire universe. None of his guests knew then that the next time they saw him would be for another celebration, of a life well spent.

This year his birthday party is with the stars while I was treated with lunch at a friend’s home. There was love, and I marveled at how much the world, life, business, pleasure, sadness and joy, like glass in a kaleidoscope, shifts and reassembles as you adapt to a new reality.

We walked down to the lovely creek that meanders through the property. There has been so much rain it is the fullest I have seen the water. It had risen to be lapping at the footbridge and as it rushed with musical notes to the lake it seemed to say: “You done good, girl”.

The Meander: Yes, I have.

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.

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.

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.