#caregivers - Meanderings

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.

Lucky?

It is International Women’s Day. I am in my car and the radio is playing in the background. It is all about celebrating women today. In the usual banter the female host asks the male host about the women who have been important in his life.

There is a slight pause before the host begins to talk about his family and he focuses on a great aunt who raised his mother. From his words you knew that this woman was the backbone of the family and that she held a special place in his heart. He said the worst thing he ever had to do was to eulogize his great aunt. He went on to say that she lived to a ripe old age living out her last years in a Long Term Care facility.

His next words were that they were ‘lucky’. The facility was a “good one, thank God.”

I cringed.

In a letter dated December 18, 2020 I wrote to Premier Doug Ford, Hon. Merrilee Fullerton the then Minister of Long Term Care and copied to a number of organizations relevant to Long Term Care. In it I identified a number of issues and concerns and wrote:

I am fortunate, feel very lucky and blessed that my loved one is in a good home. Yes, sir there are good homes but what is wrong with that sentence? No one chooses or wants to be in LTC. They are there because they need to be and I believe that everyone in LTC should be able to say that their loved one is in a good home without a preface of ‘feeling lucky’ or ‘fortunate’ or ‘blessed’.

I still preface or expand my description of my Bert’s home using those same words and each time I have a sense of discomfort. Every person who needs to be in a long term care facility should be in a good home. It should be a given. Standards of care should be the same, no matter where you live or who you are. No one should be dependent on the luck of the draw to be able to spend their last years in a good home.

The Meander: I am glad that lovely woman was in a good home. How I wish all residents in long term care facilities were in good homes.

Lasts

It is Corbert and Amy’s wedding anniversary. I smile as I sign their card. I blithely write that it is from Dad and Mom. The smile fades. In its place is not a frown but a hesitancy, a new kind of indecision wrapped in doubt and some wistfulness. The question intrudes: “Will this be the last time I write Mom and Dad?”

I send a birthday card to a niece and write, with a flourish, from Uncle Bert and Aunt Paula. Another goes to a friend and again from Bert and Paula.

Birthdays, weddings, anniversaries, sympathy, condolences, get well and thank you cards were under my list of duties and all of them were signed by me for two. It was always from two.

It is the little incidents of thought, reverie, a shiny object, a souvenir and the simple signing of a card that can bring about an extreme sense of loss. All of a sudden I began to wonder about lasts. The last hello, the last and final goodbye, the last trip to the Home, the last hug, the last farewell to the staff, the last pondering of how to acknowledge the care given to my Bert.

We sit at my Bert’s table looking out his window. A slight gust of wind and the canvass awning on the nearby balcony rises and falls. My Bert looks out and says: “The wind is strong. Look.” The wind and the movement of the awning always bring some reaction. I wonder when it will be the last time for this.

What will be the last programme we share, the last pub night, the last musical presentation? Will I be holding his hands? When will I see that last smile or hear the last: “I love you too.”

Lasts are roiling in my mind. I contemplate the last hair cut, the last foot care, the last grapes I bring to him. That brings to mind the last food he will eat and I wonder if it will be regular, mince, puree, liquid or gel. Even food foretells the decline to the end. Should I ask that his favourite foods make up his last meal? Will the last meal be regular or potage or the drip, drip of a colourless liquid?

We sit on the patio and I make sure he is out of the sun. My Bert does not tan well. He goes from pale to lobster red and back to pale quickly. I put some sun screen on his hands and wonder: Is this the last time? I glance at the rose bush which is coming out strong and already I can envision the lovely yellow roses that will bloom soon. It is a beautiful bush and again I wonder if this will be the last time we admire it together.

I shake myself out of morbid thoughts and try to substitute happy lasts. For the life of me I can’t think of any. Last of anything is a precursor to an end. In the effort to move away from sadness I find I must move away from the lasts that involves anything to do with my Bert.

Forcing myself out of morbidity I immediately think of a last that I will welcome. Oh, how I will welcome the last day of Covid-19. What a celebration that would be when not just first world but the entire world is free of Covid-19? I am not sure that is possible but one can hope and dream.

What a conceit it is to think of the lasts with my Bert as being comparable to a world pandemic. Yet I think that the sheer enormity of both makes the comparison reasonable.

As I try to conjure up happy lasts I find myself reverting to endings. It seems that there are many more endings that are sad than happy. That should not be. Yet I see happy endings as fairy tales. It must be the mood I am in, the burden I carry, and the onus that sits constantly on my shoulder to be happy for my Bert. Now I appreciate how much I depended on him to enhance our natural joy. He carries so much joy in him. It is infectious. As I remember his wonder, his happiness in the smallest thing I know I have to try to maintain that childlike magic he has.

It can be wearying being happy for two.

It is Father’s Day. Along with a few gifts my Bert has received four cards. He has eyes for one card only. It is from Corbert and Amy and features his favourite pet, a dog. It is special. When you pull a tab the dog talks. It begs him to have a Happy Father’s Day, asks to be thrown a bone, pants and again the Happy Father’s Day wish.

The card is shown to every staff member; my Bert cannot get enough of it. I finally succeed in teaching him to pull the tab and he is delighted to hear the dog ‘speak’. He takes it with him to the patio. He has so much pleasure in this card that I find myself laughing along with him. He is so animated and pulls the tab so vigorously that I know the card won’t last long. That won’t matter. For now he is happy. When the card is pulled to pieces he might ask someone to fix it, but in a very short time he will have forgotten it. That does not matter either. We live in the moment. Take pleasure in the moment.

Yet still I wonder? Is this the last Father’s Day?

The Meander: Like floaters in the eye the worry about lasts hovers constantly but unobtrusively in the background. You almost forget they are there. Almost.

A Precious Gift

It was almost two weeks after my Bert and I had been apart that I got a call reminding me of an appointment. It came from someone I consider to be a friend though I met her only because my Bert has Alzheimer disease. As we confirmed the appointment she ended by saying: “I will also be bringing a special gift for you.”

“Oh? What is it?

“I cannot tell you. It’s a surprise.”

I was curious. I like getting gifts. Who doesn’t?

The day arrived. My friend came in with a big smile.

I had waited in anticipation so after the hugs and the greetings I said: “OK, what is it?”

“This is a gift from your friends at the Adult Day Programme. It is a CD of Bert and the music therapist singing Paula’s Song. They worked together and Bert helped her with the words. He insisted on some of them and with a bit of coaching and patience they made up this song for you. They recorded it. You can hear Bert singing on it to you. It truly is from him to you.”

She handed me a CD case. On the cover there is a wedding picture of Bert and myself. There is a white column on the left that says “DEAR PAULA”. On opening the case there is the CD with the title “Paula’s Song”. On the left hand side behind the photograph are the words of the song. It is a familiar tune.

Chorus

You are my sunshine, my only sunshine,

You make me happy when skies are grey.

You’ll never know dear how much I love you,

Please don’t take my sunshine away.

She’s always happy, my beauty lady

We stick together like a lock

You make me happy, oh dear Paula

I do love you oh so much

Chorus

You’re always with me my favorite person

We have travelled all the world

You’re always smiling, and you are happy

You bring joy to all of my world.

Chorus

Sometimes, love, the world ain’t easy

Please take care and watch your step

Don’t go out late, love, and please be careful

I want you safe and here with me.

I read the words. Tears trembled on my cheeks but did not fall. Through my blurred vision a voice heard in my heart told me this was from my Bert to me. These were his words made coherent by a music therapist who concentrated on his love and with patience got him to articulate it in this, my song, Paula’s song.

It was almost three weeks before I listened to the CD. As expected, it left me in tears. I heard my Bert with my senses. I saw him, I felt him. In my mind I could see how patiently he worked with the therapist to put this all together. I heard the hesitant voice on the verses except for a few words here and there. The vocals are stronger and clearer as he sang the well known tune and words of the chorus. I heard him in my heart.

I miss the goodbye ritual we did as I left him with that amazing staff at the Adult Day Programme with his final words always being:” See you soon, my Paula. Drive carefully.”

He took care of me. He still takes care of me in the limited but so precious ways he can. Now he has given me the number one song of the century that for me will never go off the charts. I see myself playing this when I am lonely, when I miss my Bert, when I think of my loss and I will smile through the tears. My Bert is the one that can always make me happy.

How can I thank the staff for this gift? I cannot, but I will always be grateful for this most precious gift of my Bert’s voice singing his song for me and to me.

The Meander: I have learned throughout this journey that some of the best caregivers are the staff and workers who care for our loved ones. The staff of our Adult Day Programme is among the best caregivers I know. My Bert and I thank you for this tangible and most precious gift of your tender loving care.

Thank You, My Bert

I awake to the mumbling and an incomprehensible rant that is Bertish, the newly invented language of my Bert.

For a minute I lay still hoping that it will end soon. I am so tired I cannot see. One gesticulating hand hits me on the shoulder and coming out of the half sleep-half awake state, I realize that I cannot see because it is 2:15 a.m. therefore it is dark. Duh! Einstein.

A thought insinuates: If I could have known the future, if I could have seen this part of the journey would I still have married my Bert?

I was mortified that my immediate answer was not a resounding yes. Then being me I mentally started a pros and cons list and needless to say the pros far outweighed the cons.

I thought of our life together so far and marvelled at the adventure. I knew when tragedy struck I would not have wanted anyone else beside me. We weathered the storms together and climbed the highest peaks together. We laughed, we cried, always together.

My Bert knew before I did how to transform “I” and “Me” to “We” and “Us”. It is a transformation I cherish. We did not become one but as a team we were as one. That is the glory of love.

I realized that whatever is in our future my Bert was and will be always my Bert.

Yet thoughts do not come and go in an instant, they tend to linger with me and the question lingered. It bothered me that I actually let that thought in. I made a conscious effort to look dispassionately at my late night musing.

First I forgave myself. I am only human.

Secondly I realized that being tired and at the point of caregiver burnout such a lapse was inevitable. I am not Job. My patience is limited.

Thirdly I faced the futility of the thought. No-one knows the future so the question is moot.

Then the conclusion: How wonderful that the future is hidden. The worst thing about the future is that we do not know what it will bring. The best thing about the future is that we do not know what it will bring so we can look forward to it with hope. We can dream of a brighter day.

Then, as if the universe felt my troubled state and wanted to mitigate my self- flagellation it smiled on me.

In my mailbox there was a large envelope. It contained among congratulatory messages a notification of the Heroes in the Home Caregiver Recognition Award presented by the Local Health Integration Network.

It was the right time, coming at my hour of greatest need. What a lift and how serendipitous.

All caregivers deserve an award such as this because we are all heroes in the home. We give care fueled by love to those near and dear to us, sometimes at enormous cost to ourselves.

We never asked for this particular job. It is one challenge we would gladly forgo. We just do what we must do. We have no choice. It is part of the package. It is one leg of the journey. We accept it and hope the future will be less dramatic and traumatic.

The Meander: I have been honoured because my Bert first honoured me. My nominator Ana, and the people who surround us see beyond my Bert’s dependency. They see the love. Thank you, Ana. Thank you, HNHB-LHIN. Thank you, my Bert. “YES! I would do it all over again.”

Lifeliners Friendship Songs

Recently, it seems every Lifeliner was experiencing something a little beyond the ordinary. (See Post: My Lifeline) I opened my inbox and there it was in very large and bold print: LIFELINERS THEME SONG. Jay had sent it with a beginning note that just said: “Have to share”. The message contained the entire lyrics of “Thank you for being a friend.” Immediately The Golden Girls television show came to mind but what resonated was that as I read, the words took on a very special meaning. They seemed created for us, this little group of Lifeliners. It was the perfect theme song. Through the marvels of the internet we adopted it in minutes and were emailing each other saying we were singing as we wrote and signing off with thank you for being a (or my) friend.

In replying to Jay I wrote “…that’s what friends are for and, thank YOU for being a friend…” Seeing the juxtaposition of the two songs I smiled to myself. I could picture all of us holding hands and dancing as we sang our newly minted Theme Song. We do like to dance. Then I wrote suggesting that we should put together a list of songs of friendship that was illustrative of the special friendship we share. I am not sure my finger was off the ‘send’ button when Jay responded with a list she found at the following URL: https://www.thoughtco.com/top-friendship-songs-3248289

It was an interesting list as it did contain almost all of the suggestions made by us for our Lifeliners song of songs. Here is a NOT a playlist but a compilation of Lifeliners friendship songs. The collection ranges from a 1927 song to Bob Marley, Frank Sinatra, Rihanna, Bill Withers and more. Perhaps, if you are interested you can find out for yourself who sang what if it is not already included in the above URL. Here goes:

I am “Tongue tied” as my Lifeliners “Stand by Me” through thick and thin. We know “Everybody hurts.” I know that “Anytime you need a friend” a Lifeliner will say “You’ve got a friend in me”. I am never lonely as “I’ll be there for you” yes, “I’ll be there” is the assurance from each Lifeliner. “With a little help from my friends”, “I believe I can fly”. Sure, “The road is long” and hard but, “That’s life” though none of us have any intention to lie down and die. Rather, on dark days when it is raining tears we will gather together under the “Umbrella”. When we say: “You’re my best friend”, we say it to each one and also to the group who singly and together are the “Wind beneath my wings.”

We travel this road “Side by side”. We support each other, we share, we care because “That’s what friends are for.”

Lifeliners theme song is “Thank you for being a friend”. What a precious gift we give to one another. We are grateful that we can share this giant, amazing “One Love” that lightens the darkness of our unique night and makes us feel alright.

The Meander: In writing this I realized how closely aligned friendship and love are. I realized that friendship is the amalgamation of Agape, Filial and Eros those major columns of love. Friends have been very special all my life. The best friends just are, no subterfuge no wearing a face. That is the power of friendship. Friends choose to be friends. You love them, you like them; you are in communion with them. To all my wonderful friends: Thank you for being a friend.

Alzheimer’s World

The first time I heard the phrase Alzheimer’s World I was sitting around a large table at the Alzheimer’s Society office. It was a mixed group of persons with Alzheimer’s disease and other dementia and their caregivers. We were learning about the disease, its progression and available resources. What they could not teach us was how to live in that alternate world.

Caregivers have no choice. They do live in two worlds, the everyday one we know as the real world and the one that is Alzheimer’s world that our loved ones live in. If we are to be successful caregivers we must learn to also live in that other world.

It is difficult. Alzheimer’s world is a backwards world because your loved one is on a backwards journey. Right now my Bert is 85 going on four. A different puzzle is presented each and every day which only you, the care giver, can solve. Today he puts on his shoes one brown, one black. There is an easy solution to that. You make a joke, point it out and he changes them. He picks up a slice of bread and calls it cheese. No problem, you correct it or you say: “that is strange looking cheese.” That brings on a laugh and: “Did I call it cheese?”

Alzheimer’s world is one of anxiety. You can empathize. What if you wake up one morning look at your toothbrush and had no clue what it is, what it does but know you use this thing every morning? Today you look at a banana and call it steak, even though somehow you know that is the wrong word? How about getting up to go to the bathroom and being lost in a condo? Would you like to look at a washcloth, while sitting in the bathtub yet completely at a loss of what to do with it?

It gets a little more complicated, of course. These little slips are unimportant in themselves when they happen once but when they become habit it is a signal that the disease has gained a tiny bit more ground. Then the caregiver steps in. You take the washcloth and prepare it and explain or show by gestures how it is to be used. Every day I say to my Bert: “Here, start at your face and work your way down.” He gets to work. He now knows what to do and knows why he had that piece of cloth in his hands. More important he is doing it himself. Dignity is maintained.

Alzheimer’s world is suspicion, anger, feeling lost as well as a loss of control. It is confusion, dependency, a vast expanse of bewilderment. It is a loss of time, place, space, skills. It is disorienting as your entire world becomes narrower and your trust is placed in that one who is always there that you ‘shadow’, that you trust.

The caregiver cannot stand outside in the real world and look in awe or dismay at Alzheimer’s world. You must enter it, you must live in it. Empathy is your power, patience is your tool. The brain is still a mystery. We know in part only. As a caregiver no matter how bizarre that alternate world seems you must suspend your disbelief and go with your loved one into that world. You ask yourself: “What is it like to be so confused you have to give up your autonomy to someone else?” Then and only then can you serve with understanding and love.

I look at my Bert and when he cannot find the words or gets lost between the kitchen and the laundry I wonder what is happening in his brain. Does he feel as if he is trying to swim in tar? Does he feel he is in a vacuum? No wonder dementia patients get angry and lash out at the ones nearest and dearest, the ones they trust implicitly. We are there, easy targets and maybe this is the way they have a bit of control. They are engaged in a battle of heroic proportions to stay ahead of an incomprehensible disease. They wage a daily battle just to BE.

The Meander: No one can have a desire to live completely in Alzheimer’s world. It is too awful to contemplate. Yet, as bizarre as this sounds, there are times when you look at what is happening in the ‘real’ world and it is a relief to step into Alzheimer’s world and just focus on your loved one.

The Drop Sheet

Bert had me smiling at breakfast. He has kept his sense of humour and makes me laugh. That is a saving grace as we make our journey through Alzheimer’s World.

My Bert can be a messy eater. You can tell where he sits at the dining table because of the many crumbs around the chair. The usual napkins are not doing a good job, so I take out some extra large dinner napkins and tell him that from now on we would use those. I place one on his legs tucking the ends into his belt. It completely covered his lap. Bert, giggling, looked down and said: “ I have a drop sheet.” We just roared with laughter.

Was Bert remembering the painting business he owned long before I met him? That reference, plucked from the recesses of his mind was so apt, we laughed together and started the day and the week off on a happy note.

At lunch Bert seemed to be waiting for something although everything was on the table. I said: “Is everything alright?” He answered: “Where is my drop sheet?” Another big laugh. I guess from now on a napkin will be a drop sheet.

In Alzheimer’s World the past is more real than the present. I know by dinnertime he may just spread the napkin on his lap and remember nothing about his paint business, drop sheets or our conversation. For now, I savour the moment.

…

There is a knock and I answer the door. The delivery I expected has arrived. I take the package and sign for it.

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

“You have to get the ticket. I have to bill the customer.” The penny drops. He is back to being CEO of his courier service.

“No, love, the man delivered to us. He takes the ticket back to his company.”

“Why did another company do the delivery?”

“Because that company does deliveries for the one sending me the package.” There is still a puzzled look but no more questions.

Two days later. “It is forty-five dollars.”

“ Um, forty-five dollars.”

“Yes, that is the charge for the delivery. You have to collect it”

“Oh, alright, I will collect it tomorrow. No problem. Would you like a cup of tea?”

“Oh, Yes. That would be good.”

“I want one too. Put on the kettle please.” He goes to the kitchen and I say: “You can deliver it to me too.”

“Ok, but you will have to pay me.” He glances back with a look that says clearly: “Gotcha.”

Bert sold his company in 1995.

….

Dinner is finished, dishes done and Bert is doing his last chore of the day – closing the shutters. The guest room is last as usual and he spends more time there than it takes to close those shutters. I know what he is doing. Soon, I hear a chuckle and out he comes.

“I just finished talking with Moeder (Mother). I told her I did the dishes and put them away. She said she hoped I washed them better than the mussels.” We laugh.

Bert ‘talks’ to his mother’s photograph every night. The mussels is a reference to the war years. He has told me he and his mother would wait two or three hours at dawn to get a pail of mussels.

Sometimes she tells him not to ‘fall off the sacks’ which is another war memory. He and his mother would go to farmers and ask to pick up any stalks of grain left on the field. After receiving permission it might take them the entire day to pick up a full sack of grain. On one particularly good day of garnering, Moeder tied two full sacks to the back of her bicycle and told Bert he would have to walk beside her as she could not take him as well. According to Bert, as she started to pedal slowly so he could keep up he took one flying leap and was atop the sacks of grain. Moeder was amazed, terrified and worried about him falling off all the way home. He would end with: “It was hot, I was tired. I was not going to walk home.”

The Meander: Bert demonstrates his love for me each morning he sits across from me and watches me eat my oatmeal. Bert does not eat anything that resembles ‘pap’ (porridge) or even cereal. Ask why and he will tell you: “That’s all I had during the war.” Not quite true but it is mussels, yes, porridge no.

There is a poignant exigency to hold on to Bert’s memories. How long will he remember? I have heard them hundreds of times. When he forgets, I will remember for him.

Something Worse 05/22/2017

The T.V. is on

An intrusive susurration

Barely audible

I hear, I do not listen

My thoughts are inward, personal,

Dark

Created from fear

Not knowing what lies ahead

Afraid to speculate

So tired, breathing is onerous

Brain at rest is wishful thinking

Sleep deprived too often a descriptive companion

Sleep is a roiling, swirling maelstrom,

Too vigilant to be peaceful

Thinking, doing, planning remembering for two

Forgetting self

Learning new unwanted skills

A logistical nightmare

Endless.

Tears make tracks down my face.

This disease that robs our humanity, our dignity is the worst.

“…Breaking news…22 persons, including children were killed by a suicide bomber at Arianna Grande concert in Manchester City, England… Hundreds are injured…”

Breath caught…Breathe, just breathe.

No, dementia is not the worst.

This is.

The Meander: May 22, 2017 was one day that the burden of being a caregiver was heavy. The senseless bombing and loss of innocent lives at what should have been a happy occasion gave me a new, if somber, perspective. I had to record it somehow.

WWWW means Wonderful, Wild and Wacky Wednesdays

Wednesday mornings are wonderful. We laugh. It is one big inside joke for ten people.

In 2014 my husband was diagnosed with Dementia. I was given a host of print resources, contact information for various support agencies and groups. I contacted the local chapter of the Alzheimer’s Society. I got more information and schedules for upcoming seminars that could prove useful. It all seemed overwhelming but I knew this disease was not to be taken lightly, so I just decided to take things slowly as I learned and raged against the unfairness of it all.

We were told of a new programme called Minds in Motion. Funding had been secured for an eight week session every Wednesday morning from 10 a.m. to 12 noon. The first hour would consist of gentle exercise, mostly while seated and the second hour was for socializing. There would be games, puzzles, talking, telling our own stories. Minds in Motion is a direct response to the proven scientific fact that social interaction and exercise is vital for dementia patients to help them to keep their brains and bodies functioning for as long as possible. In fact that is a requirement for everyone. Minds in Motion is a programme for both caregivers and patients. Perfect.

I signed on, and so did 12 other couples. Minds in Motion was such a success, the only negative feedback was that we needed more sessions.

Minds in Motion created a community. As another series drew to a close we wanted some continuity. We had found a common ground and wanted to stay in touch. One suggested we all go to lunch after the last session. We did and at lunch we spoke about how valuable the sessions were and hoped they would continue. Another wondered if we could meet for coffee on Wednesday mornings since we already had that time reserved for Alzheimer’s activities. There was general agreement. It would be purely voluntary. Anyone who wanted to would meet at a nearby coffee shop on Wednesday mornings.

Five couples showed up. Thus was born WWWW Wonderful, Wild and Wacky Wednesdays. This day is sacrosanct. Wednesday is reserved for our couples activity, either Minds in Motion or coffee time and only missed for priorities such as illness, medical appointments and laboratory tests. It is a lifeline in a world turned upside down, a bridge between our two worlds, the real and the one known as Alzheimer’s world. It is my lifeline. Wednesday mornings make the insane, sane.

The Meander: Five couples showed up. Five couples, nearly strangers now best friends. Five couples connected by a dread disease. Five couples who together try to outwrestle dementia. Five couples who support each other and have magically found solace and laughter. Every caregiver needs a lifeline like this.