Alzheimers - Meanderings

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.

The Word of the Day is NO!

“Hi love, how are you?” I entered into the home with my happy face on.

“Good.”

My Bert looked up at me but he was not smiling, he was not giving me a salute, his new greeting. He seemed a bit morose.

“Is everything okay? Are you feeling well?”

“I am fine.” Hmm, he is not his usual cheerful self. Maybe he is hungry. It is soon lunchtime. I wheel him into his room and set up the cart ready to be shown the choices for the day. In the meantime I put on his music, but he did not sing along as he usually does..

Soon our cheerful dancing PSW comes in to display the choices for lunch. First displayed was the tuna fish sandwich with garden salad. My Bert looked at it and said: “No.”

She moved in time with the music as usual then showed him the hot lunch. It was hamburger with macaroni somewhat akin to hamburger helper, mixed cooked vegetables, mashed potatoes with gravy. The dessert was not displayed but he loves sweets and I know he would get two desserts. He looked at the plate and said “No.”

“Sweetheart, you will have to choose something to eat. Look again.”

My Bert looks at the plates and with a shrug chooses the hot lunch.

The tray is brought in with his chosen lunch, milk, cranberry juice, water, fruit salad and a piece of pie and the soup of the day which today is vegetable. My Bert loves soup so all should be well.

“No.” That came as I offered the soup. No problem I will start with the entrée. “No.” That’s okay I think as I select the mashed potatoes. “No.”

“What do you want to eat first?” My Bert points to the fruit salad. Eating dessert first is no sweat at all. My Bert eats it all up then points to the entrée. He eats a half and says, “No.” I offer the mashed potatoes, and he eats most of it.

My Bert now points at each item in turn and eats until there is not much left of anything. He eats all the vegetables. It is smooth sailing or rather, eating. I think the soup will be a breeze.

He looks at the soup as I raise a spoon to his lips and he says “No.” I begin to cajole, entice, and stir it to show him how much vegetables are in it. I talk about how he makes very good soup and how we both love soup. At each juncture he says “No.”

“Hey, I bet if you taste it you will like it. Have some soup and then you will have some pie.”

“N… O… NO!” He shouted. I was speechless. The force with which my Bert said this as he looked at me, the resolute, unyielding, indomitable will evident in every fibre of his body made it impossible to misconstrue the fact that he was not going to eat his soup. Not today and perhaps not ever!

I slowly put the spoon on the tray. I covered the soup. I knew without a shadow of a doubt that soup was not going to go anywhere near my Bert today. While I did this my mind was a turbulence of thoughts.

What depth did my Bert have to plumb to retrieve that sequence? It was appropriate, to the point, communicated exactly what he wanted to say in a concise and forceful manner. But not something I thought he was capable of doing.

From where did that so logical utterance come? Was he recalling the old memory of us together telling our sons: “Capital N, capital O means capital NO.?” This was usually the response when they ganged up one or the other or both together asking for something trivial. When this answer came they knew that was the final answer.

Did My Bert have a sudden but compelling need to exhibit some control over his circumstances? There is so little over which he has any control now. Was my Bert who was decisive; who was in control of his own business; who had strong opinions and made choices unafraid; was that man now reduced to refusing a meal just to prove he was still a man? The thought saddened me.

Was I being fanciful and reading too much into the incident? Maybe he just did not want soup today. I smiled inside. This was the take charge brook no nonsense Bert I knew.

I cut into the blueberry pie. He accepted it, chewed and said: “Good.”

The Meander: I believe we underestimate the abilities of our loved ones. We are so caught up in the caring we sometimes forget the characteristics and those inherent elements of their nature that makes them the persons we know and love.

Alzheimer disease may take away their faculties but it cannot take away their character, their essence, their personhood.

Recap to Forward

How were the holidays for you? I was going to ask how 2020 was but I know the answer to that. Unless you were under a rock in some undiscovered region of our planet you will have definite opinions on the pandemic year and I would guess the recap is not ecstatic.

Yet, it was not all despair. There is no need to itemize neither the many disasters nor the outpouring of kindnesses. The yearend pundits have done that ad nauseum.

Let’s leap forward into 2021. It’s January 1, 2021 and leap is the wrong word. The transition from one year to the next was so uneventful. I made a tour of New Year’s Eve celebrations on television that were not. The hosts of the non events tried valiantly but New Year’s Eve celebrations need people, music, parties, gatherings, community, and friends.

If it were not for the various fireworks displays streamed every now and then as we followed the dawning of the day around our world this passing of 2020 into 2021 would be just another night into day.

Yet this is a special passing from darkness into light, and although we are stumbling around in the dark there is some light. There are signs that a new day dawns.

Who would imagine that a vaccine would be the most positive highlight of a year or that so many would be anxious to roll up a sleeve to get a jab from a needle?

2020 was such a disaster positive spins came out negatively. Comments ranged from: “Well, I am still on top of the grass.” To “It could have been worse, I suppose.” The latter said with such dubiousness that you heard the unspoken: “but I don’t know how it could have been”.

Christmas 2019 I was so stressed going all out on the celebrations, fearing that it would be the last Christmas we would be together as a family in our home. We knew that a person with Alzheimer disease went one way only. Every recurring occasion, event or celebration could be the last.

Though 2020 made the fear a reality it could have been worse. We were all well, on top of the grass and Christmas was not cancelled. We did have lunch together with Zoom as the connector, and a new tradition was born.

I am not sure Corbert and Amy are aware of this new tradition as yet but I have already embraced it wholeheartedly. Until this pandemic year the family came to us. We had a great time but lord, was I tired afterwards. This year I went to them.

What a difference. I was pampered, well fed by the wonderful Amy, while Corbert got me whatever I cared for, set me up with a movie we could all enjoy, and I was able to watch the minuet as they both worked at the various tasks that resulted in a delicious meal. It was a special time of togetherness, family, love, sharing and caring.

That is my new tradition. I better tell them about it.

As for being together, that had special meaning because at 12:01 a.m. December 26^th we would be in lockdown. That meant being confined to our homes, only leaving for essential services like going to the pharmacy, grocery store or to medical appointments. Since I was sleeping over I decided going home qualified as essential especially as it included a stop with my Bert for lunch.

So now 2021 is here. How will it unfold? Who knows? I think it is good we cannot see the future. We can look forward with anticipation and hope. Hope is positive but there is a tad of negativity in the oft repeated phrase: “Well, it can’t get worse can it?”

When you are a caregiver to a loved with Alzheimer’s disease it can get worse. There is no denying that, yet my Bert is able to bring joy. He has two fixations these days. He looks at me and calls me his wife but is unsure that I am Paula. It seems there are two Paulas. One he met years ago and remembers and this old, masked, face shielded and sometimes gowned apparition who is somewhat familiar but is another Paula.

The next fixation is that he is often at sea when he is hallucinating. Most times he is on a cruise but at other times he is sailing with the Swedish Merchant Marines. He cruises a lot and usually tells me to show other guests (he sees them) to the dining room. There is logic to that as I always visit him to help out at mealtimes.

I want to be in his brain. First the Paula he is seeing is one I would like to see when I look in the mirror each morning. She was hot!

Oh, to be on a favourite cruise line, enjoying the sea, the people, the ports, the tours, the food.

My Bert and I are still living in true partnership. He is living in recap mode and I must look forward to meet what’s next. That is perfect symmetry.

The Meander: May we more than endure in 2021. May the new normal be an improved normal in a healthy world.

Happy New Year!

Covid Busyness

It is hard to live in two worlds. Yet that is what you do when you are a caregiver to a loved one with dementia. Your two worlds are the real one and Alzheimer’s world. Add in a third which is the Covid 19 virus world pandemic and that existence becomes even harder.

I believe that the next world pandemic will be a mental health crisis that will be a marker of the new normal, whatever that is.

Now that I am about to get my 17^th Covid test I am convinced that my mental stress will come from having that elongated Q-Tip being swirled around somewhere north of my eye socket and approaching my brain via a nostril. I mean, really! Yet I go trotting off again because I need to have that negative test result to be able to visit my Bert.

To add insult to injury, another edict has come down from the Ministry of Long Term Care (LTC) that the tests are now required to be done every seven not 14 days. This might mean a test every four days as there is no guarantee that results will be available in the touted 24 hour turnaround window.

I call this Covid busyness of an insane Government. The LTC Covid-19 Commission released an interim report recommending that hours spent by staff on personal human contact in direct care be increased. The Ministry’s response was that it would aim to achieve this in FIVE YEARS and then it announced that testing for all staff, essential and designated caregivers would be required every seven days. Essential caregivers would have to show the negative test result to be able to visit their loved ones. No negative test result, no positive visit.

In one devastating swoop incompetence met up with insanity; privacy issues went out the window as you must show your medical record which will be kept on file; already stressed staff will be going for testing instead of caring for residents; the amount of time now spent on care will be reduced going counter to the recommendation of the need for more time for residents; critical social contact necessary for resident’s well being may be curtailed if test results are not timely; any help given by family essential caregivers will most likely decrease if test results are late, lost or testing appointments missed for any reason.

I surmise that if your loved one is in a large or medium sized home, testing every seven days of every staff member and others would take away a good percentage of the little time already being spent with residents. After all, the everyday workload would not be reduced but nowhere did I read that staff would be increased to allow for this weekly testing..

There is talk of a new fast test protocol where results would be available in twenty minutes but until that happens, it is just palaver. There is always talk and more talk but no action. If this is action then five years could become ten or perhaps never.

Am I opposed to testing? Certainly not, hence 17 and counting. However, it seems this is just another patchwork idea to say: “We are doing something.” without looking at the efficacy of the ‘something.’

My Bert too has some Covid busyness going on. He is so chatty my head spins trying to keep up with his forays into all subjects within one sentence stream. This is good, but it is as if he was so devoid of conversation that now I am available he has an audience of one to verbalize all the pent up thoughts in his head. Like the politicians he is suffering from verbal diarrhea of a different ilk.

Most of my Bert’s conversations are born in hallucinations veering into delusions and confabulation. Interestingly enough I can follow these strains of errant thoughts as in the telling there is usually some hint of reality of past shared experiences. If there isn’t I just agree. I mentioned this to a friend, a professor of Ophthalmology, who suggested they may also be complicated by his having advanced macular degeneration and thus experiencing Charles Bonnet syndrome.

Being aware of my penchant to hear disjointed streams of words, as example, hearing Baker’s yeast instead of Baker’s cyst and emotional liability instead of emotional lability, I asked her to spell it. Good thing she did as the Bonnet is pronounced Bonay. I might have still been looking for Charles Bunny. Briefly:

“Charles Bonnet syndrome refers to the visual hallucinations caused by the brain’s adjustment to significant vision loss. It occurs most often among the elderly who are more likely than any other age group to have eye conditions that affect sight, such as age-related macular degeneration.”

No wonder my Bert is busy. Not only does his brain have to deal with Alzheimer disease hallucinations he also has hallucinations caused by macular degeneration and living in Covid-19 world too. Crazy world and crazy life.

I too have Covid busyness. Besides trying to figure out the intricate permutations of my Bert’s brain, I find that I am becoming more of an advocate for those living and working in LTC hence this somewhat political slant in my thinking. If only politicians would recognize that their role is to advocate on behalf of their constituents and enact legislation that benefits them.

My friends are also Covid 19 busy. Ask what keeps us all so busy and we are stumped to come up with a definitive answer. My answer is I have found an infinite capacity to be busy doing nothing. That is not all true. I believe that Covid 19 has shown us a different kind of busy where the simplest task stretches out to fill an inordinate amount of time disproportionate to its difficulty. This is also coupled with an inertia that goes right down to the bone. Everything is slowed, takes more effort than it should, more thought, and care.

We seem to have our fingers hovering over the pause button. It is a long frustrating pause but it is also a time to dream and breathe and wonder. It is a pause to create, to be creative, to care and to act.

The Meander: If we care enough perhaps our tomorrows will be brighter than our todays and we may just be able to avoid the next pandemic.

New Decade, New Hope

Another year has come and now gone..

The Christmas experiment of taking my Bert to our home for Christmas with the family turned out very well. It was a wonderful day for all of us. All the angst and what ifs and worry about a failed dinner, confusion, anxiety and the many issues that could occur when caring for a beloved husband and father in the grips of Alzheimer disease fizzled into nothingness.

We tend to worry too much.

Now 2020 is here. Again the hullabaloo of making resolutions assaults the airwaves. I pay no attention. At the dawn of 2019 I chose the word ‘light’ to be my guiding star. I will keep it going. Heck, I may never change it!

I do believe in the yin and yang of existence. I believe we need both to keep balance. I know that without darkness, without evil we would not know light or goodness.

Of course, 2019 brought its darkness. There were many ‘firsts’ in my life that came unwanted, unbidden. There were some I eagerly embraced. Through it all the light kept on shining.

This momentous dawning of not only a new year but a new decade gives me pause as, with the help of every news medium, I am bombarded with reminders of the momentous events that happened in the last decade. There were some amazing stories both good and bad. Surely this coming decade will be an entangling of the same. After all, we know the only constant in life is change.

So here we are entering the third decade of the twenty-first century. I look back at my own third decade and realize it was a momentous one in my life. However, I have no desire to return to it. In this new decade I am looking forward, still blinded, unknowing, but hoping for the best. The future is clothed in mystery and that is how it should be.

During 2019, I learnt to not dwell too much on the ifs and what ifs. I know that life will go on as it usually does. Much will happen as the world inexorably unfolds and the history of this time is recorded. Some events will affect me personally as my own history continues. Some will affect all of us and be worthy of note because we are part of this world and part of the universe. We will laugh. We will cry. I hope the laughter is more abundant than the tears.

As Doris Day sang: “Que sera, sera, whatever will be, will be.”

I am also aware that each of us has the power to make a difference to many. What we do and how we do it will attest to our strength and belief in ourselves to do good or evil or do nothing at all. We just have to choose and choice is what makes us human.

My choice for the new year and the new decade is to savour the many moments of joy, no matter how small, to treat others as I would like to be treated, that all I do will be fuelled by love, to keep on learning, to live in hope and yes, to continue to seek the light knowing that the stars are brightest in the darkest night.

The Meander: I wish good Health, Joy and Peace to all. Happy New Year! Happy New Decade!

Season’s Greetings

As in former years I am left wondering where the year went. It seems as if I was just writing my Christmas letter of 2018 and looking forward to a bright 2019.

And as in former years this 2019 has seen its highs and lows.

Throughout the year my belief that there is always a silver lining remained. Even the fact of my Bert being away from me had its silver linings. He went into a home I had chosen. A good choice still and one reason I have been able to concentrate on loving while a team of professionals help with the caregiving. The staff is awesome!

Also, if my Bert was still living at home I would not have been able to attend the funeral of my dear childhood friend in Atlanta. That was a perfect storm of highs and lows.

My gratitude gene got a good workout throughout this year. I am so grateful to our son and daughter-in-law who even with busy lives help to fill in the gaps, the Lifeliners and their invaluable support, and to the friends and neighbours who surround us with little acts of kindness every day. How could I not be grateful.

2019 was a packed year and yet I still wonder where it went. There is an experiment in the offing. My Bert is coming home for Christmas. How will that go? No one knows. Unlike the waffling about the anniversary celebration, there is no hesitation here. My Bert loves to go out and has regular outings with visiting friends and bi-monthly restaurant lunches with the family. Spending Christmas in our own home is a no brainer. We are planning a Bert’s Christmas. We hope it will be smooth sailing but are prepared to roll with the punches whatever happens.

All in all 2019 was filled with more highs than lows. Between those two extremes life went on as usual. There were funerals to attend, love and marriages and new babies to celebrate. We dealt with the ordinary tasks of daily living and revelled in the many moments of joy.

It is Christmas time, the holiday season of hope. It is an awesome time!

May you have the Spirit of Christmas which is Peace

The Gladness of Christmas which is Hope

The Heart of Christmas which is Love.

Wishing you health and happiness and happy meanderings in 2020 !

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.

It’s Little things

I still put too much water in the kettle for just one cup of tea.

Yikes! The 403 highway is heavy for this time of day. I better go over into the High Occupancy Vehicle (HOV) lane. That one is really moving. Stop! You need two people in the car to do that.

I am setting two places at the table, but there is only one eating.

I wake up between 1:30 a.m. and 2 a.m. every night expecting to hear the new language I call Bertish. But I am met with silence. I turn around and I fall asleep again. Ah! That’s a difference and that is good. I need to sleep.

The book is engrossing but a glance at the clock tells me it is 7:10 a.m. I better put it down and get cracking as the personal support worker (PSW) is coming at 8 and it takes a while to get myself prepared for the day and my Bert ready for his daily routine. No, no, my Bert is not with me. There is no PSW on the way. You can read another chapter I tell myself but I don’t. Instead I get out of bed. I have not gotten used to indulging myself as yet.

I go into the laundry room. I want to separate the wash. I don’t have to as there is so little there in the hamper. They are all mine. I can wait another day or three before I have a full load.

One whole hour has passed and I have not heard: “I love you. You don’t know how much I love you. I love you from here and around the world 15 million times.” I do not utter a sigh nor think here we go again. I miss it now. Oh, how I miss that now.

The waitress brings the bill. I look at it and I wonder if she brought me the wrong one. I pause too long and she says: “Is something wrong?” I shake my head. “No, it is fine,” I answer. How do I explain that I am eating alone in a restaurant for the first time in a very long time? A bill for one seems so small. I want to see an amount for two. I give her a large tip. She smiles as she says thank you.

The yogurt my Bert loves is on special at our local grocery store. I begin to pick up a package of 12 small cartons. That is the size he has every morning at breakfast. I stop. I move along and pick up the one I like. I hurry from the store. My list is not complete. I have to sit in the car a while. I breathe. I drive the short distance home. Tomorrow I will finish the shopping.

I wonder when it will stop becoming ‘his side of the bed and his place at the table.’

I open the hall closet and his long metal shoehorn hangs there. There is a hitch in my breathing but I will not move it. I will not put it away. I cannot put anything else away. I have already put my heart away.

I need to get something from an accessibility outlet that will pull up the long zipper at the back of my favourite dress. My Bert took such pleasure in doing that simple task for me. He was my helper.

I wash one dinner plate, one fork, one spoon, one knife, one cup, one saucer, one glass, one bowl – one is such a lonely number.

The sunset is magnificent this evening. This was a ‘together thing’. Today I drew in the light and colours of the sunset, alone.

The Meander: Yes, I now recognize the sound, the many sounds of silence. Silence is loudest in lonesomeness. It is eloquent in emptiness.

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.”

Kaleidoscopes

It was my birthday. There was a party. I got presents. The best and the most wonderful present was a kaleidoscope.

How magical. Every colour of the rainbow and every hue imaginable, jumbled, tumbled, scattered, reformed then rearranging themselves into fantastical patterns, symmetrical, ordered, pleasing. Awesome!

Disorder tamed and changed into order. A chaotic profusion of wild, disparate colours gathered and sequenced into beauty, a moving spectacle that you controlled simple by a turn, a little shake, the merest tremor and new patterns emerged.

Every different settling was new, surprising, and magical. There were enumerable moments of discovery filled with joy.

I have a new kaleidoscope. I am desperately twisting, turning, and shaking seeking its order. I want the chaos of my life in this kaleidoscope to fall seamlessly into place, into an order I can understand. My new kaleidoscope is faulty. No matter how I turn and shake and try to encourage it to form Tiffany glass creations of beauty and unity, I fail.

I can see bits and pieces scattering as they fall but they refuse to coalesce and, if a few do by chance, the result is disordered. It is a fusion of confusion. A hodgepodge of the past familiar intermingled with hiccups and blanks of the present. What is created is strange to me though the pieces are familiar. I have failed the course of making sense out of nonsense.

My Bert is my new kaleidoscope. The beautiful patterns we used to make together are now no more. He is a mirror that has lost its ability to reflect; a dancer without coordination.

As a child I wanted to go into the kaleidoscope to see how it worked. I wish I could go into my Bert’s brain to see how it is, see how it works and to see if there is anything I can do to fix it. Then again: “If wishes were horses, beggars would ride.”

The Meander: I kept my childhood kaleidoscope for a long time. It delighted and entertained. Then I lost it. My Bert and I have known each other for 52 years and have been married for 50 years and counting. I suppose that is a long time. He still tries to delight and entertain. It is an effort. I have not lost him. Not yet.