Tag: #caregiver life

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.

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 17th 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.

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.”

Chatterbox

I have been called many things over my lifetime but chatterbox is not one of them.  Yet lately that is what I call myself, to myself.  Why would I do that?

I am Canadian so I will blame the weather.  This has been a particularly harsh winter.   There has been much wailing and gnashing of teeth (mine) as my Bert, whose only contribution to our travel adventures was: “Where are we going next?”  uttered before we had unpacked the bags from our last trip, is no longer allowed to travel. I had no idea that I would miss our travels, our winters away in some warm place or on a ship so very much. So here we were stuck in winter in our wonderful but COLD country.

My Bert would often say that Canada is the best country in the world except for the weather. I agreed, but would temper my enthusiasm with the thought that if Canada had  perfect weather it would be perfect and there is no such thing.

Here is another observation that my Bert would voice often: “Paula is always telling me that I talk too much but she talks too.”  “Yes, I talk but not anywhere as much as you and in any case you are such a talker, someone has to be the listener” I would answer. Then with a laugh he would say: ‘That is why we have the best marriage. I talk and you listen.”  That was said with a tone to make it unbelievable.  Yet, all that was true.

My Bert is really an open book and loves to talk.   Many a time we have been to a restaurant and before dinner is completed the entire wait staff knew more than they should about us, from how we met right up to our present situation. I would be kicking him under the table to tell him to be quiet to no avail.  I would be ignored.  I would then have to become the interpreter, rephrasing or correcting or echoing my Bert’s pronouncements and also becoming a listener.

Oh, how we talked together.   My Bert had such stories to tell!  We are both curious about our world, our country, people, places and things.   My Bert devoured news and current affairs.  I read and we talked about everything.   Our conversations encompassed silly things, weighty things, family things and couple things.  We agreed, we disagreed and agreed to disagree and we laughed.

Oh, how I miss that talking together.  Now, trying to have a conversation is a Herculean task.  I give up any thought of having a sustained conversation.   In the absence of that verbal communion I have become the chatterbox.  The sentences are made up of the basic noun and verb.  Heck, it could be just one word.  I get back one word in return and sometimes the word returned is completely out of context.  When my Bert attempts to express a thought it ends abruptly halfway and I try to finish it.   Sometimes I succeed but that is becoming more difficult as time passes. It is difficult to enter Alzheimer world when a thought is unfinished.

The inanity is mind numbing.   When does speaking become just noise?  When does it lose its main function of communicating? It tests my patience and it saddens me to see him struggle to find the words.  I think he knows what he would like to say but it takes a valiant effort to get it out.  Sometimes he just gives up.  The frustration is apparent.   He begins to pick at his fingernails and mumbles.

How can I relieve the anxiety?  I say: “Don’t worry.  Tell me tomorrow.”   Then I will rub noses or give a hug.   These now are the best communication tools.  There is no need for words then.

The Meander:    Should anyone be looking for ‘tomorrow’, ‘soon’, ‘later’ please check with a caregiver for a loved one with dementia.  We have usurped them.  We are wearing them out completely.  “When do we go to Breda?”   That is Bert’s birth city in The Netherlands.  “Tomorrow.”    “When are the kids coming?”  They left maybe ten minutes prior.  “Soon.”  “Are we going to bed now?”  We have just finished lunch.  “Later.”   A loving touch, a smile, a hug and holding hands are enough to relieve his anxiety.   We still ‘talk’.

Birthday Appraisal

I have just celebrated a birthday.    On the morning itself I turned to my Bert and said:”You can wish me Happy Birthday”.  “Oh, is it your birthday? “Yes”.  “Happy Birthday, Sweet Pea.”

The telephone rings and it is the first greeting of the day. “Who was that?”   “That was our son and daughter-in-law.  They were singing the birthday song to me.”   I begin to sing and he joins in.  “ Are they coming today?”  “No.  The family celebration was on Monday.  We had a lovely meal and you really enjoyed your shoe-string French fries.”  “Oh”.

My birthday was wonderful and different. It began with a Caregiver Wellness programme which included Dancercise, Music Therapy and Meditation. There was a fabulous lunch, then dinner with friends at a Japanese restaurant.  We sat at the Teppanyaki Bar.  My Bert exclaimed as the flames shot up towards the ceiling: “Gosh, I am HOT!”  Naturally everyone seated at our station laughed.  The evening was filled with laughter.

My birthday is a time of introspection; of reviewing the past year and looking with hope towards a brighter year.  That has not changed.

However, this year my astrologist friend told me that this was a special year for all who are born on March 21st.  She referred me to an entry in Google quoted here:

“Your horoscope for March 21 to 27, 2019. This is no ordinary change of season. Spring has sprung on a super full moon in Libra and with the sun in Aries supplying added life force to Chiron in Aries, a transit that happens once every 50 years. … Aries is the sign of new beginnings, fresh starts, and action.”

I kept on reading the lengthy article as I was curious.  It proved interesting until I got to such deep astrological pontification on ‘Solar Return’, ‘square aspect’ and ‘Mars-North Node aspect’ the latter supposedly having great impact on my relationships and love life.  I am a caregiver for my Bert.   I can teach all aspects, astrological or not about love.  I gave up on the long form and with tongue firmly in cheek parsed the above short version specifically for ME, the birthday girl.  Here goes:

“This is no ordinary change of season” – It never is in Canada.  Snow in May and golfers teeing up in December are par for the course. Groan.  For me the seasons change on a daily basis and they are: a good day, a bad day, a day when brain cells die, a miracle day of almost normal.

“Spring has sprung” – Hey, hold your horses.  It is still only March!   Meteorologists will tell you that spring arrives on March 1st.. Huh?  Yet March does bring hope for warmer days.  I can feel that spring is in the air and I celebrate the fact of life, new life, my life, my day.

“A super full moon in Libra”- I did see the super full moon.  It was heavenly! (Geez!).  I did not care that it was in Libra or Libya or wherever.  It was full.  It was bright.   I was happy to see it.

“The sun in Aries”- If I had the power the sun would always be in Aries and every other Zodiac sign.  I am a child of Light.

“… supplying added life force to Chiron in Aries…every 50 years”:  Yes, the sun is a life force.  The rest being Greek to me I went to Google.    I found this among other soon to be forgotten tidbits:

“In astrology, Chiron is referred to as the “wounded healer,” and on Feb. 18, this strange, and oh-so-unique, comet will conclude an eight-year-long transit through the dreamy sign of Pisces, and slide into fiery Aries until the year 2027. Naturally, this asteroid’s energetic influence will play a role in both our lives, and in the collective overall. So, yeah, this is definitely a big deal.”

No big deal to me as I will be long dead before this fascinating phenomenon comes around in 50 years.  Neither does being on fire for the next eight years inspire jubilation.  Also, since being sidetracked is an ever present danger when on the internet I also found out that Chiron is a comet, a key, the biggest superpower we have which helps us unlock our greatest gift from the heavens.    Somewhat oxymoronic for a “wounded healer” I thought.

The best was last.

“Aries is the sign of new beginnings, fresh starts and action.”  Every day is a new beginning.  For my Bert I could say every minute is a fresh start.  As a caregiver I am always doing.   I saw this as being given permission to be positive, to never give up.

The Meander:   Astrological prognostication or not, life is not dictated by our stars but by ourselves.   We can choose how we will overcome the vicissitudes thrown in our path.  I choose that no matter how dark the day I will try to face the challenges with a positive attitude for the rest of the journey.  We will make it with a little help from our friends… and astrology.

It’s a Journey

Life is a journey is an oft repeated cliché.  There is truth in it.  What better way to describe the path we each travel from birth to death.

My Bert and I recently celebrated our 50th wedding anniversary.  I have been pondering our journey together.  There have been many journeys within the journey.  All began as unknown territory.

Journeys begin with hello.  They end with goodbye.  Some flash by like comets others are slow perambulations.   Some are sunlight, some are dark night; some give you strength, some make you weak.

Some you want to hold forever; some you can’t wait to let go.  Some make you laugh until you cry some only make you cry. 

There are journeys that you seek and journeys that are thrust upon you.

Some journeys lead you to people who become Lifeliners, friends forever.  Some lead to people who are fleetingly important for just a moment in time.

Journeys are moments, no matter the duration.   Some are landmarks of your life that help you find your soul, your strength, your spirit.   Journeys are multifaceted.  You juggle the segments, living them concurrently.   Journeys teach you to multitask.

Journeys are never straight, direct or easy.  Yet once you begin you must continue.

Some journeys seem never ending.  You stumble, ineffectual, distraught, full of fear, numb with disappointment.   You see chasms and dangerous cliffs, mountains that seem too high to scale.  There are twists and turns and unexpected obstacles.  These are the fragments that seem to be put in your path to frustrate you, only you.  Now comes the realization that this is really your journey, only you can walk this particular road, only you can make the decision which path to take.

 It is wonderful when you can take control of the journey.  You have solutions to problems, answers to questions; you dream the impossible and see it become possible.   You start out in uncharted waters diving into unknown territory and surprisingly make a safe, happy landing.   Yes, some journeys are wonderful, delightful and satisfying.

Each one has a life journey.  How you travel it is up to you.   You can accept the help of friends and family with grace.  You may show gratitude for the kindness of strangers.  You may be lucky to give love and have it returned twofold.  In the end your journey will be a reflection of your truth, of you.

More than 50 years ago My Bert and I like so many others have over the years, made a decision to walk our journeys together.    What a journey it has been and continues to be.  On this challenging leg the decision on how the journey unfolds is mine to make for both of us. I can make us both miserable; bemoan the unfairness of it all or I can embrace the privilege that it is to be a caregiver to the one you love and to whom you are the world.

My Bert and I are still saying hello to love, to life, to joy.  We embrace the moments and while they are fleeting for him and lasting for me they are our moments.  His journey and mine will commingle as they have for more than 50 years.    We will continue to walk in tandem and greet each day with hope that it will be a good day.

The Meander:   The day you are born is the day you begin to die.  That is inevitable, inescapable and undeniable.    As my Bert and I continue to say hello at the dawn of each new day I hope we will both be able to rise to the occasion and be ready to say goodbye at journey’s end.  In the meantime we will keep on with the journey.  We will live the moments and not look around the bend.    Why bother? What is there will come without fail.

Resolutions

No doubt resolutions are being made left right and centre.  Resolutions are being broken even as I write.  Resolutions made at the stroke of midnight as 2019 dawned are already in the trashcan of what might have been.  I rarely make resolutions even though I see the New Year as an opportunity to begin anew, to look forward, even to dream and to plan.  However, to continue my ruminations on 2018 I have decided to take a leaf from Melinda Gates’ book and choose one word to guide me throughout this year.  It has been reported she does that and since I am not that enamoured by resolutions this seems a good alternative.  I have chosen ‘Light’ to be the word that will guide me throughout 2019. I have decided to walk in the light to see the light and whenever possible to be the light.  It sounds laudable but  I have to acknowledge that this may be the hardest objective I have ever set.  Yet at the same time I have some confidence that it is the one I may be able to attain.

So far keeping resolutions has not been my forte.  I am going to lose weight is a recurring theme which starts with gusto and swiftly ends with gusto – usually with the Valentine chocolates.  I am going to start and stick to an exercise regimen.  Yes!  Except that I have not decided which year this is to begin.  Since I make the resolution at midnight I should begin on New Year’s Day.  If I have stayed up until midnight I am too tired to start that day, and by January 2nd the enthusiasm has curbed to the point of lethargy and there is a book somewhere that is calling me.  How much more civilized to exercise in such a peaceful, restful, and for me the necessary occupation of reading a good book while swaddled in a soft throw and curled in my favourite chair.  The mind needs exercise too!

This year I am transitioning from the ridiculous to the sublime of resolution making.  No resolutions, just   a word and determination.  Walking in light, seeing the light, being the light is incredible conceit, a pipe dream, or maybe setting me up for failure.  Yet I think, even though it is only day five, that I will succeed better than I have ever done before. 

Living with a loved one with Alzheimer disease is living in darkness.  Caregivers know that because until this we have lived in light.  This is my first purposeful plan that is not me focused.  This is for my Bert.  My Bert needs light.  He needs to see the light outside, inside and see me as light.  His happiness is my light, my happiness is his light.  Caregivers live for two.  I want to shine a light for my Bert, for other caregivers and everyone I meet.  Still I am being selfish as I believe I will benefit the most if I succeed.

This is also the first plan that will perforce depend on outside help.  It is family, Lifeliners, friends, counsellors, my support system who will walk in the light with me, seek to see the light with me and encourage me in my efforts to be the light.  They know and they care.

The Meander:   “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” — Helen Keller

This is from someone who knew the dark intimately.  I wonder how invincible I can be against Alzheimer disease.   Then again it is not a ‘difficulty’ it’s a disease. I do not have to be invincible.   Come walk in the light with me.