Me and My Shadow

 

I have a human shadow and he is my Bert, my husband.  I am not unique as any caregiver of a person with dementia will tell you. There is this phenomenon called Shadowing with which we are intimately familiar.

As the name suggests Shadowing is when persons with Alzheimer’s and other types of dementia follow their caregivers around 24/7.  They become agitated even suffer anxiety attacks when the caregiver is not in sight. I do mean ‘when not in sight’ every minute, every hour of every day.

Caregivers are literally the life preservers, security blankets, the one safe, known aspect to a brain gone berserk.  This brings certain challenges and yes, some hilarity to a caregiver’s existence. Shadowing is the epitome of claustrophobia. The caregiver feels confined. You are never allowed to be alone. I knew I was in trouble when at a formal luncheon I went to the washroom and left the stall door open in case Bert missed me and came looking for me!

Ask any caregiver and you will find out we subscribe to a very special ‘open door policy’.  Having a shower or bath is challenging as you know you will be interrupted.  So why not lock the door?  Because you do not want to put your loved through the anxiety, the agitation, the panic that comes if he or she cannot see you.

My computer desk is perhaps 12 steps from Bert’s chair but in the middle of doing emails, or writing I will feel his presence and hear: “I miss you.”  My Lifeline Group and I have much to discuss once we begin to talk about Shadowing.

At times it can result in mishaps. To be close to you your loved one may ask repeatedly to ‘help’ you, and there are tasks they can do. However, you have to tell them in detail, one step at a time when any new task is attempted. So this day Jackie is making a pot roast. It simmering nicely and now she is making a salad when Bob keeps pestering asking to ‘help’.  Ah, he can wash the greens.  Both are happy. Jackie looks away for a minute, turns around and the greens are in the pot with the roast, simmering away!

When Jackie told me this a day later she was still seething, but the universe having blessed me with a weird sense of humour and a wild imagination, I started to laugh.

“So, did you make green roast and gravy?”

Soon, Jackie joined in and we roared. I kept seeing spring greens simmering away with a pot roast.

“Oh Paula, thanks.  I needed to laugh.  The worst thing was that I was livid and he was quite unconcerned about the whole thing.  He was just happy he was with me in the kitchen helping me, while I just saw the mess I had to clean up and wondering how to salvage the roast!”

Caregivers are tired and Shadowing contributes to that.  In my instance just as I am in a deep sleep Bert will get up, see an arm or a leg exposed, so he has to cover it.  At other times he does need the reassurance that I am there so he wakes me to tell me he loves me, or strokes my arm, or calls my name.  So now I am awake, he is happy that I am there and soon is snoring away.  I rarely get back to sleep. Yet as morning approaches you are on call doing everything for two.

Shadowing results from an illness.  Caregivers adapt. It is what causes Shadowing that is the greater stress.  When claustrophobia sets in we are not and cannot be angry with our loved ones, we must always remember ‘it is the disease’.  I hate Alzheimer’s disease.

As my Bert loses the present, I remember the past, the times ‘when’.  Then interruptions, loving gestures and expressions happened for a reason and were logical, not the cloying manifestations of a dread disease.  Now even those memories of times past, though good, are tinged with regret as now  I must remember for two.

The Meander: The conundrum of Shadowing is also the Alzheimer’s conundrum: There is sadness in the happiness and happiness in the sadness and the glue between the two is the absolute faith and trust of our loved ones in us, the caregivers.  Awesome!

I Live With A Toddler

I live with a toddler!

Oh joy, oh bliss.

He can be the sweetest or most obstreperous kid alive

Exasperating and at the same time totally lovable.

Contrary, cantankerous and stubborn then meek, sweetly obedient, loving and caring.

Most used words: “No”,” Why”, “I don’t want to”

Most used phrases; “I love you”; I miss you”; “Where were you?”

Most frequent activity: Sitting in ‘his’ chair, eating, sleeping,  going out for a drive, hugging me, always teasing.

His blue eyes fade when angry, anxious, fearful, hurting or lonely.

When all is well they become deep twin bluebirds of happiness

They shine that perfect Dutch Delft blue.

He chortles with glee at the simplest of pleasures,

He twinkles when he wins the battle,

He beams with love.

 

He cries in sadness and in happiness.  He is happy when I am happy and sad when I am sad.

 

But best of all he makes me laugh.

My toddler is uniquely mine

My toddler is 85 going on 5

My toddler is my husband

His eyes glisten when he speaks of love…our love!

The Meander: ‘Life would be tragic if it weren’t funny.’ – Stephen Hawking.

 

It’s Lewy Body

Even a fly on the wall would be completely nonplussed if it could listen in on some of the conversations of my Lifeline Group.  When we are in Alzheimer’s world we speak a different language.  Statements and opinions voiced in the most casual manner  would be nonsensical and also incomprehensible to others.

This morning we are having a caregivers only session.  Jim comes in with a sigh and says:

“Ladies, I think I have crossed over into the Lewy-Body camp.”

I was puzzled but, before I go any further a note of explanation is needed.  Alzheimer’s disease is the most common cause of dementia.  Another is Lewy Body.  There are many types of dementia.  Each one exhibits a particular set of symptoms that help clinicians to identify the type of dementia the patient has.  Each type has some dominant traits and a different enough pathology that help to identify the particular disease. Diagnosis is not easy.

Lewy Body is absolutely fascinating to me and one that is most often misdiagnosed as Parkinson’s disease another type of dementia.  Sometimes it is diagnosed as Dementia with Lewy Bodies since the name refers to particular proteins that form inside nerve cells in the brain and play havoc with them.  I used to interpret the phrase as  Alzheimer’s Disease with Lewy Bodies as I, in the beginning,  equated Alzheimer’s Disease with dementia. That is not the case. Alzheimer’s Disease and Lewy Body are two different diseases that cause dementia.

The dominant symptom of someone with Lewy Body is that they have hallucinations.  This  now becomes a little more complicated because hallucinations can  and do occur with other dementia.  Since the caregiver is the one to observe and see the  manifestation of this particular behaviour he or she must be careful to identify it as hallucinations and not  delusions.  Delusions are a different kettle of fish.  Simply put a delusion is where the patient complains that someone has stolen money from them while an hallucination would be to see money which does not exist. This is course 201 at Alzheimer’s university so we caregivers know the difference. Clear as mud, right?

My fascination comes from the fact that if you are a patient with Lewy Body dementia your hallucinations are unique to you.   It took me a while to wrap my head around it as the person with Lewy Body sees, hears, tastes, and interacts with people and things that are just not there.  It is not an imaginary world.  It is absolutely real. It is their world and to them it is perfectly logical. But let’s go back to Jim.

“What do you mean you have crossed over?” I asked.

“Well yesterday we were going to the day programme. I helped Carol into the van and then went around to the driver’s side, got in and then sat.  I did not move and when Carol did not say anything I asked if I could drive off.  She said ‘yes’. I turned to her and asked what about the other Jims.”

“Oh, it’s OK. You can go.  The other Jims are not coming today, only you.”

Jim turned to me and in all seriousness said: “You see, I was so used to having to wait for all the Jims to get in the car before I could drive anywhere that I was waiting for them to get in.”

I cracked up.  Jim joined in and soon we were reaching for tissues, so hard we were laughing.  I apologized and he said “Why?  It is funny!” And off we went again into the wonderful healing land of laughter.

I told him he did not have to worry about crossing over until he started to see clones of himself getting into the van. More laughter.

Jim has a marvellous sense of humour. Over the years he has regaled us with the special challenges of living with a person with Lewy Body dementia.  He has had to eat dinner with five other Jims and been asked if he did not like his dinner as he was the only one to leave anything on his plate. He has been told to go find the glasses or the keys at the other house.  At one time there were three homes and five Jims.  The three homes are not talked about much now but various deceased family members have been added to the mix.   The multiple Jims are alive and well and live with Carol. To Carol they are all very real.  No wonder he is discombobulated.

Carol is sweet, gentle and kind but you can see she has quite a bit of steel in her backbone.  We all wished we had known her ‘when’.  I always have a little bonus hug for her. She has a wry sense of humour and a lovely smile.

My Bert really likes Jim.  He calls him the ‘big guy’ since he does not remember names and Jim is a big guy.  Jim has a lovely way with Bert.  They love to tease each other. We ‘ladies’ as Jim calls us hold him in high regard.  We all have our challenges. Jim’s is the same yet different.  We are coping.

The Meander:  My Lifeline Group should be called the laughing group.  We have the gift of laughter and are able to see both the sublime and the ridiculous in the challenging journey we travel with our loved ones.

Now we are nine

It is a universal truth that we will die, but as a caregiver that reality takes on an immediacy that is incomprehensible to those who do not travel this journey.  Yet it is still shrouded in mystery.   It is a wallpaper always in the background of every new observance of slow deterioration. Yes, we will die and yes, we are caring for someone who is slowly dying.  There is a reason that Alzheimer’s disease is referred to as a ‘Slow death’.  Yet, like all of us we do not know when or how or even where.

Current statistics state that 80 percent of caregiver’s will suffer from depression. Not documented is the percentage of caregivers who die before the one with dementia.  That happens and I would hazard a guess it occurs more frequently than reported.  My Lifeline Group often voice the sentiment that they do not want to die before their spouses.  We all want to care for our loved ones until the end.  Yet we know we have no control over that.  This fear is just one of the rungs on the ladder of depression.

The fact is that Alzheimer’s disease leads to death.  We acknowledge that but when it happens it is no less traumatic than any other passing of a loved one. So we experienced a deep sadness when our Lifeline Group of five couples was reduced to nine. One in the family had died.  We mourned together.  We could not help but wonder who would be next.

When I got the news a year ago today, it hurt.  I had to mark the moment somehow so I sat and wrote:

Now we are 9                                                                                

We met by chance but perhaps not

We ten self-selected from a disparate group

United by the ever mutating forgetfulness

Of partners here but not here; changed yet unchanging

Living in two worlds; alternate realities.

We ten bonded deciding to share, to care, to laugh, to love, to live.

There is just one escape, we know it

It is the same for all – the ultimate equalizer.

We refused to speculate or predict

How could we?

Each day, learning, all effort focussed on doing, doing, doing.

Each day new, unexpected, mysterious, unknown, surprising,

Each day its own journey within the journey

Now the news – one is gone.

We contemplate the expected unexpected and wonder

We are sad for the death and sadder for the living.

We mourn the loss

We – the Ten that are now

The 9.

The Meander: It is good we do not know the future and it does no good to speculate.  One day at a time is the way we must live as each one is new, different and unique to each of us.  We carry on, we share and we continue to care for each other.  Today my heart sighs for the two who is now the one.

Alzheimer’s University

 

Alzheimer’s University

My Lifeline Group is very well educated.  We are all geniuses.  It is a requirement if we are to be successful at Alzheimer’s University. The tagline for my blog is Standing Still is not an Option.  At Alzheimer’s University failure is not an option.

Truth be told I think we are still at the first year level, so arduous and complex is this University.  At this university first year may span one year or four years or more.  An Alzheimer’s degree is a multi-disciplinary degree with many courses.  No specialization offered as we have to do every course no matter how arcane it seems or whether we have an interest in the subject or not.  We must slog through the many topics. So with tongue firmly in cheek, here are a few of the courses:

Mastering questions – the same ones at least five times in thirty minutes in year one.  By year three it may be ten in ten minutes.

Seeking Logic in the illogical -Advanced Seminar that may have you being five persons, literally.

Confronting stigma – this is a much needed course to face the world and explain: “It’s a disease”.

Comedy unCentral – seeing the ridiculous in clearly highly emotional and terrifying moments.

Continuous patience module – you are required to show more and more patience in increasingly  stultifying and incrementally frustrating moments and which will include seeking divine intervention!

Living in two worlds – a core subject in which you learn to identify the real and Alzheimer’s world and find the ability to move between the two seamlessly.

Therapeutic lying, master’s level– a practicum

Creative thinking and solutions to banal issues like hiding the tooth cup or spraying the alligator away.

Accepting the abnormal as normal as in looking for the bread basket in the laundry room, in the washer.

Putting yourself first – a required course for caregivers. Success in this gives you a Ph.D degree.  This one is taught every semester for as long as the journey lasts and is almost unattainable. As I write this I can imagine fellow caregivers proclaiming sarcastically: “As if’!

Eliminating Tiredness – a professor is still being sought to teach this course. Qualified applicants may apply here!

The Meander: As the journey unfolds each of these ‘subjects’ will have a post or two.  Each day brings new insights.  I will share them willingly in the hope it brings a smile or some new understanding of this special path we caregivers travel together. (Illustration courtesy of Pixaby)

 

Gratitude art

Gratitude Art.

I cannot draw to save my life.  Even my stick figures look rather strange.   It is so bad that in high school when it was discovered that Latin was a particular challenge I was encouraged to take art as an alternative.  I was happy.  How difficult could that be? Also I liked art from a spectator’s point of view.  Three weeks into the artistic experiment I was back to Latin with a note which indicated that I cannot be as bad at Latin as I am at art.

I am glad I conquered Latin.  However, I still loved art enough to do some art appreciation courses later on.  Also, I know without a doubt that I am vital to art and artists.  My reasoning is as follows:  If everyone was an artist who would appreciate the art?  I am definitely in the art appreciation camp. I revere those who can and am first in line to show appreciation.

Fast forward many years and as a result of Alzheimer’s my art has been hung in an art gallery. I can claim to be a curated and hung artist. Will wonders never cease?

I do know my limitations but when it comes to my Bert there are no limits so off I went gallantly with him to art therapy.  It was interesting to attend as it was held in a historical home and museum.  After the usual tour and tea the project was to create a work that illustrated gratitude, or something for which we were  grateful. I decided I would help Bert with his idea and interpretation rather than show my ineptitude.  That was not to be.  I was told everyone had to produce something.

Bert did not need my help.  In no time he had drawn something that looked like a house with a figure in it.  He told our wonderful art therapist that it was me at home. He told her that meeting me was the best thing that ever happened to him.  Awhh.  That’s my Bert.

However, remember I cannot draw period, so I could not return the compliment. I went the modernist route to create a ‘thought’.  Yes!

We had paints, canvas, dowels, string, shiny buttons, sequins.  My creation was a wall hanging using mixed media.  I used a pretty crystal studded button and if you look carefully the squiggly thingie in the middle is embellished with sequins.  Yes, even I have trouble with an adequate description of this masterpiece.

So here it is followed by the ‘artist’s note’.

My Gratitude Hanger.

This represents a positive attitude and sunny disposition.  The colours are bright, happy, and sunny with sparkly embellishments to represent certain intense moments of happiness.

Friends and family have spoken of my happy outlook.  Many have told me that when they are feeling down they call me and know that they will have a brighter outlook afterwards.

Look and you will and see the tears, but they are dominated even overwhelmed by HAPPY and reach upwards to become the streamer of a kite? A bird? Wings?

It was in middle age that I finally realized that this quality so obvious to the people I meet was a wonderful gift.  Now I recognize that as a fact and I am immensely GRATEFUL!

Come on stop laughing!  It’s not that awful.  Maybe it is. When I proudly presented it together with the catalogue, which also featured my work and photographs of the exhibit to our son, he looked at it made a noise that sounded like “Huh!” and said: “Mom, you are a better writer than artist”.

OK, I’ll take that! “Huh!” Everybody is a critic. “Huh!”

The Meander: Look at my big grin and the proud stance of my Bert. Priceless!

Be Careful What You Wish For

The day started out as usual.  It was a WWWW (Wonderful Wild and Wacky Wednesday) and Minds in Motion was not in session so that meant the Lifeline group (See previous post: My Lifeline) would be meeting at Artisano Bakery Cafe.  It is always a positive day.  Bert was happy when I told him where we were going. He does not remember the ‘friends’ from one week to the next though he recognizes them when he sees them and he knows they are ‘nice people’. He says he likes that I laugh and talk with the ‘girls’. I asked about his time and he says the ‘fellows’ are nice too and they like to tease each other.

Let me explain about the seating arrangements when we go to Artisano.  Caregivers sit together on one end of the table and our spouses sit together at the other end.  Just one slight aberration in that there are five couples four of whom comprise a female caregiver and male spouse. That means the male caregiver is sitting with the men while his wife sits with the women. We try to engage and involve the female patient in the conversation and most times it works but we do feel some sympathy for her husband who must stick handle through stories that are the same week after week. He has become most adept at doing that and succeeds in bringing a bit of variety to the proceedings.

This day we had finished our updates.  Everyone was upbeat. We had all had a few nights of uninterrupted sleep.  Always welcomed. One had a recommendation for a resource and, we reminded each other to register for the next Minds in Motion session as they get filled up fast. The conversation turned to things we wished could be.  We talked about plans that are now on hold, dreams that would remain unfulfilled.

Our male caregiver and I had just gone through a scheduled assessment with our spouses and the results turned out the same.  Our respective spouses were now 4-5 years old, mentally. I spontaneously and in frustration said: “Be careful what you wish for.  I have been wishing and hoping for years for a grandchild but I never expected it to be my husband”. There was a pregnant pause and then the laughter broke out.  I roared and all the others joined in.

We were all in tears as we laughed uncontrollably.  We could not look at each other.  Our female patient looked totally at a loss even as she laughed along.  Her husband, who had heard the remark, was shaking with laughter.  Then Bert looked over at us and said: “Well, they are having a good time”.  O, my aching stomach!  That set us off even more.  Then I wondered out loud if that would make him his own grandpa like that old ditty. More stitches. Stop.  Please stop.  That was the day we were certain the next day’s headline would read: ‘Noisy seniors evicted from coffee shop.’

The meander: We all know that laughter is the best medicine.  We prove it among ourselves and make sure we laugh at least once a day.  No, we were not booted out. Thank goodness.

My Lifeline

My lifeline

Why is my WWWW (wonderful wild and wacky Wednesday) group so important to me? Let me count the ways:

They are the people, a special group of friends with whom I can talk about anything  Alzheimer’s  and not start from the beginning each time.  The conversation is continuous.

They understand at the most profound level what the journey entails.

They make things seem normal, whatever that means for that moment.

No self-censorship is necessary; no massaging of the message or making things look pretty.  Instead we share to learn more.

When one says: “Last night we had a big flare up” a fire does not come to mind but we ask instead: “Did you have to go to the Emergency?”

If I say that a couple more cells died yesterday. No-one looks quizzical or thinks I am ill but will instead ask: “New behaviour?  What did you notice?”

If we ask another if he is the husband today and he answers that he thinks he was number four earlier but could be number two at the moment, we know exactly what he is saying and nod sagely.

We throw around words like, Fronto-temporal dementia or Pick’s disease, Lewy body, vascular dementia, plaques and tangles and many other convoluted and quasi-medical profundities that we are just beginning to decipher and that are specific to dementia. It has its own unique jargon and we are so adept at it.

We sigh at shadowing, anxiety attacks, hallucinations, sundowner syndrome.

We are multilingual or at the least bilingual. So proficient are we at Alzheimer Speak.

We hug and can feel the comfort pass from one to the other.  I believe in the magic of hugs.  It works.

We also live in two worlds. Not an imaginary world or a fantasy world. Those worlds you conjure up and are able to control.  No.  We live in two complete, separate worlds. The real world and that alternate reality which is Alzheimer’s world.  We are true geniuses.

The Meander:  The company of friends, of people in the same boat who can laugh with you and lighten the darkness, who walk the road with you, who care and share is the caregiver’s lifeline.

WWWW means Wonderful, Wild and Wacky Wednesdays

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.

Caregivers are nurturers in reverse

Caregivers are nurturers in reverse.

Think about the euphoria when your baby  was born.  You held the tiny mewling human being with love and tenderness and you started to plan and to envision a future full of hope and dreams.

This life is entrusted to you, to care for, to direct, to teach all that is necessary to provide a foundation for a life yet to be lived.  You could be holding the next Prime Minister/doctor/teacher/entrepreneur. The possibilities are endless.  You try to conjure up the passages of life: Graduation, marriage, children, success in whatever they choose to do in their life.

Now consider dementia.  You have achieved so much.  You have the children, have enjoyed a satisfying career, have made a name for yourself as a businessman, have loved what you did as work or study.  You have enjoyed pleasures untold, participated in events that are uplifting, awe inspiring. You have lived.  Then comes dementia.

As a caregiver you are given this awesome task to begin  the nurturing process again. To teach, to train, to protect, to guide, and to do the things that you did as you cared for your child.  You remember how to kiss away the hurt.  You plan your life to be there, always there.  You live in two realities.  You think and see and hear and plan and live for two.

When your child is born you look forward with hope and joy.  When your loved one has dementia you look forward with trepidation.  Your child is a beginning.  Your loved with dementia is an ending. You have the complete responsibility for both.  You anticipate the next step with both.  Your parental and caring skills are in high demand for both. The difference is that one was your child, the other is your husband, partner, mother, father, sister, brother, friend. You try to process that and realize the full extent of the chasm that  yawns between the dreams for your child and the imagined nightmare from this time forward.

Those stages you anticipated with love is a progression with your child that you see through 18 years or more.  Your loved one also exhibits stages of progression of dementia which you could be living through for 18 years or more – still with love.

The Meander:  Acknowledging the reality is the first step to coping.  Then look in  your loved ones eyes. See the absolute trust they have in you. Know that absolute trust brings absolute responsibility.  You are their world. Know that you are the most loved person in the world. Awesome.