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!

“If Music Be the Food of Love, Play on”.

“If music be the food of love, play on.”

This was the quote of the evening.

My grandmother was a staunch member of the Women’s Institute.  Anyone remember that?  The programmes were designed to educate and ‘elevate’. She looked forward to the meetings which happened once a month.  Well, they should be once a month, but it seemed that any project going involved extra meetings, extra work and my grandmother.  Our living room was often usurped by some project or another.

On this particular meeting night my grandmother was running late and it was mandated that when the attendance was taken instead of answering with ‘present’, ‘here’, or holding up a hand you had to declare your presence by saying a sentence that contained the word ‘music’.   No doubt the elevating subject for that night was music.  A Royal Doulton tea cup would be the prize given to the person whose quote was voted the best of the evening.

As grandma rushed to get out the door she called to me and said: “What can I say that has music in it.”  I told her to say: “If music be the food of Love play on”.

“Who said it? I can’t just say a quote.  I have to say where it comes from, at least who the author is.”  Then she laughed and said:

“Julie says she can’t think of anything so she is just going to say: ‘Gertie plays great music on her organ, I say it.’ ”

Julie was grandma’s very good friend and was full of fun.  It would not have surprised anyone if she did just as she told Grandma.  I loved when she visited as Jennifer, her granddaughter, would come too and then I had a very compatible companion.  We were supposed to be busy with home work, but often we tried to listen in on their chatting as they laughed a lot and we wanted in on the joke.  Turned out it was not funny to us, just boring.

“The quote was written by Shakespeare and it is from his play Twelfth Night”.  I did not have to think twice about this as luckily this was the play we were studying at school.

“Just Shakespeare is enough”.  A delighted grandma shouted a “thank you” as she went out the door muttering; “If music be….Shakespeare”.  I was asleep when she got back from her meeting.

Next morning I got a great big hug and from a beaming grandma who declared: “Thanks, darling, my quote was the quote of the evening”. She showed me the beautiful tea cup she had received.

“I also got a standing ovation!” I thought she was exaggerating until I got confirmation. Sunday morning after service two women came up to my grandma and instead of the usual ‘Good morning’, it was a giggly: “If music be the food of love, play on”.

Julie came running up and in a loud voice declared: “Gertie,  let me tell you my dear that food, music and love make one great combination.” Then she twirled and declared as only she could:  “If music be the food of love, play on, Sister!”

I can still see it all in my mind’s eye, a laughing grandma, two giggly women, one twirling, too loud gesticulating woman and me in the midst with the biggest grin on my face.

The Meander: Memories of childhood are like pop ups.  They appear suddenly and insinuate themselves in the middle of whatever you are doing.  Instead of irritating they are moments to treasure. They are comforting.  They are adult security blankets.  This memory for me underlines the oft spoken adage that the simplest things bring the greatest joy. I wish everyone happy childhood memories.

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.

A most Unusual Birthday

We were in the middle of eating an authentic delicious gourmet Indonesian dinner in Sanur, Bali. It was Valentine’s Day and Duncan, our ‘Dutch son’, met only a week previously, was celebrating his birthday.

He had asked the hotel owners Semadi and Rini, to prepare a special Indonesian meal to mark the occasion.  You can do that when your winter home/hotel is family owned, small, where staff and guests mingle, and guests are treated like family. There were eight of us including Semadi and Rini.

We were teasing Duncan about being a Valentine’s baby when I made the observation that my birthday was also a special day as I was born on the first day of Spring, March 21st.  A look passed between Semadi and Rini.  Rini sighed and when I asked what the matter was she said: “That is Nyepi, our Day of Silence our Bail New Year.  This year (1996) it falls on March 21st”.

Nyepi perhaps the most important religious and culturally significant day of the year.  When a Balinese say it is a Day of Silence they mean it.  No driving except for emergency vehicles, no planes arriving, no cooking, little or no work, no entertainment.  You stay indoors.  There are no Hindu ceremonies on Nyepi in a country which has ceremonies happening almost hourly somewhere on every other day. Devout Balinese Hindus will fast and not speak on Nyepi.

Hotels receive special permission to provide services but tourists are asked to respect this important day and so service is minimal. You are not allowed to go to the beaches. Anyone on the street must have permission from the town council to be out and about and there are security forces to enforce the laws.  I could not wait!

There is excitement all around.  The kitchen staff has been preparing meals for two days and today is March 20th.  Bert and I are up at dawn as we have decided to drive to the Mother Temple, Besakih at the foot of Mt. Agung to witness a bit of EKA DASA RUDRA the 100 year ceremonies and sacrifices. It would take a book to write about the religion of Bali. Suffice it to say that I learned as much as I could in the three months we lived there.  It is all a question of balance between heaven, the earth and nature.  There is good and there is evil.  Accordingly, good cannot conquer evil nor can evil conquer good therefore it is imperative that one respects both.

It was an excruciatingly slow but fascinating drive to Besakih. It seemed all roads led to the Mother Temple and it was a sight to behold.  The beautifully dressed and adorned young women and young men in their sarongs marching up to the temple are indescribable.  The costumes had all the colours of the rainbow and more. There were colourful umbrellas, flowers and garlands and towering headdresses.  The fruit and flowers, effigies and offerings were also colourful. To see them all kneeling, actually sitting in large groups at the temple complex was overwhelming.

Sad to say we did not see the sacrifices as we were too early and I am not sure we would have been allowed to observe them.  Also, we had to leave to get back to watch the Ogoh-Ogoh parade.  As we walked around, the Balinese people, warm, extremely friendly, happy and most welcoming explained the ceremonies and celebrations and told us we had to see Ogoh-Ogoh.

What is Ogoh-Ogoh?  Ogoh-Ogoh are giant statues of demons that represent all that is ugly, negative, and evil.  They are the ugliest creations anyone can imagine.  They are paraded through the streets the evening before Nyepi.

Ogoh-Ogoh sit on large bamboo frames, carried by young men.  For many weeks groups from the various communities have been creating them.  They are grotesque, the stuff of nightmares.  Imagine the most vivid depiction of ogres, horror, and phantoms.  They are terrifying, gaudily painted and menacing as they come weaving down the street. This is evil imaginatively portrayed.  This is their night and they tower over us.  They can be five metres high!  They will rule until sunrise.  It is a fearsome spectacle.  The parade usually ends at a field where they are burned.

The festivities now over, everyone go home to prepare for Nyepi. You must be home and silent so any negativity or evil spirit still wandering about cannot find you and enter your body to corrupt you or bring you bad luck for the coming year.  It is thought that when the evil spirits come out they will not see anyone around, decide that Bali is empty and leave.

The next day, Nyepi, is a day for introspection and meditation and silence.  For three days before this day you have cleansed yourself, you have been to the temple with your gifts and have acknowledged the evil ones and now this day you pray, fast, meditate and think good thoughts for good luck in the coming year.

My cold birthday dinner was eaten in half light. It was very quietly shared with all guests and staff in residence at the time.  Silence was broken by close family and friends including our new ‘son’, calling to wish me a happy birthday.  The conversations were very short.   It’s Nyepi, after all.

I would not have missed this for all the tea in China.

The Meander:  The festivities and Ogoh-Ogoh were far more interesting than Nyepi.   A Bacchanal is fun. Being good takes some effort.  In retrospect we  have a similar celebration but without the demons.   New Year’s Eve is certainly the night to let loose, to have fun and throw off the shackles of the old year.  Come New Year’s Day we get busy with the good resolutions.

We are still Mum and Papa to our Dutch son.

(Pixaby images)