Lifeliners Friendship Songs

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

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

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

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

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

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

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

Alzheimer’s World

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

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

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

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

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

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

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

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

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

The Drop Sheet

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

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

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

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

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

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

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

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

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

“Why did another company do the delivery?”

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

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

“ Um, forty-five dollars.”

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

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

“Oh, Yes. That would be good.”

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

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

Bert sold his company in 1995.

….

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

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

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

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

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

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

Laughing with Love

A Dutch music video is playing and Bert is watching and singing along. It is set in a typical Dutch cafe and the music is upbeat and joyful.  He tells me that all the people are Dutch from Brabant.  He says people from Brabant are happy and full of fun.  Maybe that is true.  He is from Brabant. He is full of fun.  He is happy.

The phone rings. I recognize the number.  It is Jim. I am immediately apprehensive as Carol, his wife, has not been doing well lately.

“Hello”.

“Hi Paula, it’s Jim. I have something for your blog.”   No, I do not need to be worried as I can hear a smile in his voice.

“Oh, what have you got?”

He begins to laugh as he explains; “Well, it is about Carol’s mechanical cat.”

I start to smile as our group has been having some laughs about this cat since Carol got it.  I should explain that this is a ‘comfort pet’.  Comfort Pets are specifically manufactured to help people with various ailments deal with their illnesses.  They have been a staple at children’s hospitals, cancer facilities, hospices for years but now they are also being made and used for helping persons with dementia. There is the talking parrot, the dog and the cat.  They are both substitute companions and respite for caregivers.  Being electronic they interact in a number of ways and exhibit behaviours congruent to their species.  The parrot talks, the dog barks, the cat meows, purrs, cuddles and so on.  They are huggable, amazingly lifelike and easy care as there is no litter, walking, feeding or any of the care and demands required by a real pet.

“Carol goes to bed early, and the cat goes to bed with her” Jim continues.   “When I turn in later, I first take the cat away, turn it off and put it away for the night. If I do not turn it off it will meow at intervals and disturb our sleep. I was fast asleep when I felt a scratching, a kind of stroking and tickling at my neck.  Groggily, I tried to brush it away. The scratching came back and I felt Carol’s hand at my neck. She was doing the scratching, and she seemed to be getting frustrated and digging harder into my neck.  Then the penny dropped.  Carol was stroking the cat and was puzzled that the cat was not responding.  Now I had to think quickly: ‘Do I purr, meow, stretch out lazily or what?’  I could not remember what the cat did when that particular sensor was stroked.  I purred!”

Of course, by now we are both laughing so hard.

“Oh, well, at least you are a well loved comfort toy.”

“Yes.  That I am.”

“Thanks, Jim. I am sure I will have a post from this.”

Laughter helps.  On a not so good day a laugh will make it a little better.  Just a few days earlier, Jackie was having a bad day.  Jim called to tell her about returning home and noticing a large wet spot on the bed.  On investigation, Carol admitted to ‘giving the cat a bath’.  That made Jackie’s day.  It did not solve her particular problem but it made it look less hopeless as she laughed.  Jim thinks Carol has finally got it that the cat’s food is a battery. She had wanted to feed it. Next lesson is one or maybe twenty on you do not bathe a cat.

When the time comes I think I will get Bert a dog.  I will have to weigh the pros and cons carefully. After all you do bathe dogs but as for food, thanks to Jim, I will start the training early about the battery as the only food required.

The Meander:  My Lifeline group – Lifers- share our stories, our risible moments willingly.  We are incredible support for each other and even more important, we are friends.  We laugh a lot but never, ever at our loved ones.  When we laugh we thumb our noses at this terrible and terrifying disease.  It is our defiance and defense.  Otherwise, we would cry.

 

 

Something Worse 05/22/2017

The T.V. is on

An intrusive susurration

Barely audible

I hear, I do not listen

My thoughts are inward, personal,

Dark

Created from fear

Not knowing what lies ahead

Afraid to speculate

So tired, breathing is onerous

Brain at rest is wishful thinking

Sleep deprived too often a descriptive companion

Sleep is a roiling, swirling maelstrom,

Too vigilant to be peaceful

Thinking, doing, planning remembering for two

Forgetting self

Learning new unwanted skills

A logistical nightmare

Endless.

Tears make tracks down my face.

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

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

Breath caught…Breathe, just breathe.

No, dementia is not the worst.

This is.

 

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

 

 

Therapeutic Lying

I Lie!

“Gerard is coming tomorrow and we are going fishing. You have to come with us.”

“Oh.  When did he arrange that?” I ask.   My Bert hesitates and then: “Yesterday.”

Gerard, Bert’s brother, died last December.  But I say: “OK.  I will go with you but I am going to take a book.”  My Bert laughs.  “You can’t fish with a book.  I will get worms.”  Ah! Here is a nugget of reality for me to hold onto. He knows you do not fish with a book but need worms.

It is evening and Bert is looking sad.  Something is bothering him.  I can tell.  He is picking at his fingernails.  He does that when he is worried, anxious, confused.  I ask him what the matter is.  I hold his hands; put my forehead on his, which calms him; he looks up at me and I see fear and puzzlement in his eyes.

“Moeder has not come to see me for a long time.  She does not call me.  It is more than a month that I have not heard from her.” Bert’s mother died, if I remember correctly, in 1982.

“Oh, you do not have to worry.  She is so very busy. You know Moeder is always busy.  She will call you soon.  Do you want a cup of tea?” “Yes, and a cookie too?” he says with a smile.  His hands are still. I answer:  “You and your sweet tooth!  One cup of tea and maybe two cookies coming up.” The sadness is gone, the moment has passed.

That is therapeutic lying.

The first time I heard the phrase my immediate thought was: “Now that is one heck of an oxymoron if ever there was one.”  Little did I know this act would become a staple in my collection of strategies to deal with my Bert and Alzheimer’s disease.

We are taught not to tell lies.  However, we do know about those little white lies, the big whoppers and in Jamaica there is one called a ‘bare faced lie’ which is a lie told to you by someone who looks you in the eye and utters the most egregious lie without the slightest qualm. None of these are therapeutic lying.

Therapeutic lying is a very effective tool every caregiver learns to use.  Like most learned behaviours  you get better at it as time goes by. The more you do it, the better you are at it.  You do it not just for your loved one but also for yourself.  Of course we are going on a fishing trip; Bert’s mother will get in touch ‘soon’. Bert is reassured; I do not have to begin a long explanation of their deaths. No when, where, how nor why he did not know about them.  I do not have to say why we will not be going on a fishing trip with Gerard. I deflect with the offer of tea which my Bert could drink all day, and yes, he does like his cookies and cakes and ice cream or anything sweet.

My Bert attends an Adult Day Programme two days a week.  I would not tell him he is in adult day care which in essence that’s what it is.  No.  He goes to his club. A little therapeutic lying maintains his dignity.

So now I lie. I lie more than I would like but without any regret.  When I lie therapeutically I am showing my love for my Bert. This kind of lying maintains dignity, relieves stress, calms anxiety, provides solace, is a mood enhancer, a bonding technique and saves time which is precious to every caregiver.

Therapeutic lying is good for communication too. It can be the trigger to finding topics of conversation appropriate to my Bert’s interests.  I do fish with a book.  The baited line in one hand and the book in the other, so the next day or two weeks later I talk with my Bert about fishing and how I caught fish while reading a book.  We laugh. Photographs of his mother can bring a multitude of stories.  My Lifers have heard some of them.

The Meander:   Within the maelstrom that is Bert’s brain, time, people, places and events are all muddled. ‘Soon’, ‘yesterday’, ‘tomorrow’ are meaningless.  Yet at times those single words are the sum total of a therapeutic lie.  They are simple and yet so effective.  Some thoughts though lie too deep for tears or lies, any lies.

 

 

 

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.

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)

 

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.