I Am Thankful

Gratitude n. being thankful, appreciation of and inclination to return kindness.

I believe that every day there is something for which we can all be grateful.  It can be small or large, internal or external.  It can encompass all nature, thought, the physical as well as the meditative.  No doubt you have heard the variation of the theme of being alive.  The simple, polite inquiry of: “How are you?” will bring an answer like: “Well, I’m still alive” or: “I woke up this morning so everything is good.” My favourite answer is: “Well, I am still on the right side of the grass.”  That always brings a smile to my face.  I am grateful for that smile.

However, these last few days I have been filled with a special kind of gratitude.  It is one that came after my unwanted but necessary visit to the ER.  I am feeling poorly, in pain and my number one priority is the care for my Bert.  How will I cope?  There are so many little chores to see to, too many to count.   I was worried but I should not have been.   We are blessed by having the sort of neighbours and friends that come to your aid swiftly, competently, caringly, without question.

I am grateful to the Lifeliner who was at the door to pick up the prescriptions and get them filled.  I am grateful for the neighbour who instantly took away the worry of getting my Bert to his Day Programme.  “Just tell me what time to pick him up and I will take him.”   How precious an offer that was.  Here is someone my Bert will find familiar enough to accompany without a fuss.  I can go back to sleep and with the Valium still coursing through my body, I have no choice, really.

Then there is the neighbour who brought dinner in a beautiful wicker basket which had everything including two lovely serviettes, such a cheerful and most welcomed gift.

I am grateful to the Lifeliners who could give practical, hands-on help and those who could not who sent words of cheer, good wishes and prayers.   I even got instructions to turn off the phone.

Once friends heard, the offers kept on coming with a couple wondering why I had not called immediately.  When I explained that I was calling the ambulance at 2 A.M. the reply was: “You can call me at anytime.  You know that.”  Yes, I do and I am grateful.

Our family of friends and neighbours came through like a ray of sunshine to scatter the dust motes of my anxiety.  Yes, we do appreciate the kindness and have more than an inclination to return it.  That is how kindness works.  There is a continuous lightness of being, a positive feeling that things will work out well.  I am grateful to all the people who turned my darkness to light.

Thank you!

The Meander: In this troubled world where everything seems so dark, selfish, and full of hate it is good to be reminded that there are so many more people who are kind, thoughtful, caring and filled with the milk of human kindness.

Still Here

Life does not end when Alzheimer’s begin.  That was the gist of the #Still Here campaign launched by the Canadian Alzheimer’s Society in 2016.  The truth of that cannot be denied but the necessity to make a campaign about it attests to the fact that Alzheimer’s disease culminates in life’s end.

Bert is definitely still here.  I have empirical evidence.

A few days ago I woke with an excruciating pain radiating from behind my left ear down to my shoulder.  It was perhaps the worst pain I have ever had, and that is coming from someone who has given birth.  It was horrendous.  I could hardly get out of bed and having succeeded could not get back in.   My Bert woke and was immediately concerned that I was in pain.   I got the pain medication Bert got the glass. To take it I had to fill the glass to the brim and sip carefully as Bert held the glass as I could not move my neck in any direction.  No relief.  Bert kept fussing wanting to know what he could do so I sent him back to bed.

As I could not sit, stand or lie down I knew I had to get some help.  As a caution I chewed two baby aspirins and decided to call for an ambulance as it was 2:15 a.m. in the morning.

Bert had fallen asleep.  Of course, he has to go with me.  He cannot be left alone and we would be fast forwarded into World War three if that was even suggested.  I must give thanks for small mercies however, as my Bert can still dress himself.  Instantly awake his first concern was for me.  He did as told then said: “I am ready but I did not shave.”  I told him that was OK and he could shave when we came back.

I got my Emergency Information Vial from the fridge and handed it to the Paramedics.  They were pleased and went through the twenty questions routine while checking all my vitals.  Having ascertained that it was muscular-skeletal in origin and not cardiac related I was placed carefully in the ambulance while Bert sat up front with the driver.  He kept asking them if they were going to make his wife ‘right’.   By now they were aware that my Bert had dementia from the vial information and from me.  I just wanted the ride to be over.  We were travelling on streets I travel almost every day but had never realized how rough they were as every jolt was another stab of pain.

At the hospital we went through the formalities very quickly and my Bert, clutching my purse, was with me every step of the way.  He had just one statement and question to anyone who came to see me:  “My wife is not right.  You can make her right?” As my Bert said this over and over I noticed he was picking his nails, a sure sign of anxiety.

So picture this. Here is a woman whose head is slightly bent forward who cannot move her neck so only the eyes move as each person comes to get information.  Seated beside her, clutching a woman’s purse is a man who keeps telling them to make his wife ‘right’.  If it did not hurt I would have laughed.  This could be a Monty Python skit, I thought. Others in the waiting room looked on curiously but kindly.

A doctor saw me after about an hour and a half, took one look uttered some medical jargon which translated to ‘all the muscles in your neck are in spasm.  It must really hurt but I am going to fix you up right away’.

The doctor left and fifteen minutes later a nurse came in and injected me with Valium, enough for a horse it seemed to me.  I also got two different pills and prescriptions for them and for a liquid rub.

As we left I heard two people talking:

“It’s a good thing she did not have to stay here.  It would take a crowbar to get him to leave her.  They held hands all the time.  That’s love.”

“He looked sorta cute with the purse too. “  I smiled but I was a bit sad too.  My Bert before Alzheimer’s would be just as loving, caring, protective and watchful over me, but he would have been also the proverbial bull in a China shop, ranting and raving and calling on all the powers that be to make his wife better and NOW!

The Meander: We know that emotional attachments go very deep in dementia patients.  Caregivers relish those moments of sudden unexpected lucidity, those moments when old narratives play out and love reigns.  The Bert wanting to make his wife ‘right’ is my Bert.  He is still here.

 

 

 

Conversations

Consider these conversations.   We are driving home from a double day date  with Lifeliner Jackie and her Bob when my Bert says: “Are we going to Canada”?  No use trying to explain, just enter his world and answer: “Yes, we are.”  I have not finished saying those three words when Jackie’s Bob pipes up with: “No, we are not going to Canada we are going across the bridge to Winnipeg.”  His wife and I share shrugs and looks as I distract with: “Lunch was very good today.”  The conversation turns to lunch.  Good.

“Bert, come and watch this.  Our Dutch son has sent us a video.  It is funny.”  We watch together and laugh.

“Where is he?”  Bert asks.

“He is in Amsterdam, in Holland.”

“No, it’s The Netherlands.”  That’s my Bert. He makes this correction as always.  “Tell him to come for a visit, or maybe we can go to see him tomorrow.”   This is an easy one to deflect as by tomorrow, actually within the next five minutes or less he would have forgotten the whole conversation and video, so I say: “That’s a good idea.  Maybe we can do that.”

“Sweet P, are we going to Europe tomorrow?”  Without thinking I answer: “No.”

“Why not?’

Fast thinking: “Because we have two doctors’ appointments and we cannot travel until we get those done.”  The appointments are real.

“Oh, OK.  We can go to England tomorrow then.”

“Yes, we will do that.”   My Bert smiles.  All is right in his world again. Gosh, you lie so easily, I tell myself.

Yes, caregivers lie.  It is a skill we develop over time and it is a critical one for both your loved one and for you.  You get more adept at doing it but every care giver will tell you it is not an easy one to perfect.

Imagine a child lying to a parent.  The same parent who taught that lying was not to be tolerated.  My Bert and I made a pact that we would not lie to each other.  Now I lie almost every day.   There is still a frisson of guilt each time but the alternative is so much worse.  If I were to begin explaining that going to England tomorrow is not feasible it would only result in frustration and anxiety leading to anger and distress.

Caregivers live in two worlds and become adept in Alzheimer’s communication.   At first it is hit or miss as you are being logical and Alzheimer’s world is illogical.  Why argue?  Why be angry?  It does not matter to your loved one.  You only make yourself frustrated and in a minute or two that anger is festering only in you as your loved one has forgotten all.   I find the ‘tear out your hair’ and ‘banging your head against the wall’ moments are beginning to lessen as I advance in Alzheimer’s University.

Of course those moments will continue to occur.   You are trying to communicate with someone who cannot reason. You can no longer begin a sentence with “remember”.  You cannot say:”I just asked you to” or, “I just told you!”  You can say that till the cows come home, means absolutely nothing.

Preparing dinner is wonderful.  Bert loves to help and seeing I am somewhat lacking in the culinary arts he was the cook for most of our marriage.   Now that my Bert is my toddler his kitchen duties are limited.

“What are you doing?  Can I help?”

“No, darling this will not take long.”

“You never let me help anymore.”

“OK.  You can help.  Please put that in the garbage for me.”  I point to the vegetable peelings.  He does it.

“What are you doing? Can I help?”

This goes on enumerable times as I get him to set the table, one utensil at a time, one knife, fork, spoon glass, and one plate while I get on with any preparation I have to do.  Every time my Bert asks to help, I give him one more item.  It is only the two of us but by the time the garbage is in the bin and the table set, whatever is in the oven is ready.  If I need more time I will tell him to go wash his hands.  If I am lucky he will wander around looking for the bathroom, becomes distracted when he sees his chair and sits because he has forgotten what he was going to do.

Alzheimer’s communication is a lot of distraction, deflection and accommodation.   You develop the skill for therapeutic lying.  Here is what makes it bearable and easier as time goes by.  You lie to protect, to preserve dignity, to console, to reassure, to show respect.   You lie because you care.

The Meander: To my fellow caregivers. We learn to live in two worlds. We learn so many coping skills as we travel this journey.  Learning to lie is just another of those skills.  Always remember we lie because we love.

Red Lines

Caregivers make decisions regarding every area of living both for  their loved ones and themselves.  Some are more difficult than others.

Though not inevitable, a decision whether to place your loved one in a Long Term Care facility will arise.  It is better to face the prospect sooner rather than later and learn every aspect of such a move before it becomes necessary.   As I write this, winged dragons are dancing in my stomach.  It is perhaps the most difficult decision a caregiver will ever have to make.

Thank goodness there is no dearth of information, advice, counselling, and help.  They all agree as to when you have to consider this option and the indications you cannot, must not ignore.  The major ones are:

Wandering: Nearly 65% of people with dementia will wander. There have been reports of patients being found a hundred kilometres or more from home.   There may be some elusive memory that triggers the wandering but really there has to be no reason.  That is the nature of dementia.

Falling: Dementia affects mobility especially in the later stages.  This is a particularly worrying one as it involves the safety of your loved one.  Sometimes the situation is aggravated by osteoarthritis, vision problems or other underlying health issues.   Additionally, the carer may not be physically able to care for a loved one who has fallen.  There comes a time when frequency will dictate a move to a more controlled environment.

Aggressive behaviour:  Here the patient becomes a danger to self as well as to the carer, family, friends, and strangers.   This is a crisis situation.  Safety becomes the major consideration.

Sundowning Syndrome:  The darkening day, night time or plain confusion between the two may result in this syndrome which manifests itself in major anxiety attacks and very aggressive behaviour.   This syndrome can put the caregiver in a very deep depression, as well as physical danger.

Escalating health care needs:  There may come a time when the caregiver just cannot tend to their loved one.  Their own health issues, their lack of training, their physical or emotional state becomes so fragile that caring for another becomes just too much.

There is no one to help:  When everything falls to the one carer then burn-out is almost a given.  The disease is such that friends and family may slowly disappear leaving just the one to cope.  Depression is the result.

The caregiver’s own health issues have multiplied, or become worse:   The caregiver now needs a caregiver.  Plain exhaustion will only aggravate the situation to the point where neither carer nor patient  can function.  One or maybe both need care.

Complexity of needs of the person with dementia:  In the later stages of dementia so much may be needed by your loved one such as walking aids, complex medications, help with eating, dressing, toileting, speaking, and equipment to help with basic daily living.  It becomes overwhelming for the caregiver to have their loved one living at home.  The decision must be made to place them in a facility where specialized services and equipment will be available.

Much credit is due the Alzheimer’s Society of Canada for the above.  Nearly every piece of research will echo these reasons for considering  a long term care facility but the Alzheimer’s Society has brochures on every aspect of this gut-wrenching decision and there are many to contemplate.

Despite the clarity of these red lines I believe each caregiver may have  additional ones.  Those would be personal and particular to the relationship they have with their loved one.   I bow to the expert advice; however I have two to add that is specific to my Bert and me:

My Bert does not know me:  This may sound trivial but our life story is such that the day my Bert looks at me and does not know who I am will be the day I know he IS the disease.

Physical abuse:  That is the culmination of aggressive behaviour.   He curses?  So, what?  He is angry?  He has a right to be.  However, the day my Bert lifts his hand to strike me will be a definite red line.  Hitting a woman, any woman is not in my Bert’s DNA.   That would be Alzheimer’s Bert not my Bert.

These two situations would ready me to make this most difficult decision.  My rationale is this:  As a caregiver to my Bert I am the one fighting the disease.  I am the one pushing back with love, care, hope, creating an environment of calm, kindness and comfort.  My Bert cannot fight against something he does not understand and which robs him of himself so I fight for HIM.  This new entity would be an alien, a walking disease.  It would be unbearable.

The Meander:  If I ever have to make that decision, I will do it out of love.  My Bert deserves that.  I will do my utmost to ensure my Bert gets the best care for his daily needs while I continue to care for his beautiful soul.  That is one thing Alzheimer’s cannot take from my Bert.

One has the disease, the other is sick

“One thing you must learn, and learn fast is that you have to look after yourself first.”  The counsellor held my hand and was looking in my eyes as she said this with deep sincerity.

Teary eyed I looked back.  “I know what you mean.  I know if I am not able to look after Bert….”  I did not want to finish.  In a moment of insight I said: “You know, with this disease, one has the disease but it is the other that gets sick.  The problem is that it is the carer who gets sick while the one with dementia becomes more dependent.  They suffer less than the caregiver.”

That is one of the anomalies of Alzheimer’s. These were early days and I wondered how it could be that someone who was slowly losing their faculties could suffer less than the one caring for them.   That cannot be.  It must be so terrible to be losing your memory, the thing that is so vital to our being.  The one thing that gives us continuity that links us to our past, our family, our friends, our community, shared experiences, our roots and is a crucial component in our evolution.  At that time I had not yet discovered Alzheimer’s world nor realized that I had to live in two worlds.  At that time I did not realize how much communication, everyday talk was important to my relationship with my Bert.  We had always been a very connected couple, or as my Bert often said: “Where you see me, you see Paula.”  At that time I did not know that I would ever feel claustrophobic, imprisoned and caged by my Bert’s love and the deep shadowing which is a hallmark of the disease.

Yes, he has the disease but I am the one that is sick.  I am sick of being responsible for everything.   I am sick of seeing my vibrant, voluble, caring Bert struggling for a word and sleeping too much.  I am sick of my social butterfly Bert sitting through dinner in a restaurant without saying a single word.  I am sick of caring for my Bert, my husband, as I would a child.

Caregiver care is not for the basics only; it is care with love, with respect; it is care that must preserve the dignity of our loved one.  It is knowledge based care of one human being that is also the one with whom you have shared a lifetime.

Caregiver care is living for two so dementia puts an extraordinary onus on us, turning our existence into a two for one special.  The conundrum is that it is special.  This awful disease elevates ‘sharing’ to a new level.  It forces you to share the physical, the mental, and the emotional in every possible way that can be imagined.  Still it is not a true sharing.  It is the caregiver who does the sharing for two and so falls prey to illness while caring for another who is slowly dying.  Depression, a compromised immune system, increased susceptibility to common ailments as colds, headaches, and my personal bête noir,  lack of sleep which has its own subset of ailments, are just a few caregiver ailments.

What can you do?  That is the million dollar question. Having a caring counsellor, seeking out  all areas of support, having a Lifeline group, a good diet, getting some exercise, Yoga, Tai Chi, scheduling an activity you love on a daily or weekly basis, Mindfulness and meditation are all good  IF YOU HAVE THE TIME!

The Meander:  I have taken my first prescribed sleeping pill.  I would rather not.  My Mah-jong time is sacrosanct,  I eat well but do not get enough exercise.  I do not know how I would survive without my Lifeliners.  Every now and then my counsellor’s words reverberate but the ‘first’ is bothersome.   My Bert is the priority.  If I am lucky, some days I actually come second.

 

Aphasia…or?

So lately my Bert has been coming up with the most interesting nomenclature for everyday items.  He looks at the shoe he is putting on and calls it cheese.  Trust a Dutchman to come up with that particular mental contradiction.  Then he looks at his cheese and calls it bacon.  At least they are both foods. He is muttering.  I lean in and hear: “St. Anna Boys” being repeated over and over.  There is a ogical link, sort of.  Bert was a hard playing member of SAB – St. Anna’s Boys Soccer club in his youth.  It is close to bedtime.  Will I be a soccer ball tonight?

He says something to me but I cannot understand.  Not only is it garbled but there is no connection, it seems, to the conversation we were having about needing batteries for his hearing aids.  “I didn’t hear what you said.”  That wonderful humour comes through. He laughs and says: “Want my hearing aid?” I laugh with him but I am wondering if he mumbled to tease or were his communication skills diminishing.

There are a few other signs that indicate, as I call it, a few more brains cells have died.  Bert is speaking less; he has difficulty finding words and so makes up new words that stretch my imagination to the limit to decipher.   He does not write anymore and reading is limited to spelling out words, saying them out loud, but I am not sure that he understands their meanings.   Are these the skills of a four year old, his assessed cognitive age?  I am living out my own Curious Case of Benjamin Button.  I was fascinated by that movie.  Never thought I would find any thing remotely relating to any experience I would encounter in my life.

After consulting my sources and resources both human and virtual I have come to the conclusion that my Bert may be exhibiting the early stages of aphasia, specifically Primary Progressive Aphasia.  Do I sound doubtful?  Of course.  Nothing is cut and dried when it comes to dealing with dementia.

The main causes of aphasia are a stroke, a brain injury or a brain tumour.  It is usually the result of an event that is sudden or an emergency.  If that was all then my Bert does not have aphasia.  Then I read that there are six or so types of aphasia and Primary Progressive Aphasia (PPA) is the rare form that is found in persons with dementia.  PPA is a disorder in which people lose their ability to read, write and understand language over time.  It is the only type that, as its name suggests, is progressive, takes time in its development and have nothing to do with a sudden trauma to the brain.  It is more prevalent in persons who have Alzheimer’s disease and Frontotemporal  dementia.

Here is a twist.  PPA may be rare in people who have it without having any form of dementia. However, if you have dementia is this not a natural deterioration to be expected along with all the rest as the brain breaks down over time?   Also, since Bert has age-related macular degeneration could his diminished abilities to read and write be a direct result of that ailment?   However, how would I account for the confusion and his new found ability to create new words, his search for words, his mumbling and the rest?

So here is a topic to be explored with the various experts we see.    I have no wish to fast forward my Bert’s illness but I do believe that forewarned is forearmed.  If I begin to wrap my head around this PPA thing, I can begin to search for ways to alleviate the problem since my Bert’s problem is also my problem.  I will be working on strategies to aid communication.  The Alzheimer’s Society has resources that I can begin to use right now. There are some excellent blogs, newsletters and articles that will help me find best practices.  Best of all the Lifeliners will put our collective heads together to explore possible solutions and find support.   We are a creative bunch.  I can see us using all kinds of homemade tools, flash cards, art, gestures, music and more to communicate with our loved ones.   We will share what works. That is what we do.  We share to show we care.

 

The Meander:  Unlike a stroke victim, when PPA becomes another bump in the road on the Alzheimer’s journey, there is no cure to anticipate.  A legion of therapists will not be able to reverse the affliction.  My Bert or anyone with Alzheimer’s aphasia will only get worse, not better.  Ay, there’s the rub!

 

Be the Calm in Your Storm

A caregiver must take on all the responsibilities both large and small of daily living.  All the shared tasks are now yours alone.   From financial matters to today’s dinner and everything in between all are now on your shoulders.   In addition there is the need to be always mindful of the special needs of your loved one.   Caring for your loved one is job one.  As example just last week my Bert put the kettle on for what would turn out to be the last time.

Both Bert and I are tea drinkers.  In our couple’s language when one asks:  “Would you like a cup of tea”, it actually means, “I would like a cup of tea.  Are you going to join me?”  The answer is invariably: “Yes.”  Putting the kettle on has been one of the little chores Bert loves to perform.  He feels he is ‘helping’ me. So last week the conversation began as per usual with Bert asking the question.

“Would you like a cup of tea?”

“Yes.”

“OK I will put on the water.”  Two minutes later:

“The water is in the kettle.  It is on the stove.  I do not know which dial to turn on.”

It takes an enormous effort to remain calm as I get up and go to the kitchen with my Bert, trying not to hurry or show my panic.  I look at the stove.  The kettle is sitting on a large unlit burner.  Thank goodness.

“Oh, love.  See.  The kettle goes on here.  It’s already plugged in.   Soon the water will boil.”

In my head the conversation goes like this: “Holy crap. If he had turned on the burner under the electric kettle it would melt it and if I was not here he could have burnt the whole place down.”  I am appalled.  I am shaking inside.  I really need that cup of tea now.

Bert: “Oh. I forgot. That is bad. I am a bad boy.”

I smile.   “Yes. You forgot.  That’s nothing to worry about.  You are not a bad boy. You are my honey, and we are going to have tea.”

“You have to make the tea.”

“Sure, I’ll make the tea.”

Internally I am thinking: “You better believe it.  No more tea making duties for you, my love.”  I sigh.

I reach for the cookie tin, put it on the table and say:  “Here are your favourite cookies. Take out some to go with the tea.”   Ah, I think, he can still ‘help’ me as going forward my Bert can get the cookies while I make the tea.

“OK” he says as he puts cookies on a plate

My heart rate is slowly coming down.  Things are back on track.  My Bert will have his tea and cookies and has already forgotten that he wanted to put the electric kettle on the stove to heat the water. I am already formulating my answer for the next time he asks: “Do you want some tea?”   I will answer yes, as usual but will add:  “I will make it for both of us and you can get the cookies.”

I am happy I remained calm.  I was reassuring not censorious.  It could have been so demeaning, chaotic and upsetting to both of us if I had shouted out something like: “Are you crazy?  That is an electric kettle.  You could’ve burnt down the place….”  I would have had a spouse with dementia having an anxiety attack or worse, and for the rest of the day and maybe longer I would have been berating myself for ‘losing it.’

The Meander:  Being careful to reassure, to be calm, to reduce anxiety over any situation great or small is another talent caregivers learn and develop over time.  It is not easy but by acquiring that skill we help not only our loved ones but ourselves as well.   Sure, the situation could have ended very badly, but it didn’t.  We carers learn to look at the bright side…and there is always a bright side.

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 Vow

It is a good morning.  By the time I had finished my shower my Bert had made the bed and was ready and waiting for his bath.  Now breakfast was done and my Bert was sitting, waiting for me to put in his hearing aids.  He looked out the window and said: “It is a beautiful day. The sun is shining. I love this place. It is quiet.”  He smoothed the table cloth and says: “I love this table cover. It is cheerful. This is my favourite shirt. I love my shirt.  You look nice. I love you. You don’t know how much I love you”.  He was smiling. I smiled at the diction of my wonderful toddler/husband and was impelled to write:

The Vow

I will be patient, kind and loving

I will remember “It is the disease”

I will laugh with, talk with, and share with,

I will see an adult who is facing challenges not a recalcitrant child

Even if that‘s the reality.

 

I will not brush off, nor ignore

I will feed and clothe and soothe

I will encourage and praise

I will entertain and join in games

Even when I am tired

 

I will sing a lullaby and blow a kiss

I will mime a story and be silly to jog a memory

I will accept the illogical as the new logic

I will coerce the abnormal to be normal

Even though I reject it

 

I will love and cherish as promised

I will make our home a safe and warm place

I will be wife but accept that I am mother too

I will endure to the end

Of him or me.

 

The Meander:  I see a steady and continuing metamorphosis.  A thief is robbing the faculties.  I note the weakened senses leading to confusion and bewilderment.   I see how much has been diminished, how the familiar terrain is becoming a strange and arid landscape.  I am first row center as this terrible disease plays out its act of destruction.  Yet that appreciation of the simple things and his love epitomizes My Bert.  Yes, the disease may be the victor of the body but not of YOU.

My Bert has been keeping his vow without fail.  I will try to keep mine.