Honest Mistakes

Oh, the stigma of having a mental illness!  Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?”  It was an honest mistake.  Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as  mental illness.  It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned.  Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood.   It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.

Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’.  Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness.   On the other hand dementia is a physical illness.   Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far.  Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around.   I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death.  You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease.  Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.

Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease.  Like Alzheimer Disease these are types of dementia.  In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain.  Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought.  That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease.   It signifies too that the two main engines of our body, the heart and the brain are both compromised.   I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.

My Bert is a classic case of Alzheimer Disease.  The last doctor told him his blood pressure was better than many younger people, to which Bert replied:  “I am only 19.”  I was not going to correct him to say he was a toddler in the brain department!   Yet, it is true that my Bert is healthy.   He eats well, has not put on or lost weight.  Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes.  Messages are confused, delayed, misunderstood or not understood at all.  We are both frustrated.

It is uncharitable to stigmatize anyone for any reason.   We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice.  He was completely cured and felt enormous gratitude for the professional help he received.  He acknowledged the fact of having a mental illness.  He knows the difference between that and dementia.  Many of us do not.  However we can learn.

The Meander:  A doctor making rounds in a Mental Health facility sees a patient writing furiously.   “What are you writing?”  He asks.

“A letter.”

“Oh, who are you writing to?”

“Myself.”

“What does it say?”

“How the heck would I Know?  The postman hasn’t come as yet!”

A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.

“You seem to be writing a letter.” He says.

“Yes.”

“Are you writing to a friend?”

“Yes.”

“What does the letter say?”

“What letter?”

If I can Help…

“Hi.  Love reading your blog.  Thank you for all the great tips. You are sharing your experiences as a caregiver and in doing so you are helping us too.  So much of what you write is just what I am going through.   I learn a lot from you and it makes me realize I am not alone at this very difficult time.”

“Thank you.   Yes, the road is long and difficult.  It can be hard to find anything that brings joy especially on those trying days when nothing seems to go as you would wish.”

A group of caregivers were sharing experiences and tips about what worked for them in a variety of situations as they cared for a loved one.   I was eager to hear of the solutions which were very creative.  Topics ranged from encouraging your loved one to bathe with everyone wondering why most dementia patients seemed to be afraid of water, to that often discussed ‘shadowing’.  We also discussed the missteps that tripped us up every now and then.

My story was in regard to my Bert talking to the photograph of his mother every night.  One night he came from the room and said: “I love you, Mama.”  I laughed and said: “I am not your Mama.  I am your wife.”  It took me an hour or more to calm him and to convince him that I was not rejecting him.  My Bert looked at me with tears and said: “I know you are my wife, but you are my Mama too.  You look after me.”

Apparently, that confusion in relationships was not specific to me.   There were fathers who were jealous of sons who hugged their mothers; A father who decided his daughter was his sister and/ or wife; A husband who thought his wife was his personal support helper and the helper his wife.  Come to think of it that is not too far off the mark.  They were both caring for him.

One spoke about the mistake she made when she decided to have her mother go to the Adult Day Programme for a second day in the week.   Oh, that got a very animated response.  We all had had experiences of introducing a programme to our loved one.  Nothing was wrong with the programme just that you are not there.  Her mistake was to prepare her mother for the new routine by telling her she would be going to her special club now for two days not one.  That she would have an extra day to be with friends, do some fun stuff and have a great time with the other club members.

Sounds good, except her mother only caught on to ‘extra day’.  Mother was livid.  Why was she being ‘sent away’ for an extra day?  Did her daughter not want her around?   Was she such a bother?  The group got a most graphic recounting of the battle which was made worse when on arriving at the programme, mother asked her if this was the ‘extra day’ and was told that it was.

I interrupted the narrative to ask: “Why did you tell her it was an extra day in the first place?”  She laughed and answered: “I had not yet read your ‘Therapeutic Lying’ post nor become adept at it.  It was early in the game for me.”

I understood, totally.   I too, knew nothing about Alzheimer’s disease but I learned with experience.   It took me a while but I found out that sometimes the best way to protect and care for my Bert was by the sin of omission.  When I added a second ‘club’ day, I said nothing about it.  We just went on our usual day and two days later we went to his ‘club’ again.   It helped that Bert was at the stage where days, dates, time were inconsequential.   I did need to reassure him that I would be there to pick him up and we would go home together.  After nearly two years in a Day Programme, I must promise him that I will come for him at 4 p.m. and then we seal that bargain with four little kisses.  When I pick him up his smile could light a small town.

If my experience can help any other caregiver in some small way, I will consider that a special reward.

The Meander:  Our loved ones trust us implicitly. We are their everything, literally.  We agonize and experience stress when we know our behaviour is not quite what it should be.  That is the real world.  The answer for the caregiver is to remember that we have to live for two, act for two, do what is best for two.  All our loved ones want is to feel safe, protected, and loved.

 

 

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.

 

 

 

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.

 

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.

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.

 

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.