Ruminations on a Year-2018

We look at the world; the world looks back at us.   Some call me brave.  Brave?  Far from it but I do accept responsibility.  They call us a loving couple and that we are.

“Oh, Bert looks so well, you would hardly know he has Alzheimer disease”.  If only they knew.  I choose to accept the compliment on behalf of both of us, after all carers get so little thanks, if any.

“How can you write so positively about your situation?”  I choose to do so.  No, I do not have a Pollyanna complex.  Rose coloured glasses obscure too much.   I have to see clearly not just for me but also for my Bert.  I hurt.    Of course I do.  However, I am grateful that I do see the glass half full and have been blessed by an offbeat sense of humour and with a partner who makes me laugh.

“You are a Saint.”  Hah!  Leave that sobriquet to Mother Teresa.  There are times when I must be more akin to the devil incarnate.  Have I experienced bitterness?  Yes, but as Norman Vincent Peale said: ”Change your thoughts and you change your world.”   Sure I will have negative thoughts; they come with the territory, but I hope they are not bitter.

In 2018, the learning curve reached a peak.  We sit on a plateau not knowing when the change will come.  Will it be again upward or will it be a downward helter-skelter tumbling into the abyss?   More than likely it will be a combination of upward learning as we tumble ever downward.  I choose to let the future be, holding on to the present and refusing to be weighed down by the past.  2018 taught us we can live, differently yes, but live nonetheless.  This is neither bravery nor sainthood, just accepting the things we cannot change.

In 2018 I learnt banging my head against the wall only results in a headache. Therefore I count to ten or maybe twenty or maybe…  I must be long past a million by now.

In 2018 I learnt that I am actually quite pragmatic as I know I have to acknowledge the darkness.  I have to grant how awful, how evil, how depressing this disease is.  Yet I must also look for the infinitesimal spark of light within that darkness.

2018 taught us to live by smalls, like small mercies, small moments, small comforts, and small miracles.  We learnt to wonder at the beauty of one song within the symphony, one iridescent droplet after the rain, one star within the constellation.  In a shrinking world our universe expanded.

In 2018 I would sometimes awaken with tears streaming and fall into a chicken and egg reverie.  Are these tears of joy for a rare good night’s sleep or is the sadness deep in my soul finding release?  I try to unravel the conundrum while in my suspended animation shifting between waking and sleeping I endeavour to decipher the meaning of the tears.

The yin and yang are played out in every way thinkable every day.  It seems that happiness and sadness are always holding hands, walking in tandem and interlaced with uncertainty.  What’s next is an ever present question and the answer is always we do not know.

The Meander:  As a new year dawns I promise myself that when I see myself sliding into the slough of despair I will ponder the imponderables:  How can there be darkness if we do not know light; how can we know good if there is no evil.  I can be joyful because I am intimate with sadness.

Short Shorts

My Bert calls me Mama.

“I am not your mother. I am your wife”

“I know.” he says.

“So, why do you call me Mama?”

“You are my Mama because you take care of me.”   This is no longer a momentary lapse; it is a delusion.   My name alternates between ‘my Paula, my wife and Mama.’   I presume that since I go from Alzheimer’s world to the real world perhaps my Bert goes from reality to delusion and back again in much the same way.  I do not know.  I doubt the transition from Mama to wife means anything to my Bert.  I do know that to him I am Mama in that juncture of time.  When he calls me my wife or my Paula it is the truth, the reality of that moment.

The only significance in those moments is that whatever he calls me he knows who I am.  He has not forgotten me and in fact has more cognition, where our relationship is concerned, in his world in that I am not one or the other but a composite of the roles I fulfill.  He does recognize that I am wife and mother and also just Paula.   What do I do?    Nothing.

***

We are on our way home.   My Bert has spent the day at his ‘club’.  He was happy, telling me that ‘They all like me and they tease me’.  Teasing will always get a positive response from Bert as he has a PhD in teasing.   A soft white splatter, then some more hit the windshield.  Omigosh.  I am not ready for winter.

“Look, it is snowing.  It is too early for snow.”  I sigh.

My Bert leans forward and says: “Don’t worry, it’s only hard water.”   His perspicacity generates a chuckle.   I wonder if I should pass on this definition to a meteorological agency as another descriptive word for snow.   It does sound logical doesn’t it?   Think of ice.  That is definitely hard water.

* * *

My Bert lost his hearing aids.  If I have told him once I have told him a hundred times to leave his hearing aids in until I remove them.  Well, that goes in one ear and out the other, hearing aids in place or not.  I look in all the locations that would seem logical for him to put them.  Then I look in some unusual places.  I enter Alzheimer’s World and begin to look in the most implausible places imaginable.  No hearing aid.  I remember the bread knife in the washing machine and begin the search again.

Although I know the hearing aids had to be somewhere in the home I cannot find them.  I give up, realizing Alzheimer’s world has defeated me.  I call, order a new set and make the appointment to have them fitted in three weeks.

The loss of the hearing aids becomes a subject of conversation.  This happens more frequently than you may think.  I heard of them being in shoes, in a flower pot and other such interesting but bizarre places.   It makes for a good laugh but I am thinking of the replacement cost and wondering how to ensure I do not have to do a repeat.  Three days before the appointment I open the freezer, root around to find what I need and right in the corner there is a pair of twisted together, flesh-coloured objects  winking at me.  You guessed it.  The hearing aids.   Of course they are no good anymore.  My Bert has frozen his ears off…well the hearing aids.

* * *

A new Personal Support Worker (PSW) is coming to get my Bert ready for the day.  It is not the usual male aide but a woman.  I am unsure how my Bert will respond to this.  She arrives.  We all go to the bathroom.  I will hang around just in case.  I call out cheerfully:

“OK, Love, time for your bath.”  My Bert looks at me balefully and I am mentally preparing what to say if he balks.  He harrumphs as only he can, begins to undress and says: ” Why do I need two people to give me a bath?”  The PSW is marvellous she laughs and says:

“You are so lucky; you have two beautiful women to help you.”   Without batting an eye and with a devilish grin my Bert turns around and says: “Want to change places?”

We all burst into laughter.  I leave them to it.

The Meander:  As long as I can laugh with my Bert at the vagaries of this dreadful disease, we remain its masters.  I had no idea that Alzheimer disease could provide so many instances of comic relief.   I hope we have many more moments of merriment at its expense.

Employment Opportunity

The Company:  Dementia and Partners

Job Title:             Caregiver to a loved one with dementia

Duties:                 Advocacy or dealing with agencies, organizations and bureaucracy

Nurse and Social worker

Mother, Father, teacher, daughter, son, husband, wife, friend, protector, security blanket, lover, dance partner, punching bag (literally and figuratively), pacifier

Drug Dealer doling out correct medications at right times and right amounts

Administrative Assistant

Primary Personal Care aide

Archivist or keeper of memories

Mood assessor, Ego booster

Entertainment Manager and Cultural attaché

Detective and finder of lost articles

Domestic cleaner

Fashion advisor and dresser – no clown outfits or black left shoe with brown right shoe allowed.  “You need a coat and scarf.  It is cold outside.”

Language expert, Translator, Interpreter

Dietitian – Chief Cook and bottle washer

Information Research Scientist to wade through the massive amount of information.  It is continuous learning.

Child care worker, Psychologist

Financial manager and banker

Transportation service provider and personal taxi service

Ghost buster when as example you are told: “There is a man outside the bedroom with his wife and children.  Are they sleeping with us tonight?”

Playmate

Logistics clerk – you will be making appointments with many professionals you never knew existed.

Record keeper-Careful notes result in better care.   You work with your care providers and medical professionals so there is no guess work.

And other duties as they arise

Special Skills needed:  Flexibility, Quick learner, Decision Maker, Comedian, Political skills aka therapeutic lying/ deflection/distraction/redirection.

Patience, patience and more patience

A thick hide is a real bonus

Emergency services coordination in knowing when and whom to call on a list you have created that is easily accessible when needed

Wages:                 $0.

Benefits:             The complete and total trust of your loved one

Recognizing the awesome responsibility of having complete control over another human being, your loved one

Unconditional love, which is sometimes hidden but is always there

Acquiring enumerable new skills, whether you want to or not

No experience necessary.  You will be given full, free tuition and fast track your career through Dementia and Alzheimer Disease University.

We guarantee a full and rewarding life though we cannot guarantee your sanity

Date of Hire:      Immediately

Hours of WorkThe 36 hour day – This book is a good resource as well as your daily work hours

Contract duration:  6 to 20 years or more.  Think “Until death us do part.”

This is an equal opportunity employer – age, status, wealth, race, colour, creed, education, health status, relationship, sex, ethnicity, the good, the bad, the ugly, the beautiful or other does not matter. This company will take on anyone.

The Meander:  So often this phrase is uttered “I did not sign up for this”.    We do not choose this job.  It is thrust upon us.  On my dark days I console myself with this: “Love guides me; Empathy empowers me; Patience is my best tool.”   It is my mantra.   My Bert, love, empathy and patience keep me going.

Note – As I was about to publish this post a call came in from a friend.  I mentioned the content of this post and her immediate response was: “You left out one very important duty- Search and Rescue.”  True.  Not wanting to change the original post I decided to add this note.  I also invite all who read it to comment and add any other duties I may have missed.   It may be that no one person can cover all the changes and activities that will come out of a brain with dementia.   Individuals exhibit different behaviours  even though they all have dementia.  Writing the ones we each encounter may help many of us already on this journey and others who may find themselves walking it in the future.  Forewarned is forearmed.

 

 

Blips and Dying Cells

If you are a caregiver to someone with dementia you are a keen observer.   Or you become one.   Before diagnosis you may have been that person who would not notice the nose on your own face or anyone else’s for that matter.   Dementia brings out the sleuth in you though as you become the keenest observer of your loved one. You have to be.

My Bert has Alzheimer’s disease and the best way to monitor changes and give care is to observe.   It is the caregiver who must see the changes, decipher the small ticks, make sense of the seemingly minor blips that occur when least expected.  You can only discover them by constant observation and comparing over time and remembering what was as opposed to what is.

Here is a tip.  Keep a journal of observances and take it with you whenever you go to see your medical professionals – family physician, geriatric psychologist, mental health counsellor, memory clinic, case managers.  Record every change and new behaviour. The importance in recording is that it will act as a sign post to what comes next.   Alert Day Programme staff for your need to know how your loved one spent his day and any new behaviour noticed.   The more you record and document the decline and note the specific changes of your loved one, the better able you will be to work with your health team to enable them to provide the best care to both of you.

I give my Bert some towels and ask him to take them to the laundry room.  He takes them, looks at them, turns to go then appears puzzled.  He holds the towels, walks to every door and around the dining table, comes back to the kitchen, sees the door across from it,  opens it and puts the towels in the laundry room.  This was a first.  I record it.  Is this a blip or did a few more cells die?  Two days later this is repeated.   Then he tells me he is going to the bathroom and he wanders around before finding it.  Now I know a few more cells have died.  My Bert is getting lost in our apartment.

Blips are easy to deal with as they are usually a onetime occurrence.  Usually you can decipher what caused it.  As example, my Bert saw a snake in his shoe just once.  Thank goodness.  A snake appeared in a show he watched before going to bed.   You can ignore those oddities for what they are, blips.  Cause and effect are clear.  On the other hand, dying cells manifests themselves in inexplicable behaviours that indicate deterioration and clear progression of the disease.  You can tell when brain cells die as the new behaviour becomes his norm, or when previous everyday knowledge is lost.

As is always the case nothing is as simple as it appears.  Can blips recur and still be a blip?  Yes.  For the last six months my Bert has been going on a trip.  First, on our way home from his ‘club’ he asked me if the suitcases were packed.  Then two weeks later he woke me up as he was  looking for the passports.  A month later, in the middle of the night he saw some friends outside the bedroom who were travelling with us.  Next there were two people sleeping with us in bed which he called ‘the deck’.   Just last month he wanted to know if I had gone to the bank for the travel money.  These are not blips to me.

Travel has always been important to Bert and me.   Now, as soon as we meet anyone, old friend or new the first thing he tells them is that we have travelled all over the world.   Ask him a question of which he is not sure and he will tell you: ”My wife and I have travelled all over the world.”  The question might be: “What time is it, or, where do you live?”  Answer: “My wife and I have travelled all over the world.”  Blips and dying cells are my most non-professional designation for changes and oddities of living with a person with dementia.  This obsession with travel is neither of those.  I call this hard wired memory recall.  I know my Bert well enough to realize travel is such an integral part of his life that this will be one memory that endures.  In this case there is no blip nor have any cells died.  Rather the cells are being kept vital by the hard wired, happy memories of travelling the world.

The Meander:  The only thing predictable about dementia is its unpredictability.  I hope any recurring hard wired memory is one that brings happiness, encourages communication, and enhances social interaction.   I will pack suitcases, get passports, buy foreign exchange, and travel with invisible friends every day if my Bert wants me to do so.  After all by next day, or next week I may have to start all over again.   Not a problem as long as my Bert is happy.

 

 

 

 

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!

 

Adult Day Programmes

It was my local chapter of the Alzheimer’s Society Canada that first introduced me to day programmes.  The brochure was just another among the many I received.  No need to digest it yet.  The Adult Day Programme was for ‘later’ when my Bert was much further along in Alzheimer’s world.  It never occurred to me that I might need it as much as he did.

Carers are like that.  We rarely remember to think of ourselves.  Day Programmes were for the loved ones and for ‘down the road’.  Let’s leave that until they really need it.  At least, I thought so until the day I actually decided to count how many times in one hour I had the following conversation:

“Do you know what? Guess what?”   I smile because I know what is coming but I have to answer: “What?” A laugh and: “I love you.”  I answer: “I love you too.”

That conversation occurred fifteen times in one hour.  I was tired, fed up and the next time the question came, in frustration, I replied: “Ask me that one more time and my answer will be that I hate you!” I was shocked.    In consternation I called my counsellor and blurted:  “Have you heard of anyone being upset at being told that they are loved?”

I felt so very guilty. Even the caregiver’s mantra: “It is not my loved one, it is the disease,” did not work.  This was my Bert really telling me that he loved me.  It was the disease that resulted in the incessant repetition. He really did not remember that he had asked me the question five minutes before.  Coupled with this was the intense ‘shadowing’. I felt claustrophobic. HELP!

Yes, I needed some respite. So I went through the detailed process and registered at the local Day Programme.  The wait list was nine to 18 months!  Could I survive?  I did, and it was worth the wait. Yet, when my sanity saving call came I panicked.  What will Bert do without me for six or seven hours in a day?

This is my paean to the providers and staff of adult day programmes everywhere.  My greatest appreciation is that day programmes are for both patient and caregiver. Two days per week from 9 a.m. to 4 p.m.  my Bert is in a non-judgemental environment of acceptance where he is both mentally and physically stimulated.  He is socially engaged in programmes designed specifically for adults with dementia.

Bert is with professional staff and volunteers of the highest calibre who care with love. He receives a hot, well balanced lunch and snacks.  The staff will tailor the activities to suit the capabilities of the group and at times to the individual.  Music, art, Tai chi, games, crafts and relaxation time, one on one conversation and hugs are all on the agenda. It is a cheerful atmosphere, each one called by name and greeted with genuine warmth.

For the caregiver, in addition to the benefits for your loved ones are the benefits for YOU. As a caregiver I can get to medical appointments, do chores, go to the hairdressers, shop, have a coffee with friends, play Mah jong, read, keep in touch with friends via telephone or email and go the bathroom without worry and without my shadow. I can breathe.  What a luxury to have a little time for self.

Was it easy?  Not at all.  Dementia and separation anxiety go hand in hand. There were many mornings I sat in my car and wept.  “Why are you leaving me here?  Are you coming to pick me up? What time? I want to be with you, I miss you. Why can’t I stay home?”

Now I do not have to fight world war three to get my Bert ready for his ‘club’.  On delivery he gets four kisses that say he will see me at 4 o’clock.  The greeting staff member may count along. Some days he is laughing when I pick him up.  Some days the anxiety is there.  He loves his club but he loves me more.  He is so happy when he sees me.  Thanks to the day programme I am happy to see him too.

The Meander:  Many times you will get the question: “How do you do it?”  Best answer: “With a lot of help”.  Getting your loved one into an Adult Day Programme is among the best help you can get.  A good adult day programme is an environment of acceptance providing care and support for both patient and carers.  For a little while you can get away from living in Alzheimer’s world.

“You know what?” “Guess what?”  Yes, still it comes, but I no longer count!