Monthly Archives: November 2015

Compassion is the beginning.

Sun set on Lake Huron

“Compassion begins at home, and it is not how much we do but how much love we put in that action. Do not think that love has to be extraordinary. What we need is to love without getting tired.” Mother Theresa

Every week my sister drives one and a half hours to visit her meditation teacher who now lives in a long-term care facility. One and a half hours that my sister, Sue, does not begrudge because as Sue remarks to me, she is my meditation teacher, mentor, friend, spiritual guide and second mother.

Whenever Sue visits, she leaves with gifts – words of wisdom, inspirational quotes, encouragement and love.

Sue explains that her friend is coming to terms with the last stage of her life – her failing health and the losses that surround this stage.  But she tells Sue that the loss of independence is the deepest cut because it can lead to the loss of self.

My sister’s meditation teacher has no dementia. Now 86 years young, her body no longer obeys her commands; her aging body has begun to betray her, not her mind.  She needs support in many facets of her life now, including a wheel-chair and bed lift – all physical. Spiritually, she is still intact.

In spite of feeling frustration that her voice is not heard, and her suggestions for improvement within the facility are ignored, Sue’s friend is optimistic that she can facilitate change. Once a city councillor, yoga teacher, and meditation teacher (who trained other yoga teachers and meditation teachers), she is a woman of substance – a woman at the young age of 86 (her words, not mine) who feels that she can still contribute and make a worthy difference to other residents’ lives. So she continues to push her ideas for change. Her suggestions are mostly simple ones, but significant to those who live in the facility. One of the changes she thinks would make a difference is a slight tweaking of the mechanical lift that transfers a patient from a bed to a wheelchair or vice versa (and is used to transfer a resident from chair to bathtub). Apparently when Sue’s friend is transferred from the bed, the position of her body becomes quite uncomfortable and causes some pain. When her friend tells the staff about this problem, she is ignored because there is nothing we can do about it and well, it doesn’t seem to bother anyone else.

Now you and I know that these kinds of answers are patronizing at best and shouldn’t be tolerated. But think about this: You are at the last stage of your life, you own an imperfect body that is not working, and you are totally dependent on the staff for all your basic needs to be met. If the staff do not hear you, what then? Her daughters are now talking to management about the issue, but that is what irks Sue’s friend the most: I should be seen and heard, not my daughters. I live here. Not them. She’s astute enough to recognize that she is experiencing a loss that many of us are not even cognizant of – the loss of not being seen and heard – the loss of self.

Our society and our culture worships at the altar of youth and beauty – we have no time for people who are aging and past their prime (whatever that is). Oh sure, if someone is past retirement and yet still working, owns their own business, is a creative force in the art or literary world (think musicians that are older and still performing to sell-out crowds) – those lucky individuals are still worthy and deemed valuable to society. But once someone goes to a long-term care facility (or a retirement home), the perceptions of value begin to change.

So when Sue asked her friend what would she change in the facility if she had the power to alter her circumstances, her teacher simply replied:  I would only hire staff on the basis of compassion and loving kindness.

Sue asked her if she would make any other changes…perhaps the size of the room, the beds, the daily routine, the food, the activities?

Her friend shook her head. No, Sue. Just loving kindness and compassion. Loving acts and deeds of kindness are transformative because it is in the care and consideration that is shown that makes the true difference. She expanded further: Unless we have compassion, our encounters only fulfill the basic needs; as humans we need more.

The two of them spent their visit imagining a dream home for residents. They laughed aloud at how wonderful the homes would become: daily schedules would cater to the residents (not the efficiency of the system) – staff members would be allowed to spend long periods of time just talking and sitting with their residents, instead of a tight schedule that does not allow for companionship (facilities rely on family and volunteers for that); staff members would sense when a resident needed a good cry, a massage, a hug, or a good cuddle. Oh, the dream! The dream!

When Sue told me this story, I stared at her and said that according to the mission statements of most long-term care facilities (what can I say, Googling is a hobby), they are already resident-centered or resident-focused.  The intent is clear. But what about the delivery?

In long-term care residences, you will find most of the staff members who are caring individuals. In the residence where my mother lived (and where I now volunteer) nearly all of the staff are kind and compassionate. Yes, some personal support workers are not as nice as others; but on the whole, many are loving, beautiful human beings. Unfortunately, the ratio of carers to residents is usually too high and carers or staff are run ragged. That hurry-up energy begins to wear on the carer (I know because I lived it) and breaks down their resolve to be kind. Once frustration or burn-out occurs, a hardening of the heart begins to affect the carer. And we begin (as carers and staff) to only see and feel our own frustrations which blinds us to others.

When we do not understand what someone is experiencing or what they are going through, we do not understand their suffering. If we do not understand a person’s pain, we cannot experience and feel compassion for them. Yes, we can empathize; but compassion can only arise in us when we feel for them or we see them and we are moved to alleviate their suffering. Compassion moves us to want to make a difference.

“True compassion, is more than flinging a coin to a beggar; it comes to see that an edifice which produces beggars needs restructuring.”  Martin Luther King, Jr.

I once walked into a resident’s room and I found the resident and the personal support worker sitting on the bed, the personal support worker’s arms wrapped around the resident. She was rocking her back and forth, whispering words of comfort to her. I was moved to tears and slowly, silently retreated from the room. I stood in the hallway and honoured the moment. I, myself, have experienced those kinds of moments with my own mother when she was upset and I learned valuable lessons when those moments occurred. When my mother was brave enough to show me her vulnerability (she wept in my arms), my heart broke open – and we connected so strongly that it is difficult to even describe it. I can only write…Grace surrounded us and comforted us both.

It is the spark of recognition that we see our self in another human being that connects us, the recognition that we are all One. I think it is this spark (this Divine spark) that moves us to action.

And it is this spark that needs to be in every encounter for our compassion to arise. When a staff member takes a resident to the bathroom, does she hurry and make the resident feel that she doesn’t matter. Does she understand that the resident does not want to need help? When we ask a resident a question, and their dementia does not allow for a quick answer – do we answer for them, instead of pausing? Worse, do we ignore them? Or, when a resident is hurting, and we are on a tight schedule, do we completely miss all her signs of distress? Palliative nurses are trained in recognizing a patient’s signs of discomfort and pain. Is the person grimacing? Is her brow furrowed? Is she behaving differently? Has she lost an ability or skill and is now compensating for that loss? Palliative staff are trained to see! They understand that any change in behaviour may reflect pain. And more importantly, that pain can be seen – it’s reflected on their face.

“It matters not what you look at But what you see.”  Henry David Thoreau

When we begin to really see someone, we begin to notice their suffering. And this awareness allows for an opening or a softening of our hearts.

Compassion enters.

My sister’s meditation teacher is right: Loving kindness and compassion is the answer. At the very least, it’s the beginning.

 

 

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“Love is what we are born with. Fear is what we learn.” Marianne Williamson

Birch trees in the front yard

Love is what we are born with.  Fear is what we learn.

The spiritual journey is the unlearning of fear and prejudices and the acceptance of love back in our hearts. Love is the essential reality and our purpose on earth. To be consciously aware of it, to experience love in ourselves and others, is the meaning of life.

Meaning does not lie in things.

Meaning lies in us.

Marianne Williamson

Too many draft posts?

My draft posts need…hmm, how shall I word this? More work? Prayers and intentions? Germination time? Yes, that’s it. My draft posts need more germinating time. Yes, time is a relative term.

Some of my drafts were inspired during morning walks; others arose during meditation or quiet time.

But many of my posts just popped into my head. Sometimes a family member of a resident who has Alzheimer’s disease will approach me and ask me a question. Other times, when I am visiting at the long-term care residence where my mother resided, a resident will say something that sparks an idea for a post. Often, my encounters with residents are touching and those posts practically write themselves. I know this because I know my encounters with the residents always come from the heart. (It is one of the reasons why I love to volunteer and work with the residents – they are truly honest and authentic, all of the time.)

And there was the time I was at a Tai Chi class when in the middle of wave hands at clouds, an image of my mother laughing as she waved her hands back and forth came to me, and later that day I was inspired to write about her in one of my posts.

Many of these draft posts are sitting in the back of my mind…my greenhouse…planted under the heat lights. And as the posts sit in this draft stage, I just ignore them when I go to the “Add New” section. The posts in the greenhouse need work. So I let them germinate.

I am content to allow myself to sit back and give those posts some time. After all, creativity needs a rich soil, a rich place to sit and grow. Our own creative juices expand when we read more, learn more, and yes, when we do nothing. Our body, mind and spirit needs enrichment so I believe that self-care is a necessary component for our ideas to grow. During this time of rest (or germination), a change in our routines might be in order: change our habits, enjoy a new hobby, take a course, visit friends, volunteer, go to the museum, read a book. When we are open to learning something new, we allow ourselves to stay curious. Curiosity is a big component of creativity. When we are curious about…well, everything in this world, then we learn and gather more information, and it is this information that helps us form new associations in our writing.

Or just do nothing. I am a big proponent of doing nothing. In fact, the art of doing nothing is integral to achieving a true balance in our busy, hectic lives.

The growth of ideas needs a lot of down-time. Whenever I read a book about the process of creativity, the author always espouses the importance of solitude, silence, quiet time, meditation, contemplation…that is, down time. We need to rest our minds and getting away is the perfect antidote. Go for a walk, sit in nature, kayak, jog, dance, turn off the electronics. Learn to go inward. When we focus on an activity that gives us pleasure, it leads to blocking out the world and the mind’s endless chatter. It takes a lot of focus to steer a kayak, or to dance. Everything else falls away.

We allow our right hemisphere of the brain to wake up. This is where our creativity and new ideas spring from, and it is the reason why often we get an inspiration in the middle of a walk along the river. One of my draft posts is all about the colour blue – the many shades of blue – because I am infatuated with water. Every day the water changes and I am obsessed by its changing shades. I read once that Monet was obsessed with water, also. I feel I am in good company.

In the act of doing something that is totally unrelated to our writing, something arises. An idea. The seeds are sprouting.

So my many draft posts sit in my mind’s greenhouse, doing nothing. And I am okay with that.  Because in the act of doing nothing, I am really doing something. I am allowing for the germination time.

 

 

 

Joy and tchotchkes

Joy, gratitude, bliss.

All are interconnected.

We live in a small house and raised twin boys in it. When it was time to move to a bigger house, we looked around our cottage in the city and announced that we were already living in our retirement home – the very same small home that we have called our cottage since our babies were born. So we stayed put.

Like many people I have surrounded myself with things that give me joy. When I walk into any room in our home, I am blissfully happy and content – just by looking at the photographs of trips we’ve taken or art bought from local street vendors, furniture that I have found at auction sales and have refinished or restored, and objects such as vintage vases that I fill weekly with the flowers that my husband buys at the local market every Saturday. (When my son got married, I gave him one piece of advice only: Buy flowers for your wife – often.)

I have learned that when I enter a room filled with items that I cherish, a calmness and tranquility comes over me and soon afterwards I feel a rush of gratitude. That gratitude leads to bliss. I feel a loving energy in every room of our home. My awareness and mindfulness of that loving energy leads to more gratitude – our home becomes a true haven for our family because that energy supports us and comforts us. But it begins with the awareness of where I am.

So when my sister told me about this life-changing book about cleaning that she had just read, I was skeptical.

We were sitting at a table in a favourite restaurant enjoying burgers and beers when she announced that her whole way of cleaning had changed her life and given her back…joy!

I raised an eyebrow. My husband burst out laughing and spilled his beer. My sister was not a clean and clutter-free kind of gal. Nope! I got that gene from my mother, not her.

“The Life-changing Magic of Tidying Up (the Japanese art of decluttering and organizing) by Marie Kondo has helped me not only clean house and declutter, but it has opened my mind and my spirit,” she announced.

Well, even though I was pretty sure that I could not learn anything new about cleaning house, she got me at the “open mind” part of her statement.  But once I had thought that I was pretty sure that I couldn’t learn anything new about cleaning house, then… well, I just contradicted all of my intentions for 2015 about how an open mind can free up our creativity and potential for growth and expansion.

So I borrowed the book and opened it to peruse the chapter titles…

Really I was just fooling myself. I was not being open-minded: I was looking for evidence! Evidence that I already did all this decluttering, organizing stuff; evidence that I already cleaned house in a superior manner; evidence that I did not need this book. (Damn it, my house already gives me joy.)

The chapter entitled Komono: Keep things because you love them – not “just because” caught my eye. Synchronicity, again.

My mom died nearly one year ago and so lately it has occurred to me that I should be sorting through the boxes of tchotchkes from her home. My mom had a lot of tchotchkes around the house because unlike Marie Kondo (the author of said-mentioned book) my mother saved anything and everything that people gave her – books, key chains, greeting cards, postcards, statues from travels, salt and pepper mementos. Like many grandmothers, she had saved useless Christmas gifts that the kids had given her when they were preschool age…some school projects were now torn or dried out;  while some items were just plain hideous. (Did I help my kids buy these items? Was I high that shopping trip?) Her dressers were filled with unopened boxes of gloves, scarves, and woolen hats that she had never worn, but kept in their original packaging. And boxes…that were empty. She saved those, too. For some reason, I was now the keeper of this stuff.

Well, I am not a knickknacky type of collector. In fact, up until a couple of years ago when I deliberately made the intention that I would not judge people by the crap that they collected (Ha! A lot of judgment in that statement, huh? My meditation teacher would not be happy with my lack of growth.), I could not walk by a front garden full of gnomes and plastic flowers without cringing. Now with all my growth (ha!) I can walk by such gardens and just smile. Whatever floats your boat, right?

Well, it is time to release my mother’s tchotchkes, according to the KonMari technique (author’s name spelled backwards) and this particular chapter on mementos will tell me how to do it, joyfully (apparently).

Take everything out of the boxes and place them on the floor. Now, one at a time, pick up the items and hold them, and only if they give you joy or pleasure, return them into the box to be kept. The rest, my friends, will go to the charity shop or the trash. Well, that’s the difficult part. Who wants to give a shiny, three-inch plastic flower-pot that wiggles when you pick it up to the trash can? Did my mother like this flower-pot? Did she pick it up and laugh? Or, did someone dear to her give it to her? (My sister denies it was her.) Nevertheless, this pink plastic flower-pot is in perfect condition. Plastic just doesn’t die!

In the spirit of the KonMari technique, and because my sister nags me every day, I am going to give it a try. I am going to release the flower-pot that wiggles!

Thanks to the author, I realize now that my mother’s possessions did not give me joy – I was only storing them out of guilt. I feel such freedom. Plus, my closets are now spacious.

Decluttering or simplifying our home, according to the author, is the first step to simplifying our life. When we clear away stuff, we free ourselves. Apparently her technique works as once she teaches clients how to organize their homes, her clients continue to practice her techniques – they live clutter-free forever. More significantly, they learn to release old habits and old thoughts, as well as letting go of stuff.

To me, that sounds pretty spiritual. Letting go of things that no longer work for me; letting go of ideas and thoughts that do not serve me or support me; simplifying life so that I can pay attention to what does serve me – my family, my friends, my home, my garden, my volunteer work. A simplified life frees me to spend more time doing things that give me joy, activities that increase my creativity, that expand my awareness and support my growth.

When I catch a glimpse of the red cardinal in our cobalt blue bird bath, I feel joy.  When I have more time to just sit with a hot tea in my hands, watching the autumn leaves fall from the maple tree at the corner of our yard, I am grateful for the simplicity of my daily life. My life is simple because I have chosen this life. I choose to be mindful of what gives me joy. And letting go of chaos and clutter are life-changing choices, also.

As young people we don’t understand why our parents give away their possessions, or why our parents refuse birthday gifts or return them later. As young people we spend a lot of time collecting stuff, not refusing it or giving it away. But as we grow older, as we grow in self-awareness, it becomes unnecessary to keep collecting, to keep buying…and for those who are ill or dying, they learn very quickly that it is not stuff they want, it is precious time that they crave now: Time to spend with loved ones, time to spend doing whatever inspires joy, and time to reflect on a life well-lived.

Often I repeat something that I learned many years ago…something that I heard again when I took a palliative course two years ago: When we are dying, we never cry out that we wished we had spent more time at work or more time making money to buy more things. Because when we are dying, we are just grateful for the love that surrounds us. In the end, love is the only thing that matters.

On my window sill over the kitchen sink I have a few beloved tokens: three Buddhas with their hands stretched out in loving kindness and generosity, my mother’s ring (which I wear with love always), my gratitude stone, and a tiny porcelain teapot, pink roses on the front, and inside the teapot are two tiny mice, each holding a cup of tea. The tiny, difficult-to-read inscription says,  Mother and Daughter.

This tchotchke gives me joy. All of the other stuff, I let go.

P1060369

Whose “reality” matters?

My mom was convinced that the new resident was an actor from her favourite television show Coronation Street, a popular British soap that many Canadians watch faithfully.

Even though the new resident didn’t have any similarities to the actor, she was insistent, “It’s him. He lives down my street.” Down the street was her term for the hallway.

Misunderstandings, misinterpretations, hallucinations, delusions and altered perceptions are all symptoms of Alzheimer’s disease and of other dementia-related diseases. Unfortunately, altered perception is also one of the most misunderstood symptoms that families of a person with a dementia-related disease struggle with when their loved one is ill.

My own family floundered with our mother’s perceptions and hallucinations nearly every day. I learned that we were not alone: Many persons with Alzheimer’s suffer greatly from this symptom of brain disease.

In fact, since I have been volunteering at the long-term residence where my mother lived (she died last December), I have discovered that many of the residents are affected by both delusions and altered perceptions – even those who do not seem to have any other symptoms of dementia.

I have learned that a seemingly lucid person can suddenly demand to be taken back to her room because her daughter has arrived for a visit…when I look around, there is no daughter. In fact, sometimes, I turn around in a complete circle…There is no one here! Just me.

Other times I have been in the middle of a conversation with a resident and suddenly that person will look up and insist that “the children have arrived.” You guessed it: There are no children.

My friend’s mother often had an animal friend that slept in her room. She would ask my friend to pat the animal, speak to the animal, and, of course, feed the animal – which my friend lovingly obliged her. So she fed it, patted it, and spoke to it often; imaginary food, of course.

When we go along with the hallucinations and altered perceptions, we are not harming our loved one’s reality. Their altered perception is their reality. When we argue or attempt to correct our loved one, we cause further harm and suffering. Worse, we hurt their pride – their sense of self-worth.  (We need to understand that people with Alzheimer’s still understand disrespect and intolerance from someone…they just do not process that negative energy the same way as someone with a non-damaged brain.)

So how should we respond when our loved one tells us that the boys are in the trees? (That was a common refrain of my mother’s. “What kind of parent allows their children to climb those tall trees?”)

First, I think it is important to understand why our loved one is seeing things! Compassion comes from our understanding another person’s viewpoint. And it is in compassion that we can lovingly adapt to or manage our loved one’s symptoms.

Hallucinations are not necessarily hallucinations; in fact, our loved one might be experiencing visuoperceptual difficulties. Many people who have a dementia-related disease have damage to the visual system; therefore, they have visual problems. Visual mistakes are often made since the patient’s disease (the deterioration of brain cells) prevents them from seeing an item and then interpreting it correctly (and many times they do not name it correctly because of their language deficiencies).  Hallucinations do occur, of course.

As caregivers, we can begin to discern or differentiate between misperceptions and visual mistakes that our loved one makes and hallucinations.

For instance, when my mother was alive she made many remarks that were quite outrageous, but when my family learned that her visual system could be damaged because of her loss of brain cells, we took a closer look at what she said: “The boys are in the trees and they have been there all day.”  On closer inspection, the wind was whipping the tree tops and the leaves were moving frantically back and forth. This movement caught my mother’s eye and she mis-perceived the tree and its leaves.  Because of the brain damage from the disease, she no longer could judge or interpret events; hence, she saw boys in the trees. Even though most people who do not have damaged brains would realize that the suggestion was ridiculous, my mother could not make that distinction.

A common mistake our loved ones with dementia make, time and time again, is that they see people in a chair by the bed.  If a house coat or sweater was draped over the chair, or even a comforter or a blanket, that outline of fabric would fool my mother and she would see people. This is a very common mis-interpretation that people with dementia-related diseases make.

Misperceptions and altered reality are two of the many causes that allow for accidents and falls. My mother was constantly underestimating the exact location of the table – she would either place a cup of tea on the table and misjudge the distance;  hence, a spill.  Or, she would sit down onto the toilet and miss it entirely; she would try to climb steps and her foot would hover in the air as she probably could not see the steps clearly. She would trip over the doorway threshold.

There were times when I took my mother into the bathroom and she would catch a glimpse of herself in the mirror and she would stop and refuse to go into the room: “There is another woman using the bathroom, Mal. Who is she?” ( I would reply in a quiet voice, “Mom, perhaps it is you!”) She would pause and then burst out laughing. Notice that I allowed for her to make the adjustment – my way of allowing her some dignity.

These encounters occurred throughout the whole day with my mother. She would absolutely refuse to go into the hallway from her room because she was convinced my Dad was in the hallway with his floozies. My dad had died two years earlier, and no, he did not have floozies (to my knowledge. Ha!). To make a distinction, this was a hallucination, not a misinterpretation. (She was not mis-perceiving people as there were no people or objects to mis-identify in the hallway.)

But along with hallucinations and misconceptions and altered perceptions, there are times when our loved ones insist that someone has stolen something or a personal care worker is now a “thief.” The many times my mother said my father visited her room to raid her closets would be considered a delusion – most delusions focus on infidelity, paranoia of someone, theft, or abandonment.  Unfortunately, delusions are also another common symptom of dementia-related diseases – and since they usually “finger-point” to a family member or a staff member, they can cause hurt and bitterness. With understanding the causes of these symptoms, we can let go of the story and not take them personally.

Then there are the times when residents insist animals are sitting beside them or friends have visited when you know for a fact, no one visited them that particular time.

But since time and space are confused, a meeting that takes place on Monday can be remembered as taking place on Saturday. And, when someone does visit, our loved one insists that they did not!

It’s all very confusing, yes? Yes! And frustrating. Until you accept the symptoms of the disease and just go with the flow. I make it sound so easy and yet I know that it is not. It is a constant challenge to live in the Now, and accept our loved one’s disease. But it is what it is.

We cannot change our loved ones. Only we can change!

As Gandhi said, Be the change that you want to see.

Hallucinations occur more often in people with Lewy Body Disease or Parkinson’s, but clearly Alzheimer’s does present these symptoms.

Here are a few tips that I learned when I cared for my father and my mother:

  • avoid talking or laughing or whispering while near the person with Alzheimer’s – if that does occur, then ensure that you clearly explain to your loved one on the exact nature of the discussion (otherwise, your parent misinterprets or mis-assumes/deludes herself, imagines/perceives a story or complete fabrication)
  • no loud, violent TV (again, our loved one thinks the television story is real)
  • don’t argue in front of the person with Alzheimer’s (this frightens them and they stay frightened long after; some people become quite traumatized)
  • help them look for missing or stolen items – just go with the flow (never insist that they are wrong or imagining that an item is stolen)
  • try to have duplicates of the lost items (for example, an extra wallet, loose coins, another set of keys) when they “lose” something, now you can “find” it
  • do not argue with your loved one over the reality of a situation – in their mind, this is real for them
  • increase the lighting in their rooms (they cannot see well)
  • de-clutter the room (if they live in their own home, de-clutter the entire home)
  • hang clothing in the closets – draped items cause visual problems for them; a coat rack can become “a person”)
  • ditto, pillows and cushions – they are mis-identified often
  • watch the person’s movements and adapt to them – often my mother would stretch out her arm and I recognized that she was going to just drop the cup  (into space). I began to anticipate her moves and I would take the cup from her, or move a table closer to her.
  • say aloud what the item or object is when you hand it to them
  • in the case of mis-identification, learn to identify her visitors  (E.g. “Oh, Mom, here’s Margaret, your best friend. She has come for a visit.”)
  • anticipate that they need support or help when they climb stairs
  • be aware that shiny floors or patterned carpets can completely “dazzle” their eyes or confuse them (take their arm and gently say, “Allow me to help you up the stairs. There is a step in front of you. You will need to lift your right foot.” Or, you might remind them that the floor has transitioned to carpet.)
  • learn to go with the flow and agree gently with them on most occasions (do not argue, cajole, or try to persuade them that they are wrong – you will never win the argument)
  • if they become agitated, stay calm and lean into them – rub their arm or hug them; tell them “This must be difficult for you. I am here for you.”
  • recognize your emotions when your loved one has an altered perception; recognize and accept the emotion – do not suppress it or deny it; learn to accept your emotions as a natural and human reaction to our loved one’s stories (in time, you will let go of the hurt)
  • try to maintain a sense of humour

To recap, objects are visually seen but the impaired brain cells (and damage to the visual system) misinterpret what the objects are. What many of us, as caregivers, have labelled as hallucinations are not; they are visuoperceptual difficulties.

Similarly, the person with a dementia-related disease will misunderstand or misinterpret conversations, even conversations that they overhear. Many a visit with my mother included bizarre re-telling of stories – some had an element of truth in them somewhere, but mostly her stories were based on erroneous facts and misunderstandings.

One time my mother told me that her sergeant insisted that she move to another home.  Nothing we said could allay her fears. Weeks later I learned that the new director of the home had introduced herself to many of the residents. My mother’s impaired judgment led her to believe that the director was the sergeant and that some of the goals stated were misinterpreted to mean changes. Because my mother could not discern fact from fiction she insisted that the sergeant was moving her to another location.

So one can now understand that persons with Alzheimer’s and other dementia-related diseases do not see and interpret things the same way that we do…their brains take in and mis-interpret visual information causing them to misjudge distances, dimensions, depths, colours, items, events, and circumstances.

Once we become aware of this new information, caregivers and family members (and visitors and volunteers) can let go of their fears. Remind yourself: it’s the disease, not them. And learn to go with the flow. Try not to take things (wild stories about your father) personally.

It is completely natural and human for family members (and caregivers) to be fearful of these kinds of symptoms – it is natural that we are shocked when we first hear such accusations and wild stories. We feel sadness and grief. These wild stories or hallucinations trouble us deeply – we are both bewildered and saddened, but we are also totally overwhelmed in how to cope with them.

When they first occur, we reason with our loved ones:  “Now mother, you could not have seen a donkey in the yard…here, let’s go outside and I’ll prove it.” (Yes, early in my journey, I actually tried to reason with her, over a donkey.)

Then, we argue and debate: “Okay, let’s call the neighbours and find out if they saw the donkey.” (Yes, I argued and debated the odds of actually seeing a donkey in the backyard. I lost. My mother reasoned “many farmers have donkeys in their back yard. Who’s to say one of them wandered onto my property.” When I explained that there were no farmers on our residential street, she calmly answered, “Well, you don’t know everything.” Just for the record, there is no retort to that remark.)

Then, we cajole (and blackmail): “Now, look. If you continue to see donkeys, we will have to call the doctor. And you know that you don’t want me to call him, right?” (Thankfully, I did not resort to blackmail, but I have heard many family members say such things to their parents when I visit the long-term care residence.)

When we have more information about these kinds of symptoms, we all learn to accept their actions, and we begin to have more compassion, kindness and understanding for the person who has a dementia.

Besides, what’s the harm in seeing a donkey.

The next time our loved one insists they saw …a donkey, a dog with rabbit ears, a horse in the bedroom, boys in the trees…let’s respond with love and understanding…

“I’m so glad that you have a new pet. I bet he keeps you company when you are feeling lonely. What did you name him?” or just say, “Any animal would be lucky to have you.”