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.”

 

 

 

 

 

 

 

 

 

 

 

 

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3 responses to “Whose “reality” matters?

  1. That’s why I want to study psychology and mental science. Our brain is the most mysterious thing on earth.

    Like

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