There is nothing wrong with me...

“I don’t wear glasses,” Mom said emphatically. The chatter around the Thanksgiving table came to a screeching halt as my nephew said, “But, Grandmother, they are sitting on your nose right now.”  We had been talking about our various needs for glasses, reading glasses, bifocals and trifocals when Grandmother made this announcement. There was such seriousness in Mom’s face as she declared that she does not wear glasses, that none of us laughed at the absurdity of her claim.  My sister and I just looked at each other and guided the discussion in another direction.

I am not quite sure if her insistence that she did not wear glasses was denial – choosing to ignore something rather than face it – or if this was one of many examples of anosognosia – a complete unawareness of a deficiency.  What many of us refer to as denial is actually the little known dementia symptom anosognosia – a term I have yet to learn to pronounce.

It was clear that Mom was in denial upon hearing the diagnosis of Alzheimer's, telling everyone that there was nothing wrong with her memory.  “The doctor said it was my family that is the problem.”  That behavior fit very neatly into the definition of full blown avoidance of a diagnosis that would forever change her life.  She was afraid.  So were we.  None of us really knew the full impact of Alzheimer’s at that point.   

Hearing Mom repeatedly insist that there was nothing wrong with her ability to balance a checkbook, read and follow the instructions on a box of Jell-O, or remember to bathe regularly… well, those were examples of anosognosia.  In the later stages of Alzheimer’s, Mom seemed to be so unaware of self – both mentally and physically – that she did not recognize the need to shower, brush her hair, or change her clothes.  She was blissfully contented in a world where these things just did not occur to her as necessary, and she struggled to just be left alone to sit in her chair every day, unmoving and unresponsive as the rest of the world went on by.

At first we desperately tried to help her understand and accept her own cognitive deficits.  It was like hitting a brick wall, and in retrospect, it really didn’t matter if it was a case of denial or a case of anosognosia.  We weren’t getting anywhere in convincing Mom that she needed help.

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If you are reading this posting, you may very well feel the same way about the fine scientific line that exists between the two terms – dementia and anosognosia.  So Mom denies that she needs a CPA or that she is far-sighted and needs glasses.  As her caregiver, both behaviors - whatever the cause - are equally frustrating and seemingly insurmountable. 

Caring for someone who doesn’t want your help, all the while desperately needing it, has few rewards.  It takes a gentle touch, a soft word, a patient soul to be the family caregiver of an Alzheimer’s individual in denial.

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“A Bandaid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love.

Journey with courage,
Elaine  

Author of: "Conversations with Nora: a Family's Journal with Alzheimer's"

THE BANDAID BOX…

Denial is a coping mechanism.  Pushing away a situation that one cannot gain control over is a natural survival reaction.  Mom does not want to embrace the disease for fear it will consume her.  Understand this reaction as one that you might have yourself given the same prognosis.  Let compassion guide your words and actions. 

“Be kind and compassionate to one another, forgiving one another, just as in Christ, God forgave you.”  Ephesians 4:32

“Compassion is sometimes the fatal capacity for feeling what it is like to live inside somebody else’s skin.  It is the knowledge that there can never really be any peace and joy for me until there is peace and joy finally for you too.”  Frederick Buechner (b. 1926)

 

STAYING POSITIVE…

Denial hits hard because it is often expressed in a loud, angry voice.  It pushes against your heart and magnifies pent up frustrations – both your father’s and yours.  How does one react to an angry parent when they lash out with hurtful words and statements that you know are not true?  Realize that Dad cannot help nor change his behavior – but you can change how you react to him.  Here are a few responses that may have more positive outcomes: 

• Allow your Dad to express himself freely. Ask leading questions and encourage Dad to talk about what he is thinking and feeling.   “I CAN DO MY OWN CHECKBOOK.  LEAVE ME ALONE.”  “You seem upset.  Let’s go for a walk and you can tell me about it.”
• Avoid correcting his perceptions of himself and his needs.  Redirect and distract when necessary.  “I DON”T NEED TO CHANGE CLOTHES!”  “It’s laundry day and I would like to wash everything.  Let’s go pick out something for you to wear and then you can help me sort the colors.”
• Listen rather than admonish.  Create an environment of acceptance.  “THE GARAGE DOOR WON’T GO UP.  WE SHOULD TAKE IT DOWN AND PUT UP CURTAINS.”  “That’s an interesting idea.  Tell me about the curtains, Dad.  What kind of fabric should we use and what color do you want?”
• Choose your battles carefully.  Weigh how important it is to address what was just said or done.  Let go of the inconsequential and celebrate your time together instead.   

http://www.healingwell.com/library/alzheimers/bryce1.asp

 

TREAT YOURSELF…

Learn as much as you can about your parent’s illness, for in the knowing, you will gain a tiny bit of control over the disease process.  Treat yourself to a trip to the library - Yes, the library!  It will get you out of the house for some time on your own.  Explore the symptoms of AD and how caregivers around the world address and respond to those symptoms.

Seek out other caregivers with whom you can share experiences and tips.  There is nothing quite as comforting as knowing that you are not the only one dealing with the quirkiness of dementia.

Know your limits.  Treat yourself to permission to say “No” to other commitments and outside pressures.

Gentle Reminder:

Although at times you feel that you are super human – and many times you are! – you do have feelings that need to be expressed in a healthy forum.  There is no guilt in feeling anger or disappointment.

Caregiving Support & Help – Tips for Making Family Caregiving Easier

http://www.helpguide.org/elder/caring_for_caregivers.htm

IN THE NEWS…

Anosognosia: Lack of awareness of dementia

http://www.alz.co.uk/icaniwill/library/family-carers-and-friends/diagnosis/anosognosia

SAFETY TIPS…

Mom’s safety can be threatened by her own inability to correctly assess her true cognitive abilities.  Thinking that she still has control of a car or knows how to operate the gas stovetop are prime examples of how this type of unawareness puts her at risk.

Conduct a safety check of your mother’s residence.  Encourage her to show you how to run the washing machine and dryer, the oven and stovetop, the garage door, and so on.  This inspection tour can be done on the pretense of checking that everything is in good working order and nothing needs to be repaired.  Check her ability to sort and administer her own medications by asking her about the refill process on prescriptions. Observe when and how she takes her meds.

One of the most dangerous aspects of Mom’s belief that she can still safely operate a motor vehicle.  By careful observation and going for a ride with her, you should be able to determine if she is still able to control the car and has a sharp enough response time and eyesight.  The danger of becoming lost should also be a concern for those with anosognosia, and giving up the right to drive is often a sign that your parent has worked her way through denial of her cognitive and physical abilities.             

ABOUT ALZHEIMER’S…  

What most family caregivers think of as a state of denial is in fact anosognosia.  While denial is a  reaction to something that the individual wishes to ignore or reject because it is too difficult or stressful to accept as truth; anosognosia is an unawareness on the part of the individual that their memory is declining.  The great majority of people with AD have some form of anosognosia and may begin to have difficulty with daily living skills and routines, such as keeping gas in the car or remembering to feed the cat.

Anosognosia is truly terrible for family caregivers because they are trying to help a person who insists there is no need for help.  The loved one may refuse to see a doctor or receive any type of medical treatment. They may become angry when others accuse them of forgetfulness, making poor decisions, making up stories, mishandling money, or not taking care of themselves. They are convinced that there is no problem in daily functioning. They may become more spontaneous and make embarrassing or intimate comments; they may be less inhibited and start conversations with strangers without acting uncomfortable or concerned about their own behavior.  The seriousness of letting unpaid bills pile up completely escapes them, or they may not realize that they have stopped bathing and wearing clean clothes and have developed offensive body odor and possibly infections.

It may be quite a challenge to provide help to such a person and the family caregiver must remain ever vigilant, patient and kind.  Preserving the loved one’s independence and self esteem as an adult is paramount, and the compassionate caregiver will find ways to reach out and guide them both on this journey through the haze.