Lost a Mother, Gained a Friend

Mind-n-healthGal.1pngIn the course of our lives Joan has taught me many things, as one would expect from a devoted mother. However, my greatest lessons have come in recent years. As time has changed us both, the role of mother has fallen away and we have become friends. She, my friend who forgets, and I, her friend who knows. I am uncertain as to when or how our relationship transformed. But transform it did, and acceptance of my new status has been integral to understanding her experience.

Facial recognition is faulty at best. She does not always see her daughter when she looks at me. Her brain has re-associated me as a friend, and oddly, one friend in particular. A woman her age, who is also a widow and her long-time neighbor from Almaden. Perhaps we became connected as one person because we both evoke a sense of familiarity and we share the same name, Diane.

Joan often introduces me to people as, “my good friend and neighbor, Diane”. I smile back and say, “Hello.” My face, she may or may not know, but my name she remembers. I am grateful for this small fragment of memory, even if it is neurologically linked to the wrong person.

When Joan and I are together, she rarely sees her daughter anymore. Most often, she encounters a very good friend who knows her preferences and needs in an almost supernatural way. She says to me, “It is nice to have a friend who knows me so well.”  “Yes, a special friend indeed,” I respond.

Joan does not know where she is in location or time and she may or may not recognize the faces of loved ones. Yet she remains very much herself in many ways. She continues to seek a purpose and expects those around her to, “make themselves useful.” Always self-sufficient and independent, she remains imperiously in charge of what she will and will not do at any given moment. Once very practical, she has developed lapses in judgement. She seeks to go home, looking for her parents or her long deceased husband. If allowed, she would walk for miles seeking that which she will not find.

When I arrive to visit, her eyes rest on my face, I watch as she assesses me for a brief moment before her face lights up with joy and recognition. She remembers in her heart that we are close, that she can trust me, that we have fun together. She greets me as she always has, with an all encompassing hug, a twinkle in her eye and a chuckle. She does not reveal any confusion as to who I am as she stands up from her seat and says, “let’s go for a walk.”

Visiting Joan is usually as much fun for me as it is for her. There are plenty of activities we continue to enjoy together in a relationship that remains rich and fulfilling in spite of her progressing disease. Although her attention and abilities fluctuate, she continues to enjoy walking in the redwoods, listening to poetry, chatting about family and friends. It does not matter to me, that she forgets things, asks to hear a story again, or gets up to go look for somebody who is not here. I enjoy what she can track and I don’t mind repeating myself. In fact, it normalizes her to chatter about family and friends, even if some have passed away.

As we walk through the park talking about my brother and sister, Joan asks, “How is Diane? I haven’t seen her for a long time.” I respond with, “Diane is well, and she will be seeing you next week.” When I return, days later, she greets me with great joy she holds me in her arms and looks right into my eyes saying, “oh, I haven’t seen you in such a long time!”  “It’s nice to see you too mom,” is all I need to say.

Any way you look at it, Life is difficult with Alzhiemer’s. Even so, Joan’s journey has taught me tremendous lessons in communication, adaptability, acceptance, humility, love and honoring elders. My greatest learning? The difficulties in communicating with a person with Alzheimer’s are challenging, to be sure, but the same challenges are present in communication with anybody, it is only a matter of degree.

Most importantly though, I am learning gratitude. I am grateful that I can and want to be present for her. I have Gratitude for every precious moment we enjoy together; even as I carry the burden of knowledge that the window to the life of my mother and my friend, is rapidly closing.

Alzheimer’s may have taken away my mother, but has gifted me a friend.

Diana

 

Recommended Reading:

A dignified Life: The Best Friends Approach to Alzheimer’s Care : a Guide for Family Caregivers The Best Friends Approach to Alzheimer’s Care (Bell & Troxel.

 

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This entry was posted on June 18, 2013. 3 Comments

From Normal to Lost Steps in Memory Decline

Mind-n-healthGal.1png Steps Toward Memory Loss

1. Normal aging
2. Mild Cognitive Impairment
3. Preclinical symptoms
4. Dementia
5. Alzheimer’s   60-80%    with dementia have Alzheimer’s type
…… Vascular       10-15%
…… Lewy-body   10-25%
…… Parkinsons

Understanding the causes of “memory loss” can be challenging for several reasons:
Mild Memory loss is a normal part of aging.
Terms describing abnormal memory loss are often used incorrectly.
A diagnosis of “dementia” is frequently misunderstood by patients.

Nobody knows what is causing the brain changes that lead to progressive memory loss
but we do know:
1.0% decline annually on neurocognitive testing is considered normal after age 65.
2.5% decline annually on neurocognitve testing is seen in Alzheimer’s Disease.
Mild memory loss with slower processing time is normal with age.
Progressively worsening memory loss, reasoning and thinking is not normal aging.

Normal Aging
Slower recall of information names and nouns
Increased effort to learn and store new information
Heightened susceptibility to distraction
Slower processing of new information
Greater difficulty multi-tasking
Normal cognitive testing

Pre-clinical memory loss
Silent phase: no measurable symptoms
Individual may notice changes
“Patient knows but doctor doesn’t”
Normal cognitive testing

MCI
Memory loss becomes disruptive
Difficulty with word recall
Missed appointments
Fully capapable of daily activities: dressing, eating, walking, talking, driving
Lower scores on memory and language tests
Normal scores on testing other cognitive domains

Dementia
Significant loss of intellectual ability
Memory loss plus 1 or more other cognitive function
Interferes with daily activities
Low scores on memory testing plus one or more other areas of cognitive decline
Can be reverisble- rule out other causes
Subtypes of Dementia include
Mild
Moderate
Moderately severe
Severe

Alzheimer’s Disease
Irreversible with  symptoms continue worsening over time
Impaired thinking, speech, reasoning
Disruptive changes in behavior, mood

© diana@MindNHealth.com

orange jellies      Links to More Information

information on types of progressive memory loss

 

Reminiscing

Mind-n-healthGal.1png Reminiscing provides an easy technique for communication and connection

For those with Alzheimer’s the therapeutic effect of reminiscing is particularly important as it taps into a visceral place, far deeper than memory alone. Studies have demonstrated how the process of “life review”  improves well being for seniors by bringing past experience into consciousness. (Kuntz)

Care givers using reminiscence technique can use specific communication tools to bring what is hidden into awareness and help to help alleviate distress and associated stress behaviors. (Cohene)

An easy Reminiscing activity is simply to start with the words: Tell me about… 

The sentence can be finished with a known fact about your loved one. For example, I might ask my mother, “Tell me about the Robin Hood you painted on your wall as a teenager.”  “Tell me about the trip you took to California after you married.” “Tell me about what it was like to sail in the San Fransisco Bay.” And then I listen and accept without correction whatever she has to say.

The act of speaking and remembering improve cognition, reinforce language skills and offer direct a connection with you as the listener. People with Alzheimer’s are no different from anyone else in their need to connect and communicate. In fact, as memory fails, they seek connection.

Social contact has been shown to decrease disease progression and alleviate the harmful effects of isolation.

So, Next time you visit your loved-one or friend with Alzheimer’s, bring along something visual, tactile or auditory that will trigger a memory.  Poems, stories, music, photos all offer rich sources for stimulating memories.

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References
Memories of a Life: A Design Case Study for Alzheimer’s Disease Tira Cohene, Ron Baecker, Elsa Marziali, Simona Mindy University of Toronto (Canada)

The Language of Alzheimer’s

  “Out of clutter, find simplicity. From discord find harmony. In difficulty lies opportunity.” –A. Einstein

Screen Shot 2015-03-05 at 8.06.03 PM   CARE Giving teaches us to open to what we find in the moment.

Challenged daily to discover new ways of dealing effectively with the unexpected, Care Givers must cope with the unpredictable, ranging from rapid changes in behavior and health to moving and other changes in life circumstances.  CARE Giving asks that we accept change and adapt ourselves to what we find on a daily basis.  Acceptance and adaptation can be challenging. Strength, trust and courage are required as we step over the edge of what we know and enter the unknown.

Observation of our own response to a given situation encourages self-awareness, increases understanding and offers insight. As empathy and compassion grow, we begin to engage more effectively.  Speaking the language of Alzheimer’s requires the same skills as communicating with anybody.  Communication begins with being present.

Three Steps toward Compassionate CARE

Cultivate mindfulness– As a tool to return awareness to the present.

Trust the present moment– Accept whatever arises right now. Offer your compassionate attention.

Stretch into the unknown– Remain flexible, adaptable and open to anything, without expectation.

Speaking the Language of Alzheimer’s*

• Create a supportive physical environment– Simplify, avoid distractions, accommodate changes in perception and mobility.

• Empathize and Validate–Identify feelings and speak with your heart. Language fails but feelings remain intact.

• Provide an enriched life–Stimulate abilities, provide meaningful activities, praise frequently, laugh often.

• Enter their world–Join your companion right where they are.  Avoid correcting, rationalizing, arguing, critiquing. Speak in simple short sentences, Allow longer processing time. Connect through eye contact and touch. Find joy in being together.

*Adapted from Learning to Speak A;zheimer’s by Joanne K. Coste

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Resources:

Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone … – Joanne Koeing Costle 

Rita Altman, R.N.: Validating Feelings of Seniors with Memory Loss

The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s and Other Dementias, Naomi Feil, Vicki de Klerk-Rubin