The Long Goodbye, Part 1: Alive Though Different: Anticipatory Grief During Alzheimer's Disease

This is the first in a series of posts about what it is like to live with Alzheimer's Disease, what comes after the death, and how to compassionately support a family during this journey.

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Those of us on the "outside" of a family facing Alzheimer's Disease, assume they are experiencing the 'evaporation' of a dear person. Yes, there are changes to a familiar personality, but in this post, we will learn a critical fact:

"There's is a person in there."

Responding to the common labelling of dementia as 'the long goodbye', Richard Taylor, Ph.D. mused:  "When you hear the diagnosis, you feel like you are dying; as people hear of your diagnosis, they start saying 'goodbye'. Instead, please say 'hello!' 

At the age of 58, Dr. Taylor was diagnosed with probable Alzheimer's type dementia. A founding member of Dementia Alliance International, Dr. Taylor served for more than a decade as "an advocate and global voice for people with dementia," until his cancer death on July 25, 2015.

I encourage readers to see any of his films or read his insight-filled memoir, Alzheimer's From the Inside Out.  After viewing Be With Me Today, I threw several assumptions (and a first draft of this post) out the window. Dr. Taylor's key points are:

•  "I am a whole person; I may be different but I am not half empty."
• Our assumption that someone is "a shell" of who they once were is erroneous. 
• "We flourish in a different culture. Cognitive decline is real but there can be growth and learning, too!"

• "While losing the ability to convey thoughts, sometimes behavior becomes the voice."
• We assume that behavior changes must be 'handled,' and that lessening inhibitions are a problem.
• Instead, these are doorways for new experiences if families and caregivers "partner" with the person--asking and offering the chance to dabble in singing or other self-expression. 

• "We need enablers, not disablers:  
• Allow us to be who we are.
• Allow us to have dignity and a sense of purpose.
• Look for ways to be supportive instead of punitive or controlling."

Is the family's journey all about 'anticipatory grief'?

All of the "we used to do's" and "she was so good at's" press on hearts because it's not just about the person with the disease:  your life has irrevocably changed, too. Changing roles brought on by changing abilities, affect running the household, expressing intimacy, and socializing.

The Alzheimer's Association provides myriad resources, including peer-to-peer support groups and online message boards, to help families learn and cope with the disease. Comments on this journey, shared on alzconnected.org message boards, include:

The Detour of an Alzheimer's Diagnosis

"I woke up feeling like I can not do it anymore. I pray all the time that God will give me the strength to keep going."

"No one really understands. You say 'cancer' and everyone bows their head with compassion. You say heart attack, stroke, or any other bloody thing and you get uninhibited support. But you say dementia and most of the time it's the big blank stare...It's a lonely disease filled with heartbreak that can stretch out over years and years, with no clear pattern and no predictability."

"We should be enjoying our retirement years, but this detour wasn't in our plans." 

A Compassionate Response

A compassionate response to the Long Goodbye begins as a listener. In various settings, I have found myself listening to a caregiver pour out weariness and frustration. Give someone five minutes of your time; let them vent. It helps.

Sometimes, just offering a little unrelated humor loosens tension like a deep breath:
a line from a sitcom, a cartoon from the newspaper, or one of those 'kids say the darndest things' viral emails or YouTube videos.


If you are able to provide some support during the caregiving phase:  a respite visit, chores, a nourishing treat--it helps.

Suggestions for a Respite Visit

As I continue to harvest insights from Dr. Taylor's memoir, I'd like to share a few of his suggestions for supporting the person with the disease, during a visit:

SING and HUM.  

• Anything from children's songs to hymns to well-known commercial jingles (especially those from the early years of the person (long term memory). 
• Sing out loud--loudly! "It's much more satisfying if done with all of your body instead of just between your ears."
• Richard says, "singing helps me feel that I am feeling okay and, in fact, good."
• "Humming makes your lips, mouth, and throat feel good."

LISTEN TO AUDIO CHILDREN'S BOOKS.

• During Richard's decline, he spent a great deal of time with his young grandchildren, and one of their favorite shared activities was reading books. As Richard's reading skills declined toward those of his five year old granddaughter, they shared some of the task.
• Listening to children's audio books is quite entertaining. With different character voices, music and sound effects, it is very entertaining. If possible, have the print book (loaded with illustrations, of course) to share, as you listen.

Keep in mind that individual preferences do exist--and change. And remember, this person you are visiting, IS A PERSON. Here are more suggestions from Dr. Taylor:

• Make eye contact.
• Use the person's name, often.
• Speak slowly but, unless you have been told he or she has hearing loss, do not raise your voice.
• Accentuate the positive and spend time exploring their recollections (of long term memories.)
• Listen.
• Pause from time to time and ask:  "How are you? Shall we do this some more?"
• Acknowledge responses and participation by saying 'thank you.' 
• Your expressions speak volumes; yes, this disease is confusing from the inside and the outside:  Smile!

The Long Goodbye, Part 2: The Empty Sigh After Alzheimer's Disease explores the stages of grief after a dementia related death. I will present some insights from therapists and researchers, and guidance for your continued compassionate contact.

Thank you for caring!