Tuesday, October 13, 2015

The Long Goodbye, Part 2: The Empty Sigh After Alzheimer's Disease

This is the second 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.

Richard Taylor, Ph.D.
In Part 1. The Long Goodbye, Alive Though Different: Anticipatory Grief During Alzheimer's Disease, we followed the story of Richard Taylor, Ph.D., the remarkable author and psychologist, who lucidly lectured to sensitize others about living with the disease. Among his films, "Be With Me Today" stresses: There's is a person in there!" 
Richard died July 25, 2015.

Part 2. The Adjustment After Death

What is left of the grief process after Alzheimer's Disease finally takes your loved one?
"Caregivers' depression often improves following the loss, but not always," says Co-Director of the Center for Research on End-of-Life, Holly G. Prigerson, PhD.
"The emphasis is often on the great relief that occurs following the death, once the caregiving and agonizing is over. They think it should be downhill after that, but it's not as easy as that. These people typically have been caregivers for about 10 years -- that has been their identity and mission -- and it can be very difficult for them to regain their life." [Source]
Some bereavement comments on the alzconnected.org message boards included:

"My father died almost 4 months ago from Dementia/AzD [Alzheimer's Disease], but really, the goodbye process began last spring when we placed him into assisted living.  It was a year long good bye that was harder some days than others."

"What I miss is her company. But it was quiet around here for so long that a lot has not changed in my routine. I don't have to worry about her any more. I am surprised that I have not felt a surge of grief but I think it had just lasted so long that I am grieved out."

"It's been over six months since I sat with mom as she took her last breaths. There was a sense of relief as well as the sorrow. My emotional side goes up and down but I'm dealing with life and have moved forward."

In Time...Healing
Source: Diane Zilliox

I was struck by two of the healing factors identified by Dr. Prigerson, in a presentation on Meaning-Centered Grief Therapy:

  • The survivor must reconnect to sources of meaning for their life: creative, experiential and attitudinal.
  • The survivor must reframe their arduous caregiving experience as an important part of their life story (and the life story of their loved one.) 

These steps--though they will take time--remove the "log jam" that may have dammed up the vitality and fulfillment enjoyed before caregiving. The natural flow of life is gradually re-established, and the legacy of the deceased is now heartwarming rather than gut-wrenching.

One message board contributor wrote:
"Mostly now, I remember her as she was. Full of life and always having a positive word for everyone."

Your Compassionate Response

Your 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.

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

After death, being a good listener will be an important compassionate response, and avoid impatience! A long goodbye can be followed by an equally long recovery. Be attentive to cues that the surviving family/caregiver(s) is ready to:
  • Receive gratification from new experiences
    • You may be able to encourage or lead the way to a subscription, a hobby, a concert, a vacation. 
    • Teaming up in a volunteering project can create a bridging experience after caregiving, for feeling useful and gratified. The direction of volunteering may not be linked to the deceased's disease. Follow your friend's lead.
  • Gather the fruits of legacy
The Coach reminds you to be heart-centric:  do not assign projects or set agendas. Listen, be encouraging and "brainstorm" with your friend as topics arise.

Finally, mark the date of death on your calendar, and remember the family with an anniversary note. It will be a great comfort.

Thank you for caring!

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