The Gift of Last Words

Twilight

Twenty-four hours before his transition, weak, and sedated for comfort in his home hospice bed, Raymond called me over and said softly, "I may not be able to talk tomorrow; there are some things I'd like you to write down."  I took the notebook I'd been using to log medication doses, opened to a new page and replied, "I'm ready, Ray. I'll write down anything you wish."

Over the prior three days, once we had found the right drugs to support his comfort, Ray had spent many hours in a twilight of sleep. Disease symptoms still broke through occasionally, but there were longer intervals of peace. I believe, as do most hospice professionals, that end-of-life sleeping is often a time of life processing, healing of psyche, and soul invigoration. 

Detaching

Raymond Chappa
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While he loved gentle walks in sunny Arizona, my late husband was also a spiritual contemplative, spending innumerable hours reading and meditating: going inward. Detaching is a phase in dying, and can occur even months before releasing the body. It is the phase of acceptance and peacemaking; it may involve time with others, exchanging goodbyes and expressions of gratitude. For many though, detaching from the worldly, social realm is a choice to "listen" to another realm:  the heart space, the space of Spirit, the space of loved ones on 'the other side.' This is well documented and in my own hospice vigiling, I have witnessed seemingly one-sided conversations, or nodded when a glazed-eyed woman pointed to the window and said happily, "Look at the angels!"

Sacred Space

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Readers of this blog may have read my posts about Sacred Dying. The philosophy encourages creating an environment that recognizes death as a sacred mystery rather than a medical event. Ray and I agreed that in his final days, I would care for his comfort and honor his wish for privacy and peace. He wanted his unencumbered Consciousness free to do its work, free from emotional visitors or phone calls. Yes, it was frustrating for distant family who demanded he take a call, but I was committed to be his guardian angel, bearing a fiery sword if necessary.

Last Words

And so, in a lucid interval, Ray dictated messages as I scribbled. Profoundly aware that he had harvested these words from a very deep place, I cherished each pen stroke.

1. Ray expressed a sentence of thanks to a person who had provided support during a life-changing difficulty many years prior. He asked me to pass the message on.

2. There was a brief message to his brother, with a final wish for a pending inheritance.

3. Finally, he simply shared: 

"There is no one among you

 that I do not love.

Thank you.

No other words are necessary."

Now, two years after his transition, as my own spiritual studies guide me to new awareness, I remember that I was handed an essential Truth by someone very dear, as he stood in the doorway of eternity. It is a Truth we have read in the world's great sacred books. It is a gift.

Thank you for sharing and caring!

Comfort Objects: Rereading Memento Notes

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The Growing Through Grief series

I have a notecard tucked in a dresser drawer that warms me just by its cover. It is undated but, thinking back to when I had that box of notecards, I place the note around a time I wanted to relocate. "Make your own Adventure" it urges. Inside, my late husband wrote a special message of admiration and support, and it 'wows' me every time I read it. 

The Condolence Coach has often used the George Santayana quip 'there is nothing sweeter than to be sympathized with.'  But now I know there is nothing sweeter than to be encouraged for being who you are and for the writer's certainty that great things are still to come from you.

I stumbled upon the card while sorting through papers after my husband's death and then, it became a note of encouragement I periodically turned to. As my grief journey progressed, my need for the card lessened. But just yesterday--about 13 months after the death, I yearned for that experience of being deeply known, accepted, and cherished; I opened the drawer, and there it was, waiting to give me a handwritten hug and high five.

Comfort Objects

Growing through grief is a process of finding, using, and very gradually decreasing dependence on comfort objects which stand in for your loved one. Rest assured that anything qualifies as a comfort object and no one but you can choose it. It can be as big as a house or as tiny as a hair. I wrote on the subject of comfort objects and legacies in these posts:

Plaques and Pavers: Memorializing Love

Greatest Generation Dads

Unusual Comforts

A Life Story in 15 Songs

Recipes Soothe Our Souls

A Lasting Tribute

Readers should be very clear on these points:  

Gradually decreasing dependence on the comfort object is:

• entirely up to the grieving individual
• can occur quickly, very slowly, OR NEVER
• is one indication of growing through grief, but is not a required step

Some comfort objects are assimilated into survivors' lives. Comfort objects can be given as legacy gifts like Dad's cherished pickup truck is now driven by a grandson; a warm sweatshirt continues to dispel morning chill; Mom's apron acquires new splatters as the dog eared pages of her cookbook guide new hands to great chili or that must-have Thanksgiving side dish.

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Visit any park or museum and you will see a fundraising opportunity put to good use. Organizations offering the design and installation of memorial plaques and pavers touch hearts with a public comfort object. My friend Lauren had experience with this and encouraged me to consider it. I enjoyed creating such an item for a community park in remembrance of my late husband. The plaque inscription, Providence was his earthly compass, Love his North Star, warms not only my heart but will do the same for anyone who sees it.

Encouraging Aftercare

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Back to that note of encouragement...Because notes of encouragement are so powerful, so nourishing to the spirit of a grieving person, I would like to suggest readers consider writing them as "aftercare" to someone on the grief journey. My cousin Susan lives across the country, but she and her late mother regularly sent me cards of encouragement. Messages like you are strong, you are doing exactly what you need to do at this time, I admire you for _____, the rainbow on this card  is waiting for you are bravery boosters, and their arrival in an otherwise ad filled mailbox always put a smile on my face. 

5 Key components of a note of encouragement

1. Choose a card with an inspiring image or inscription
2. Refer to the inspiring image or inscription in your personalization
3. No timelines: life is meant to be a flow
4. Be effusive (that means be unrestrained and heartfelt)
5. Be optimistic (see the gifts and potentials even when your recipient can't)

Is there someone you could encourage today?

Thank you for caring and sharing!

A Dozen Keys to Sharing Condolence and Comfort

 Readers,

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It's been awhile since I just wrote some basics about supporting a grieving person. So here is a refresher, listing a dozen simple ways to express sympathy and render comfort. 

A Dozen Keys to Sharing Condolence and Comfort

(from your trusted source: The Condolence Coach)

1. Listen.  2. Acknowledge that loss is difficult. "Gosh, this is a difficult time!" 3. A gentle hug or nonintrusive touch may have more value than words.  4. We all die, but there is no "easier" age for the grieving; this includes a miscarried child. 5. Do not judge, dish out platitudes, or give unsolicited advice.  6. Learn and use a name, but it's okay to just write 'your Mom.' 7. Share a special memory or legacy, but never embarrass or reveal a confidence. 8. Ask a survivor for one of ​their​ favorite memories.  9. Some digital messages are appropriate, but seriously consider writing a note. 10. There is no time limit to acknowledge a loss.  11. There is no time limit to grief; respect the survivor's journey and choices. Don't suggest things like adopting another pet, that they start dating, or that they try to have another baby. 12. Condolence gifts such as a thinking-of-you snack, journal or keepsake box are helpful gestures, easy to process by young mourners.

Thank you for caring and sharing!

My Turn to Grieve

The Growing Through Grief series

I am known to many as the one who is easy with matters of dying and death. I can discuss ways to make the end of life sacred, the paperwork of death, funeral options and military honors. I do this with the conversational tone you would use to discuss the price of organic veggies, local car repair shops, or summer travel plans. For over ten years, I’ve been known as the Condolence Coach by a world of readers, but I am long overdue for a new post, and here’s why.

Last fall, when my mother entered hospice, my zeal to discuss death’s details and grief journeys, withered. In truth, it cowered in the corner, shunning all but the most necessary social contact. Sharing the life-altering news became my daily ‘small talk.’ A dog walking neighbor might comment on last night’s wind and I replied: “my mother is in hospice.” Meeting another shopper at the grocer’s card rack, I offered, “my mother is in hospice but I think she’ll make her 90th birthday.” To my relief, people were kind.

Perhaps it’s not accurate to say I lost my 'zeal,' when the real loss was ‘innocence.’ While my experience and knowledge as a hospice volunteer and funeral professional deepened insight and compassion, it was always ‘someone else’s loved one.’ Detachment preserved the innocence of my heart. Now, this was my heartache.

Sadness Selfie

Across the country, heavily sedated with the standard hospice cocktail of morphine and lorazepam, Mother wasn’t taking birthday phone calls. I quelled the panic of her slipping away by reaching out psychically. I imagined her approval and laughter as I played dress-up with the pink paisley poncho she had sewn for me fifty years ago.

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Digging through my jewelry box, I ringed its neckline with lapel pins she’d given: quirky cat, pine cone, straw dolls, and artsy swirl. Like the young bride seeking her mirrored reflection on the morning after deflowering, I sought mine and took a selfie, seeking to preserve the transforming mystery of my profound sadness. 

Until I was called to serve at my mother’s deathbed, my vigil occurred thousands of miles to the west with intense meditations, journaling, tears, and talks with my husband. I began to trust the truth of a message I’d texted when she was still able to communicate: 

“You are a fabulous woman:  

and will always be so, with or without a body.”

Photo used with permission,
Jim Hunter, Fairbanks, AK

Sacred Grieving

I began reading Grieving- the Sacred Art, Hope in the Land of Loss by Lisa Irish. Long believing death is not a medical event but a sacred one, I embraced the idea of sacred grief. Initially stunned by what Irish calls “a swirl of painful and overwhelming emotions,” I felt validated by her words, accepting that my moments of disorientation were sacramental emotions. Irish promised that if I did not identify grief as ‘the problem’ it would become ‘the solution’ and offer me hidden gifts. 

The first gift was an opportunity to vigil at my mother’s bedside. Though I was not new to this process, the intimate ministry of care for someone I adored was as riveting as it was taxing. ‘Profound’ remains one of the few useful words for this time.

Photo used with permission,
Jim Hunter, Fairbanks, AK

In the months since my mother’s death, I have received more of grief’s gifts: peace, wisdom, and gratitude. Glimpses of siblings’ grief have proven that we all walk personal paths through loss. My long held advocacy of the value of condolence notes, was affirmed. After I shared the news of my mother’s death--along with the narrative obituary I’d composed, the arrival of sympathy cards and supportive emails became an invaluable balm. I shared most of them with my family, thus multiplying their comforting impact. As the Condolence Coach, I reversed my rigid opposition to electronic condolence; for expediency and privacy, it has a place.

Sacred grieving deepened my spirituality. I celebrate my mother’s legacy of preferences and mannerisms. I believe her soul remains within reach through love. I find that memories should be curated-- as enduring or disposable. I strive to avoid regrets-- those shoulda, coulda, woulda’s-- which only sour the sweet gift of recollections.

Am I done grieving? Deadlines and calendar pages have no place in this sacred experience. I have--and will have--days of longing for my mother. 

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In 2014, I reblogged Elaine Stillwell's article, An Emergency Kit For a Bad Day . She stressed the importance of self-care, and the value of being prepared for the unexpected "black days" that can arise after a loss. My emergency kit also includes outdoor exercise, meditation moments, gratitude for a birdsong greeting, the surprise of a heart rock in the trail, and volunteering in my community. These are the stepping stones for my inner peace, one day at a time.

Thank you for caring!

Stuck On You: After Death, Is it Devotion or Baggage?

The Growing Through Grief series

I am always seeing metaphors. 

When a mammoth pine topples in the forest, it retains its anchoring grip on elements of the environment. Rocks and soil pack the lattice of roots that now face skyward. It will take decades and decades of weather and rot before a letting-go.

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How long should grief take?

The Condolence Coach has skewered some psychological models that want a quick exit to mourning. In What's the Big Hurry? Stop pushing the bereaved I highlighted the heavy burden of expectation placed on a grieving person. It seems to me, in a world that celebrates the "individual," we must acknowledge "different strokes for different folks...even when it is socially awkward.

Wearing your late husband's flannel shirt or pursuing regular paranormally-channelled conversations with your dead child are choices. Unusual comforts in grief should not be judged more severely than the spectrum of comforts we each choose just to make it from sunrise to sunset: shopping, tattoos, exercise or extreme sports, alcohol, drugs...

Devotion or baggage?

Devotion delivers comfort but I would suggest that baggage delivers stress. If an ongoing bond with a deceased person engenders feelings of gratitude, warmth or inspiration--human growth and awareness of our interconnectedness are nurtured. 

If an ongoing bond with a deceased person engenders feelings of powerlessness, obsession, guilt, anxiety, or the burden of unfinished business--harm is inflicted and human growth is stymied. This grieving person is stuck.

Helping someone get unstuck

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As you observe how the lanes of positive or negative seem to flow, remember that giving advice is tricky. In fact, the Condolence Coach wants you to avoid giving advice and instead, ask for advice! In essence, you are asking the stuck person to tap into their own inner wisdom.

This nugget from the writers of Highexistence.com point out:

"Once we stop taking guidance from all of those outside sources who tell us what we should do, we are free to explore what we want to do, what we’re meant to do, and what we’re truly capable of."

 An important component of your help is to stay in the present: focusing on the present circumstances and emotions of someone who seems "stuck."

• How are you today? 
• What are you doing to care for yourself, today?
• How did thinking about [person/stuck situation/behavior] make you feel?
• Is there another way to consider that [stuck situation] so it feels better?
• If I was feeling the way you are now, what would you tell me to help me move forward? 

If you're the one who is stuck

Michelle Maros, Creative Director of  Peaceful Mind Peaceful Life, describes 5 Gentle Reminders for When You're Feeling Stuck. She reminds us that this time in life has a purpose, but to find it and move forward requires some reflection:

"Often times when we are feeling stuck, it’s a sign that there’s an action we could be taking (or that our soul is begging us to take), but for some reason we just aren’t. Usually it’s because we are afraid. And that’s okay. It’s okay to feel fearful, but it’s important to recognize that this fear is what is bringing you this feeling of “stuckness.” If this resonates with you, ask yourself what small, gentle action you can take to move yourself forward."

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"Small, gentle action" is a beautiful way to proceed. In the grieving process, you--or a person you are helping, could make a once-daily choice from a checklist such as this:

• Sort belongings of the deceased into groups:  donations, legacy gifts to friends and family, discards, returns to lenders or businesses (such as medical supplies), and even a group for shredding-destroying old records or extremely private, confidential material (use caution before an estate is settled--consult an accountant or attorney.)
• Take action on one item or one group described above:  start with an item that will warm your heart or the heart of the recipient.
• Do one experience or action that you "used to" enjoy:  jot a poem your journal; sit down at your piano; walk in a park, museum or gallery; pick wild raspberries; go out for coffee or an ice cream cone; get a massage, facial or manicure.
• Do one experience or action that satisfies a dream:  rent an RV and go somewhere; refresh an area of your home; adopt a shelter dog or cat...or learn how to volunteer at the shelter!

 As Michelle points out, you may, at first, feel that your "efforts aren't working," but she encourages that positive outcomes--even 'magic' are the result of patience and positive action.

Thank you for caring!

Plaques and Pavers: Memorializing Love Beyond a Grave Marker

A bench plaque at a community park
 in Tucson, Arizona. Author image

The Growing Through Grief series

You've seen them and you may have walked on them:  memorial plaques and paver bricks are extremely popular tributes! Typically, their purchase is a contribution to the community or a nonprofit organization. Yes, many plaques and pavers can be celebratory, philanthropic, and even not of a memorial nature, but with greater frequency, sending funeral flowers is not an option.

For example, when a "viewing" (a funeral home visitation with the body in a casket) does not occur, there may or may not be an appropriate occasion for flowers. Charitable memorial designations are common, but the marriage of a memorial tribute with a lasting presence (beyond a cemetery grave marker) is comforting, practical, and often renders great benefit to others.

I recently met Jeanne when she was in Tucson to scatter her sister's ashes in the mountains. Her sister, Suzanne, had been a long time Tucsonian and member of the Sabino Canyon Volunteer Naturalists.

Suzanne contributed countless hours educating classroom groups about desert animals and ecology. Jeanne told me that Suzanne had lived other places, but loved the desert. During her illness, the family had arranged for Suzanne to be named on a plaque of Sabino Canyon supporters. It was a special day, shortly before her death, when Suzanne stood beside the tile which declares her work as "A Guide to Scenic Splendor."

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Suzanne's heart lives on in the desert. Author image

The Naturalist group also sponsors a memorial garden where rustic, inscribed stones bear the names of deceased volunteers (pictured below.) For many, having a place to visit and feel close to their departed loved one, is important--and it doesn't need to be a cemetery! In fact, there is comfort in knowing that a modest donation for the purchase of a plaque or paver, continued a mission or project that gave meaning to the loved one's life.  Jeanne and her family beamed with a peaceful joy in the presence of Suzanne's legacy.



How can you memorialize a loved one in a similar way?
If there is a charitable designation made, don't just stuff a check in an envelope. Call the organization and ask about their enduring opportunities. Consider exploring:

• the hospice that assisted the family; they may have a patio of inscribed pavers.
• a service organization that the family supports; they may have benches or furnishings that can be "named."
• a comment of caring once expressed by the deceased; "I love birds" could point to a memorial gift with the Audubon Society, or your local bird and wildlife conservation nonprofit may invite funding for fixtures in a local sancuary. Ask! 

Some view memorial plaques and pavers as a final gift.
The beauty of the gesture is that its legacy is shared by so many, for many years to come.

This may also be a way to mark an anniversary of death.
Don't feel that you have to immediately identify and arrange a plaque or paver. There is so much going on in the weeks and months after a death. Why not consider this for an anniversary year?

Thank you for caring! 

Clutter Makes a Mess of Grief: How to Help!

Few people will admit that their possessions have crossed the line from "a little messy" to big problem. From time to time, we may all experience the problem--often in small doses:

• The tee shirt drawer doesn't quite close.
• The coat closet has no room for a visitor's jacket.
• It takes significant excavation to unearth the potato peeler from a tangle of kitchen tools.
• The garage workbench has lost its usefulness, covered with parts, packaging, and paraphernalia.

Fixing Small-Dose Clutter

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A small-dose clutter problem can be resolved in fifteen to thirty minutes, restoring functionality to a space. Common sense consigns the torn and broken to trash; goods that have fallen out of favor become a bag welcomed by a charity store. Some of us logon to craigslist or ebay and turn stuff into cash; freecycle facilitates a feel-good way to connect with someone in your community who can use what you no longer need (craigslist also has a "free stuff" category, and my household has enjoyed many grateful handshakes.)

Heavy Environments

Over the years, I've been in many homes bearing a lifetime's accumulated property. These environments bear a weight that exceeds the measurable:  

• A burden of confusion.
• An expense of duplication.
• The distress of indecision.
• The demand of nostalgia.

I have known people who's estate planning included diligently purging excess "to make it easier for my executors." And I have known folks who become infirm, look around their rooms packed with possessions and say, "the kids will sort it out." 

What is it like to die in a messy room?

No one comes back to complain, but Megory Anderson, founder of the Sacred Dying Foundation, encourages "establishing a sacred presence." She and her team offer many excellent resources for lay and professional use. In her free booklet of vigiling tips, De-clutter the bedside area is number 1! If you believe that death is not a medical event but a spiritual one, the simple practices that invoke honor, respect and sacredness are rich in love but trimmed of turmoil. During active dying, remove from the bed's radius those piles of medical and hygiene supplies, displaced household goods, and even beloved room decor that distracts and act like guy-wires holding tightly to the person who must detach and leave.

When grieving is literally 'a mess'

The time and process of sorting through the belongings of a loved one can be comforting and surprising. "I didn't know she still had that", "She really liked purses!" "Those cases of cereal in the basement are all expired." "Look what he stashed in the crawlspace." Understandably, we will all leave some degree of stuff to be dispersed or disposed of. The window of time to empty a room or residence can depend on a number of things:  policies of a skilled care facility, avoiding the cost of another month's rent, and whether a home will be sold or remain in the family. If your acquaintance with a survivor is familiar, consider offering assistance to sort, pack, and disperse property. 

Sympathetic support: a condolence 'gift'

It is imperative that your assistance be grounded in trust, and a plan of action that is acceptable to all legally responsible survivors. Marie Kondo, a Japanese organizing consultant and author of The Life Changing Magic of Tidying Up, and Spark Joy has some interesting tactics for decluttering that can certainly be applied to an entire home clean out.

1. Tackle categories, not rooms (focus reduces the burden)
2. Respect your belongings (take care of what you keep)
3. Nostalgia is a trap (time spent in reverie and sentimentality blur good judgment)
4. Dedicate efforts to the life of the decedent (express this out loud)
5. What you keep you must truly love ("like" or "useful" don't make the cut for a legacy item. See my post on Keepsakes)

Whether your assistance is presented first, in your condolence note or, in a later companionable visit, your offer qualifies as a remarkable condolence gift.

Thank you for caring!

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.


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

[Source]

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
• You may be able to encourage or lead the way for the family's special use for mementos (such as donating a wedding dress)
• A legacy is often comprised of memories and kernels of wisdom. Help a friend celebrate simple links in the chain of legacy by speaking and writing of them. 
• A survivor may want to participate in fashioning legacy by embarking on the completion of the loved one's Bucket List. 

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!

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!

Greatest Generation Dads: Remembering Their Legacies

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Legacies are often unwittingly fashioned through life choices and actions. Most families recognize the importance of preserving the stories of their heritage. Moment by moment, for generations, photographers were engaged, or personal-use cameras set up to record that piece of history. In my years of funeral service, visitations and memorial gatherings were enriched by the poster board collages on display. Their assembly was often a therapeutic task: browsing photo albums to select images which could tell the life story--one legacy moment at a time.

The exodus of a great generation

Men and women born in the first third of the 20th century did not spend much time contemplating their legacies. They worked hard--often with their hands and backs, and often under the duress of worldwide upheaval:  the Great Depression, World War II, Booms and Busts and yes, Bubbles. The goodbyes are coming fast: about 600 World War II veterans die each day. 

As the Condolence Coach, I encourage everyone to observe, remember, and share. The result--when stories are retold, provides tremendous comfort and insight to persons who grieve. Father's Day nears, and I decided to gather legacy stories of "great generation" Dads. Listening for  legacies will be helpful when the time comes to write a condolence note.

Some legacies hold admiration for a character quality 

“The memory of my dad’s love for my mother, is a legacy I cherish,” Lyn shared. Though that love was evidenced throughout her life, Lyn remembers her father, Ellis, during his home hospice care: “Even when he was sick and in bed, he wanted to be sitting up, out of the bed, ready to greet his wife when she came home.”  The memory is bittersweet for Lyn, long-divorced, but she believes in the ‘gold standard’ for all marriages.

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“Daddy was a giving person,” Libby shared, and described how he was never too busy to be helpful, playful or community involved. “Chores were set aside to play a board game or croquet; to ferry me to piano lessons and recitals,” she continued. “I admired him greatly; he’d think nothing of hosting a crab feast in our yard for a big crowd of the Penn Daw Fire Dept. Auxiliary.”

Some legacies are rooted in wonderful experiences

Larry shared, “The legacies my father, Joseph, passed on to me and my seven siblings were not tangible things—like a pocket watch or money—but much more valuable: an all-encompassing value system. I grew up during the Depression, and my dad was busy keeping bread on the table, but found time to nurture our imaginations, our skills, our characters, and our spirits. To me, these legacies never tarnish, never depreciate, never decay throughout life.”

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“When I was a boy, I was my dad’s “tag-along” buddy,” remembered Ray. “We’d go to places like the VFW Post, the Knights of Columbus Hall, the barbershop, and bricklaying side jobs at the homes of his friends. I enjoyed being a part of ‘Alfie’s’ world, listening to conversations while having some pop and chips. Dad’s legacy was showing me how to be a good buddy.”  Friendship and helping go together, in Ray’s view: “When I help a friend cut down a dead tree or fix a plumbing problem, I know my dad is smiling down on me.”

Old-fashioned, practical advice is a common legacy 

 “My dad was one to share a few pearls of wisdom,” Christine chuckled. “My favorites are:
1. Honesty is the best policy.
2. Don't leave for tomorrow what you can do today.
3. If you don't have to stand---sit. If you don't have to sit---lie down.”

Bev grew up in a family business where everyone was involved. “My parents gave me so many life tips, like:  
Take pride in your work and, finish what you start.
If you can't pay for it with one week’s pay you can't afford it (except for a house and a car.)
Try to accept others for who they are and remember, we are all different."

There are legacies that read like an eHow page

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Christine continued: “My dad, who was raised on a sugar beet farm, told us that the WHOLE apple is good, and sure enough he would eat the whole thing. And now, I do too.” She recently learned that the apple seeds are very nutritious. “People give me surprised looks, and I explain,’that’s what my dad taught me.’”  
Beverly, just shy of 60, has never been in an accident, thanks to her dad’s bald instruction: “Drive like everyone is out to kill you.”

Combing legacies for condolence cues

These most-prized legacies are weightless yet fill the heart. In writing a condolence note when a friend has lost a father (in this example,) recognize something you perceive to be a legacy. It may be an first-hand observation of the man, or a quality of character adopted by the child.
Here are some suggestions:

“I could sit for hours listening to your Dad's stories about ____. He will be greatly missed.”
“Your father’s carpentry tools will never grow rusty. Like him, you’re ready to help …”
"Your dad greeted everyone at the church door with a cheery ‘_______’’”
“I remember watching you work on that Camaro, with your Pop …"
"Your father inspired me to volunteer at _____ by his work with ______, "

For more insights about writing a condolence for the death of a greatest generation mother or father, read:

Death Over 85
Curb Your Enthusiasm? Not in my condolence!

Thank you for caring!

3 Adopted Bucket Lists: Do's and Don'ts

This spring, I read a story about a young woman who decided to finish her Grandma's bucket list. 

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Does this happen often? I wondered. Increasingly so! 

Embracing the bucket lists of others provides 'instant life purpose' and a unique form of tribute. Some orphaned bucket lists 'trend' on social media and are fulfilled many times over.

Missing In Action! A Soldier's Sister Keeps Vigil

'The crash woke me up from a sound sleep.'

"I'd dreamed I saw the smoking wreckage of a car or plane that had crashed in the desert of the American Southwest. It was so real!" 

Douglas Ferguson in Flight Suit. (Sue Scott)

'And later that day, December 30, 1969, I knew my brother's spirit had come to me in that dream, as my family received a phone call informing us that Doug--USAF Captain Douglas Ferguson, had been shot down over Laos.'     -Sue Scott

For Sue Scott, it has taken 44 years to reach this day. Doug's remains were recovered from the crash site in April 2013, and identified this past February. With a deep sigh of grief mixed with relief, she says:

"He is ready to be home now." 

Doug in Uniform (Sue Scott)

"Home" will be near Mom and Dad in the family's Tacoma, Washington gravesite, during Doug's Committal Service with Honors on May 2, 2014, surrounded by family and devoted supporters.

"I always thought I would get lucky with an answer," Sue admitted, "taking it 'one day at a time'" (for 16,060 days.) She likens the experience of a loved one missing, to losing a child in a store. "At first, they feel so close; you know if you keep looking, you will be reunited." Sue explained that, early on, the usual "signals of a crash" were not evident, "so there was hope."

But obtaining information about Prisoner of War/Missing in Action (POW/MIA) soldiers' status was hard won, and next to impossible in the regions of conflict. The new anti-war era of pushing back gave stunned families, like Sue's, a voice. The National League of POW/MIA Families was formed in 1970 and to this day, provides powerful advocacy.

"1,642 Americans are still listed by DoD as missing and unaccounted-for from the Vietnam War...The League seeks the fullest possible accounting for those still missing and repatriation of all recoverable remains.  The League’s highest priority is accounting for Americans last known alive."   Status-of-the-POW/MIA Issue - March 11, 2014

Another 'voice' came in the form of brass and copper bracelets launched by a Los Angeles, California student organization, VIVA (Voices in Vital America) that embraced the desperation of wives of pilots who had been declared MIA in Vietnam.

Through and beyond my 1970's school years, my mother, Elizabeth, like 5 million others, wore a bracelet engraved with a soldier's name. "As the mother of teenagers, I was so sorry--and yet so proud, to wear it," she shared.

Sue Scott wore a bracelet with Doug's name, but being vocal about her missing brother was not always easy. Captain Ferguson's status was Missing In Action (MIA) until a military review board amended it a few years later to: Presumed Killed In Action.  Sue said, "the abnormal became normal; my focus was always broader than my own loss. I was driven to keep the issue alive," even as emotions about the Vietnam War ran hot.

She continued, "Co-workers respected my work with the League but, petitioning door to door, I'd been told, 'your brother got what he deserved.' That hurt."

Over the years, Sue has found these things helpful to take care of herself:

• Keeping close to faith and family.
• The recent creation of a memorial website for her brother: Forever Missed memorial tribute to Doug. "It's been wonderful to connect with people I haven't seen in so long, people who knew and cared about my brother."
• Having a mission-- a deep sense of purpose.

Living a purposeful life has, for Sue, been "an opportunity to make a small difference in the world so that the families of those who serve today--and in the future--will never have to wait more than 40 years for answers, and our service members will be returned to their homeland."

In addition to her long tenure with The National League of POW/MIA Families, Sue serves on a review committee for appointments to U.S. military academies (Doug was a graduate of the Air Force Academy.) Here too, her passion has a voice as she assure candidates, "we've got your back." And Sue Scott is proud of what she calls

 'Doug's Final Gift'

"This was not a journey I made by choice. But faced with a challenge, ordinary people can become part of something bigger. Collectively, we accomplish much, and impact the world."

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AFTERWORD:   As I researched and wrote this post, I thought of other types of missing persons...

a family nightmare that begins with a runaway, a kidnapping (including parental,) a disappearance.

These are complex losses, deeply painful, and often unresolved. The burden of uncertainty is crushing. I will write more on this loss, in the future.

To send a note of sympathy in an unresolved loss situation, the Condolence Coach suggests:

• I am so sorry you are facing this.
• I know you love (name) very much.
• No matter what happens, memories of (name) live on, for me. (Include a brief, happy story, if you wish.)
• I pray for you and (name) every day.

Read Sue's One Year Anniversary Reflection 


ADDITIONAL POSTS RELATED TO MILITARY FAMILIES:
POTUS does it and you should too
Please don't ask me how my son died


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