Ambiguous loss: Losing a loved one while they're still here

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A local nonprofit is helping families dealing with Alzheimer's find strength. (Source: 3TV/CBS 5) A local nonprofit is helping families dealing with Alzheimer's find strength. (Source: 3TV/CBS 5)
Losing your loved one while they're still here is a common heartache for families dealing with Alzheimer's. (Source: 3TV/CBS 5) Losing your loved one while they're still here is a common heartache for families dealing with Alzheimer's. (Source: 3TV/CBS 5)
Ann Wheat runs caregiver services for the Phoenix nonprofit Duet: Partners in Health & Aging. (Source: 3TV/CBS 5) Ann Wheat runs caregiver services for the Phoenix nonprofit Duet: Partners in Health & Aging. (Source: 3TV/CBS 5)
PHOENIX (3TV) -

Losing your loved one while they're still here is a common heartache for families dealing with Alzheimer's. 

Now, a local nonprofit is helping them and other caregivers find strength in the journey that gets harder by the day. 

Dr. Pauline Boss coined the term "ambiguous loss" to describe the grief of having a loved one diagnosed with dementia or Alzheimer's.

"Ambiguous loss is the hardest kind of loss there is, the most stressful because there's no possibility of closure," said Boss. 

She studied families of fallen soldiers and people who lost their loved ones in the 9/11 terrorist attacks. She said, just as many of those families never got the closure of recovering physical remains to say a proper goodbye, there's an equally gripping psychological loss with dementia and Alzheimer's patients.

"The person is present in your home, but their mind is gone," Boss explained. 

Ann Wheat runs caregiver services for the Phoenix nonprofit Duet: Partners in Health & Aging.

"Caregivers go through ongoing losses, ongoing grief. We have to help them! We cannot leave these folks in isolation unsupported," Wheat said. 

In addition to bringing in Dr. Boss for workshops and filming a special educational series with caregivers, Duet just got a $460,000 grant from the Virginia G. Piper Charitable Trust to grow a special mentorship program to reverse the odds against caregivers, who are statistically 63 percent more at risk of dying, than others their age, because they rarely pay close attention to their own needs. 

"It's like on the airplane where they say, 'Put the oxygen mask on you first before the person you're taking care of,'" Boss explained. 

She is encouraging caregivers to embrace the idea that it's OK to plan a future without their loved one and important for them to find other interests to distract them from the heartache of their 24/7 caregiving. 

Retired valley attorney Ron Carmichael doesn't mind getting personal to talk about how the dreams of his golden years changed after the love of his life and wife of 55 years, Pat, was diagnosed with Alzheimer's. 

"There are moments of depression. There are moments of regrets but if you live in those moments, you're wasting the time you have left," Carmichael said.

And he's not alone. 

Dottie Neuman is in the same boat, acting as caregiver for her husband. She agrees and said there's just something empowering about connecting with other caregivers.

"It's vital, absolutely vital," Neuman said.  

"You learn you're not alone. Your feelings are not just yours and that other people feel the same way. That it's OK to be angry sometimes. It's OK to be tearful sometimes," Neuman said. 

"Closure is really a myth," Boss said. 

"You give up on perfection and learn to live with the 'good enough,'" Boss said.

"I have what I call 'guardian angels,' who help us a lot," Carmichael said. 

He's learned to lean on his circle of friends who help him get a break when he needs it, so he can also be a husband, not just a caregiver to his wife. 

The Duet series with Dr. Boss will be used in new caregiver to caregiver training and mentoring this spring. Click here to learn more. 

And click here for a link to the rest of the stories in our Life with Alzheimer's series.

You can also click here for the Carmichael's daughter's latest blog about "Saying goodbye while holding on.

Copyright 2017 KPHO/KTVK (KPHO Broadcasting Corporation). All rights reserved.


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Nicole CritesNicole Crites anchors "Good Evening Arizona" weeknights 4 p.m.-6:30 p.m. on 3TV with Brandon Lee.

Click to learn more about Nicole.

Nicole Crites

The two- time Emmy award winner has been telling stories about Valley newsmakers and trends for more than a decade. Before joining 3TV's "Good Evening Arizona" team, she was the morning news anchor at KPHO-TV in Phoenix.

Nicole loves meeting new people every day and finding ways to bring context to news unfolding in our community and our world.

A wife and mother of two little ones, Nicole is always exploring Arizona to uncover exciting adventures to share. She grew up in a big family, one of six kids in Tucson.

She graduated from the University of Arizona. Work and early internships took her from Manhattan to Spokane, WA, back to Arizona, where she and her high school sweetheart settled to start a family.

Nicole loves to read and keep busy with community service and crafts, like quilting baby blankets, something her mom taught her in elementary school.  

Nicole's passion for storytelling and helping others is why she got into journalism.

She won an Emmy for her field anchoring of the deadly Tucson shooting and assassination attempt of then-Congresswoman Gabrielle Giffords and another for her KPHO "Keeping the Promise" series on military struggles and success profiles.

She is an active board member for the nonprofit, Military Assistance Mission, supporting our Arizona military, their families and wounded warriors.

She believes everyone has a story and says the most interesting people she has interviewed weren't the actors or politicians who've been guests on the show over the years, but the "ordinary" people you'd never guess have overcome extreme odds and are doing extraordinary things every day

If you have a story you’d like to share with Nicole, click here to email her.

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