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Dad, a Death Sentence and the Planner Who Set Us Straight

Dad, a Death Sentence and the Planner Who Set Us Straight

by External Article | Feb 26, 2021 | Care Work Library, Caring for a Parent, Generation X, Long Term Caregiving, Occasional Caregiving, Planning | 0 comments

During my dad’s illness, I experienced firsthand what had, until then, just been book learning: Financial planners are often at their best when your life is at its worst. Almost immediately, my siblings and I found ourselves out of our depth on a number of levels....
The Ventilator: Life, Death And The Choices We Make At The End

The Ventilator: Life, Death And The Choices We Make At The End

by External Article | Nov 19, 2020 | Care Work Library, Caring for a Parent, Caring for a Romantic Partner, Death & Dying | 0 comments

For much of their lives together, Stephanie Rinka and her husband, John, had ongoing conversations about end-of-life issues. Stephanie was a nurse, and she cared for many people suffering from incurable illnesses and debilitating traumas. Stephanie treated her...
How my mother and I became Chinese propaganda

How my mother and I became Chinese propaganda

by External Article | Sep 12, 2020 | Care Work Library, Caring for a Parent, Housing, Long Term Caregiving, Working Family Caregivers | 0 comments

As A.L.S. gradually paralyzed her, while leaving her intellect intact, our years were filled with I.C.U. visits, emergency surgeries, stays in nursing homes, and wrenching conversations with strangers about the logistics of death. Because she was on a ventilator and...
Caring for the carers

Caring for the carers

by External Article | Aug 25, 2020 | Caring for a Romantic Partner, Finding Caregiver Support, Long Term Caregiving | 0 comments

Schulz and four colleagues reviewed the research on family caregiving for the disabled and ill elderly, outlining the enormous toll on caregivers and potential ways to help them. “Our health system has always been narrowly focused on the care recipient,” Schulz says....
Cold Day in January

Cold Day in January

by Guest Author | Jan 23, 2020 | Baby Boom Generation, Caring for a Romantic Partner, Death & Dying | 0 comments

This day came, and I went into the ALS Clinic on my own. The one time I did.  I went to spend a couple of hours being instructed on dealing with a feeding tube. The success of the feeding tube, and staying at home—the ultimate carrot—was dependent on my learning to...
Director Stacy Title Is Racing Against ALS to Make Her Final Movie

Director Stacy Title Is Racing Against ALS to Make Her Final Movie

by External Article | May 14, 2019 | 24/7 Caregiving, Care Work Library, Caring for a Romantic Partner, Generation X | 0 comments

There were times, he admitted, that it seemed as if “I could be a chimp or a robot, as long as I get the Towel back in there fast enough. I just want a Stacy who’s not so subsumed by sickness and anxiety that she can’t even consider what her husband is saying. Should...
Your most valuable possession

Your most valuable possession

by Abby Kass | Aug 25, 2018 | After Caregiving, Caring for a Romantic Partner, Finding Meaning, Grief | 0 comments

The release of Disney Pixar’s The Incredibles 2 seemed a perfect time to revisit an important quote by Mrs. Incredible/Helen Parr/Elastigirl from the original film: “Your identity is your most valuable possession. Protect it.” To me, that is one of the most valuable...
Devastated by ALS, trying to save others

Devastated by ALS, trying to save others

by External Article | Jun 13, 2018 | Care Work Library, Caring for a Romantic Partner, Generation X, Planning, Working Family Caregivers | 0 comments

“She is my rock,” Desikan types. She is also something of an organizational and logistical wizard. Desikan is 6-foot-1 and more than 230 pounds. Moving him from his bed or wheelchair is its own undertaking, and leaving the house is a daunting task. Their support team...
Battling ALS and the ravages of time

Battling ALS and the ravages of time

by Guest Author | Sep 19, 2017 | For Friends & Family | 0 comments

CHARLOTTE, NC, September 10, 2017 – There comes a point in dealing with ALS that you eventually resign yourself to the fact that you will never again be independent. It’s not so much a case of denial than it is the realization that someone will have to help you...
The Ventilator: Life, Death And The Choices We Make At The End

Summer Melt

by External Article | Jul 17, 2017 | Care Work Library, Finances, Long Term Caregiving, Millennial Generation | 0 comments

A high school student is all set to go to college in the fall…but he doesn’t show up for classes. What happened? Caregiving happened. Someone needs to take care of his dad, who has ALS. It’s easy to decide college can wait so his mom can go back to...
Have Courage and Be Kind

Have Courage and Be Kind

by Abby Kass | Oct 11, 2016 | 24/7 Caregiving, Baby Boom Generation, Caregiver Stories, Caring for a Romantic Partner, Grief, Long Term Caregiving | 0 comments

“Have courage and be kind” is one of those wonderfully memorable movie quotes to live by that is so simple yet so profound.  In the 2015 action version of the Disney film, Cinderella receives this advice from her dying mother. Have courage and be kind Click To Tweet...

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