Health and Wellness

Dementia Caregiving – A Family Affair by Kathy Flora

A senior African-American man in his 60s sitting at home with adult daughter, in her 30s at the dining room table, drinking coffee. The woman is showing her father something on her mobile phone and they are laughing.

Originally in posted November 2018 and updated on December 28, 2021

When the phone rang yesterday, I would never have imagined that the call would evolve like it did. Calling was my uncle’s niece on the other side of the family, patriarch of our sprawling family tree, the one who always cared for others without fanfare or complaint. He would pay tuition, throw a birthday party, contribute to any cause, help our unemployed family members find jobs. There is no end to the evidence of the visible love and support he and his wife, our aunt provided over the years.

Now, his niece reached out to me to enlist me in an intervention. (I am from his beloved wife’s side of the family, a wonderful woman who died a year and a half ago, leaving him to manage on his own.) His nieces stepped into the gap that our aunt left, a gap that was growing wider and wider each month. He was now showing stark signs of dementia himself.

Suddenly there was legitimate concern about his driving, about his travel, and about his decision-making ability, about his desire to move in with a female friend, far more incapacitated than he is. Dear man, still wanted to care for others, no matter how confused he has become. Yes, as his niece conveyed, it was way past time to have “the talk.”

So, this Sunday, under the ruse of taking him and his new lady friend out to lunch, several of us will convene at his snowbird condo on the Gulf in Florida to discuss the best way to maintain as much of his independence and decision-making capacity as possible, while securing his future care at the inevitable progression of the disease.

At least for now, he is still able to understand the reasons why he must make some decisions about his future care. Thankfully, he has indicated that he is willing to consider taking steps, “in a year or so”, to put in place the supports he will need. But, with the rapid advance of his evident decline, “a year or so” may be too late. That’s what we need to impress upon him this Sunday.

I ache for him, that loving, generous, kind and caring man, who lost the love of his life not long ago. I ache for him because he says that all he really wants is to join her in paradise. Yet, dying is not as easy as wishing it so. We don’t usually get to choose how and when we go. What he may be facing as his genetically-related disease progresses is years of decline, in which his healthy body continues to thrive, and his heart continue to beat, while his mind drifts into a world unknown.

I ache for all who knew him as the dynamic executive, the loyal friend, and the most powerful model of goodness and love I have even known. I ache, yet my husband and I will accept the privilege before us. We will sit down on Sunday, with family from the other side who also love him dearly, and we will try our best to give back to him a portion of the love he poured out on all of us throughout our years. We will have “that talk”… that toughest of talks, really, that insists that he can no longer drive, no longer make his own decisions, and cannot live alone anymore.

God bless my uncle. God bless you and I am so very sorry. We’ll be here for you, and we will walk with you, all the way home.

Have you encountered circumstances with a loved one that requires you to have “the talk?”  If so, how did you handle it?  What was the outcome? What advice would you give to others facing the same thing with their parents or other loved ones?

Kathy Flora is a Nationally Certified Career Counselor and Master Career Coach. She began this work at Purdue University in College Placement. Through successive job changes, she’s worked as a consultant, a business executive, organization development and job search trainer, an elected State Representative in New Hampshire, an HR representative at the Congressional Research Service of the Library of Congress, and finally as a leadership program manager in an Intelligence Community agency in the federal service in Washington D. C. and Tampa, Florida.

She is a mom, a grandma, a daughter, a sister, a friend and Jim’s loving wife, a political junkie, public speaker, novice hiker, and an avid cyclist. She and Jim live in Bradenton, FL, with an inspiring view of the sunsets over the marsh along the Manatee River in a neighborhood with plenty of walking trails and biking paths. Those paths are where she finds her bliss nearly every morning before starting the rest of her day.

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