Shared story: We promised she would always know she was loved

Today’s shared story is by Kathy Girton Pfaff, a licensed professional counselor who lived and did mission work for 13 years in the West Indies. She continues that work at a distance today, from her home in Hamilton, Ohio.

In a family full of people in ministry, just prior to the passing of my father and spouse, we learned our mother, Marge Whitacre had early signs of dementia, the umbrella that includes Alzheimer’s. We promised our dad we would take care of our mom and be sure she knew she was loved.

Kathy’s mom and dad, August 26, 2011

Out of six kids we each did as we were able, though most were hours away. Later, when Mom was at her worst, the youngest lived within 10 miles and faced the majority of challenges and disappointments with the fabulous support of her husband, a minister. He was tremendous to our mom, and we are still expressing our gratitude for making it possible for each of us to continue our careers and ministries.

Having a more flexible schedule than most siblings and as a widow without as many family obligations, I tried to visit regularly and fill in most times my sister was ill, had other obligations, or just got a much-needed break. The care of my sister and her husband was a huge blessing to Mom and the siblings.

Independent if possible

After our dad’s funeral, we all agreed to support Mom’s desire to remain independent as long as possible, since she was in the very early stages of dementia and her church family was close and able to share the challenges she would face. They helped my sister stay aware until the day we decided it was time to get Mom even closer to family, yet still independent.

Mom moved to a smaller apartment very close to my brother-in-law’s church. She was still able to take walks, get to church, and have friends and family close by. Mom was somewhat aware she couldn’t—or shouldn’t—cook much, and my sister or brother-in-law would nearly every day drop off leftovers and check on Mom.

But it was getting more difficult. We discovered she had gotten lost walking the three blocks from the post office to her apartment. My sister and brother-in-law learned there had been other incidents she either forgot to share or deliberately hid from them.

There had been incidents she either forgot to share or deliberately hid from them.

Mom managed her life generally for the first several years of her diagnosis; yet my sister, who is a certified dementia practitioner and geriatric social worker, monitored and navigated her progress the entire time (almost 10 years; Marge died November 20, 2020). Eventually, there was no choice but for Mom to move to an assisted living care facility

Difficult changes

As Mom continued to change, she made false accusations against everyone, including my sister and brother-in-law. She constantly lost expensive medical aids (glasses, hearing aids, etc.) and often hid the TV remote.

Later, when she had moved to a care facility, she slapped the hand of a woman who was also a dementia sufferer. Mom accused the woman of trying to injure her.

Kathy posed with her mom at the care facility before the Covid shut-down.

The siblings all trusted my sister and husband, but what they had to experience was difficult, hurtful, and repeatedly emotionally wounding. While on one hand, Mom complained about my brother-in-law controlling her money (to keep her from giving it all away or misplacing it; he gave her cash for haircuts and other requests), she said he was her favorite. He saw her most and listened to her confused conversations when he’d drop off supplies and visit briefly while heading to/from hospital calls.

Decisions

In the course of it all, we made several decisions:

1) The biggest decision was to move Mom into assisted living while she still had some coping skills to help her adjust.

2) We gave ourselves permission to laugh at incidents but not at Mom. If we didn’t laugh, we’d cry.

3) Mom loved music. We sang with Mom as often as we could, because her faith was very important to her and she never lost her ability to sing and harmonize beautifully. Her Bible reading and prayer never stopped.

4) She was surrounded by family photos and never missed an opportunity to boast about us!

5) We hoped she would never need to be moved from her last residence to cause her more confusion.

6) We included Mom in as many holidays as possible, even when we took the holiday to her as a family.

7) Though it was very painful to see this sweet, kind, quiet, loving, godly woman flip her personality, we kept reminding ourselves, despite the dementia she was still our mama who deserved our love, respect, time, and understanding.

Lessons

And we learned several lessons I’m eager to share with others on this “unchosen journey.”

I think the most important is to love them while we can. Ask questions and learn about their childhood years, their extended family, and what memories they have. (Let them share, whether or not they are 100 percent accurate.) Help them still know they are important to us. We need to express our grief with a friend or family to cope and not give up. Love them abundantly as long as we can.

A montage of poses with Marge and each of her children

Caregivers need a break. This journey is painful but should not be taken alone. Lean on others as much as possible. If someone volunteers to sit and visit with the loved one, take that time to go for a walk, take a nap, go to a comedy movie, go to church, or out to lunch with friends. Help your mind get a break from the sadness; remember God has still given you life, memories, and purpose.

Don't stop living. Eventually, this journey will end and you will need to re-enter life as you knew it prior to the unchosen journey.

Mom was one of six siblings also. Out of the six, four were diagnosed with some form of dementia. All have now passed, but we are constantly aware dementia can go through generations. We pray the Lord will continue to provide our needs and protect our health as we age. No matter what, we will always support one another.