A Heartfelt Journey: Finding Connection and Joy in Respite Care

By: Marie Marley, PhD
Volunteer – Kansas City Hospice & Palliative Care

As I stepped into the Brendans’ home on a crisp Thursday morning, my heart was filled with a mix of anticipation and hope for my new respite care assignment. I had no idea that this assignment would not only challenge me in ways I never imagined, but also touch my heart deeply, becoming one of the most rewarding experiences I’d had as a Kansas City Hospice & Palliative Care volunteer. 

Learning More About FTD
After closing the door behind me, Dave told me his wife, Elizabeth, had frontotemporal dementia (FTD) – not Alzheimer’s disease. He also told me she didn’t hardly talk, and she had recently lost the ability to walk. I had never encountered a person with FTD before and naively thought it would be similar to Alzheimer’s. Little did I know how profoundly mistaken I was. 

Dave directed me to the living room where Elizabeth sat in a big geri chair. [NOTE: Geri chairs (or geriatric chairs) are large padded chairs with wheeled bases, and are designed to assist people with limited mobility.] She appeared to be in her 50s and was quite attractive. Her long brown hair coordinated nicely with her brown eyes. 

Watching Dave interact with Elizabeth, I quickly realized she comprehended everything said to her, and was fully aware of all that was going on around her. She just couldn’t speak. I wondered whether she was aware of her inability to speak – if she wanted to speak, tried to speak – and whether she suffered emotionally because of it. I fervently hoped she didn’t.

When I was ready to leave that day, Dave gave me a booklet to read about frontotemporal disorders, published by the National Institute on Aging. When I arrived home, I also Googled the difference between FTD and Alzheimer’s because I wanted to better understand Elizabeth’s condition. 

I learned that whereas Alzheimer’s usually strikes people between the ages of 65 and 90, FTD is most often diagnosed in people 45 to 65. Also, Alzheimer’s typically starts with memory problems, but people with FTD usually initially show behavioral changes and sometimes language and movement difficulties. I also learned that while people who have Alzheimer’s can live anywhere from three to 20 years after diagnosis, those who have FTD usually live only six to eight years after they’re diagnosed. 

At first it was challenging to sit for three hours beside a person with whom I couldn’t converse. It was also difficult to stay that length of time with someone who, with only one exception I personally witnessed, displayed little affect. (Apathy is one of the hallmark symptoms of FTD.) She doesn’t smile. She doesn’t frown. She doesn’t laugh. She just doesn’t show any emotion that’s discernible to me. Dave, however, is always able to read her mood. I want to learn to do that too.

The one time I did see Elizabeth show emotion was when her son was visiting with his wife and three children. When they were getting ready to leave, her son, his wife, and their two daughters told her they loved her and gave her a hug and a kiss on the cheek. The other child, a teenage boy, stayed behind and spent a good ten minutes telling her goodbye while Dave and I talked quietly in the dining room to give them some privacy. My heart swelled with emotion at the young man’s profound love for his grandmother. When I returned to the room, I saw that Elizabeth’s eyes were slightly misted over. I gave her a Kleenex. 

Finding Creative Ways to Communicate 
I soon learned ways to communicate with Elizabeth. She can say ‘yes’ or ‘no’ – ever so softly. At first, the two words sounded identical to me. But little by little I learned to distinguish between them. So now I can ask her “yes or no” questions and get an answer. Also, I can write options for activities on a small whiteboard and ask her which she wants to do. She points to her desired activity. I’m delighted at these incredible breakthroughs in communication! 

After a couple of weeks, we also began communicating with our eyes. She turns and looks in my eyes frequently, and when she does, I always smile and look back in her eyes. At times, it appears the corners of her mouth turn up ever so slightly. Other times, I feel like I’m just imagining it. But Elizabeth and I reach each other, and have special times together, using our eyes instead of words.

I engage with Elizabeth every minute I’m there. The main thing we do together is interact with the items on the tray that rests on the arms of her geri chair. She has a tiny xylophone with multiple mallets, a colorful drum Dave mounted on the tray, a steel drum, a plastic rain stick, and several other items. I hand them to her one by one and she plays with them. I could tell right away that Elizabeth is very intelligent because she quickly tires of each item and wants to switch to another. 

I’ve taken Elizabeth several small presents. Since she really likes things that make musical sounds, I took her a little plastic instrument shaped like a musical note that plays different pitches when you pinch the stem. She likes it and plays with it often. 

In addition to these musical items, I gave her a lifelike baby doll and a plastic container filled with colored liquid that falls down making a multitude of patterns when you turn it upside down. It reminds me of an old lava lamp. Although she isn’t drawn to the doll, she really likes the lava-like item. The day I took it, she played with it on and off for more than an hour. And she’s mesmerized if I hold it and repeatedly turn it upside down.

But the thing she loves most is a tube of cherry almond hand lotion I gave her. I tried to massage her hands with it, but by stiffening her fingers, she communicated to me that she didn’t want me to do it. So, I squeeze little bits of lotion on her hand, and she rubs it in herself. She never tires of doing this, and I can never figure out how she gets all of the lotion to be absorbed! 

Love will Conquer All 
I’m touched by how deeply in love Dave and Elizabeth are. It’s so obvious from the tiniest things he does for her, his complete commitment to her, and his general demeanor every instant he’s with her. Every gentle interaction says, “I love you.” He was beaming once when he told me the previous day was their 19th wedding anniversary, and they ordered in food from a special restaurant that evening.

Elizabeth is a true trooper. Although she appears depressed (her mild apathy is a common FTD symptom that’s often misdiagnosed as depression), she bravely engages, nearly nonstop, with the items on her tray. She never gives up or sits like a stone, as you might imagine a person with FTD could do. I deeply admire her resilience and determination. 

Elizabeth has found a special place in my heart. I eagerly anticipate each visit and learning even more ways to communicate with her – more ways to reach her soul, connect with her, find additional activities we can share and experience meaningful moments together. This indeed has turned out to be one of my most rewarding assignments in the six years I’ve been volunteering for Kansas City Hospice. As I’ve said many times, I receive so much more than I give.

Marie Marley has been a volunteer patient visitor for Kansas City Hospice & Palliative Care since 2019. In 2023 Ingram’s Magazine named her a Hero in Healthcare for her volunteer service. Marie is also the author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Visit her at ComeBackEarlyToday.com.