Many years ago, I was volunteering with hospice when I was asked to sit with a patient at the hospice house. I expected this to be similar to my previous experiences with patients who were staying at the hospice house at end-of-life. I expected to sit quietly with this woman, maybe listen to some music while she slept, and alert the staff if she seemed to need anything. As a graduate student, there was often time to get a bit of reading done.
I didn’t expect that a hospice staff member would meet me at the door with a tiny woman wearing a track suit carrying a notebook. The woman in the track suit, Donna, was all business.
The staff member introduced us, and Donna greeted me by saying in an enthusiastic voice, “Welcome aboard, Elaine. We have a lot of work to do.”
I was told that Donna had worked for the local chamber of commerce for decades. She had been diagnosed with frontotemporal dementia a while back, but her passion for her community had not waned. In fact, she saw the hospice house as a conference center, and she was planning a community conference.
The reason she needed a volunteer to stay with her and provide one-on-one attention was her habit of walking into other patients’ rooms and asking them to leave because she had previously reserved that particular room for the conference. Also, she saw several hospice staff members as her administrative assistants and was on their case for not pulling their weight.
“I’m glad you’re here,” she whispered to me. “The rest of them just sit at that desk.”
I made a comment about how hard it is to find good help.
For the next several weeks, I spent a couple hours a day with Donna. She seemed to see me as a colleague and respected my work in planning the conference, but there was no doubt that she was in charge.
I would list tasks in my notebook as she gave me direction:
Check in with caterer.
Report back on number of RSVPs.
Cash checks at First National Bank.
I’d go back over the tasks I was assigned with her later. Sometimes I would just say I checked them off the list, but usually I added some detail. I’d tell her that I was upset that the caterer wasn’t accommodating of vegetarian options or that I was frustrated that people never seemed to RSVP until the last possible moment. (I mean, you can’t just check off tasks if you’re planning an event. It’s always something, right?)
One day I asked if we should make some programs for the conference. She loved the idea. I grabbed my laptop and we went to work. She dictated as I typed. I learned that we were coordinating a conference for business leaders in the local area. The conference would last from 8 am to 5 pm for a whole week. No wonder it was so much work to plan.
She listed off some speakers that would presenting at the conference. I don’t remember all of them, but she told me that the diver Greg Louganis would be speaking on the final afternoon. I asked if he would be talking about the time he hit his head on the diving board during the Olympics.
“Oh, yes,” she said. “It’s a great story.”
Of course, I knew I wouldn’t really get to listen to Greg Louganis speak, but I was still excited to add his name to the program.
I learned to divert her when she wanted to kick patients out of their rooms for the sake of the conference. I got creative. I’d tell her that we probably didn’t want to use that room because someone had notified me that the air conditioning was broken, or I’d tell her that I’d located a more spacious room (usually the lounge) down the hallway that would work much better. She’d thank me for being on top of things.
I knew this conference was fictional. I knew it would never happen. Nonetheless, I somehow I took pride in the “work” I was doing. I felt productive when I crossed a task off my list. When she told me I was doing a good job, I beamed with pride.
One morning I got a call that Donna would be going home from the hospice house and would no longer need my assistance with conference planning. I didn’t ask any questions, but I assumed that perhaps going home meant she was doing well.
In fact, it was the opposite. She was moving back home with her husband because her health was declining. She had rapidly become less mobile and her verbal abilities had declined substantially. Her husband had decided it was time for him to take time off work.
I never saw her again.
On the last day I spent time with her, I felt like the conference arrangements were wrapping up. She was telling me what I should wear the day of the event (a business suit) and making sure I could be there an hour early.
Donna died a month or so after she went home. The hospice staff relayed that her husband was so grateful for the care she received during her stay at the hospice house. I wish I had reached out to tell him how much fun I had planning the conference. For the next year, I would find pages of conference notes around my condo. I really missed my conference planning days.
Strangely, a part of me feels unfulfilled that we never made it to the conference. We put so much work into it.
6 thoughts on “Dementia and Conference Planning”
What a wonderful experience–for you and for Donna. I wish all of the staff and volunteers could so easily and seamlessly step into the reality of their dementia patients!!
I had to smile as I read this post–I too was a Hospice Volunteer. However, the majority of my time was spent in the office, and at the end before I had to leave to care for my father at his end of life, I worked in the intensive care wing, manning the telephone or helping care for the patients. I truly enjoyed my time there. When my father passed, I had to wait six months before returning to hospice volunteer work, and by that time my mother needed my help. It has always been a very positive experience in my life. I learned a lot about caring for people when they’re ill.
What a beautiful story. I really enjoy your writing style, Elaine. This is a wonderful example of how simple it can be to make someone feel engaged and purposeful. It sounds like you brightened up her final year considerably, what a gift you gave her! You really went the extra mile, and that probably made the difference between Donna feeling respected vs. just pandered to. It sounds like it was fun for you, too, and that’s something most caregivers have to learn; to just be in the moment and go with the flow.
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A beautiful story, and a perfect example of reducing stress and creating joy and happiness by stepping into someone else’s world. Thanks for sharing.
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Oh, I love this story Elaine. Being with the person in the moment. Your “love response” to her questions/directions gave her a quality of life that helped her through this last stage of her life.
I’ve had trouble leaving replies before, but finally figured out I needed to log in to WordPress, and then it lets me leave a comment.
Thanks so much for your blog. It has given me insight and understanding as I travel on this journey with my husband.
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