There had been a steady decline. The first time we met, he was sitting in a chair with a walker nearby. Then the chair was a wheelchair. Next, sitting up in bed. Now, he lies back even with his eyes closed.

He said, “I wonder where the deer have gone.”

“Deer?”

“Yes.” He explained, “I used to see deer from my window here.”

As of this moment, I do not know if that was our last conversation. Maybe we will talk more this week about one thing or another. I have quiet in the not-knowing, and that is enough.

The notion of agreement implies plurality: there is an inherent “more than just me” to the word because, on my own, my perspective of the world is my default setting for what is real. I don’t have to agree with myself, it is my baseline of relating to the world. However, in any interaction with someone else, there are points where we have very similar perspectives and also those where we diverge. This is not the same as having a different opinion (I think vanilla ice cream = awesome, and for you maybe raspberry sorbet = awesome), but as a more fundamental sense of what is occurring. In spending significant time with persons who are in hospice care, I have reflected a lot on what it means to be in a shared space across more than one experience of reality.

All of the people I meet in the course of volunteering have one or both of the following characteristics:

• altered sensory perception such as pronounced hearing loss, vision impairment, motor changes that impact how easily/often they move, changed proprioceptive awareness (processing their body in space), and/or
• diagnoses of dementia (often exacerbated by the challenges with sensory perception and routines of life in a facility).

These cannot be separated from one another. Each informs the other.

Example: Once while visiting a Friend, I noticed she had received mail. I opened the envelope and handed it to her. She responded, “I need my focusers.” I found her reading glasses and she accurately read the letter out loud, commenting with comprehension on things her friend had written but stopped mid-sentence when it reached the edge of the card. I turned it over for her and she continued reading. My reality and hers included knowledge of reading glasses, literacy, and social conventions in written correspondence. We both spoke in complete, grammatically intact sentences. Her reality included a creative word use and did not recall that the back of the card finished the sentence. Neither of those are a problem for me because my reality has opportunities to be flexible as a benefit of being a volunteer.

I talk about these kinds of experiences with my family intentionally and often. It is my hope that the stigma around dementia can be eased by being open about it. For that matter, I want to expand the sense of what is normal to include being with people where they are: whole.

The “Story of the Focusers” has represented a type of the interactions I regularly have. There are multiple points of agreement in a shared reality; what differences there are need not stress my version.

I have another Friend who has an insatiable drive to move, primarily to stand and walk, which is in dire contradiction to how unstable she is on her feet. I thought I had figured out a resolution by walking alongside her wheelchair, pushing it with my right hand while holding under her left hand with my left hand. She spoke in phrases that I would sometimes repeat (“your mother’s garden?”), but it didn’t seem to matter so much that there was a back-and-forth between us. When I sang, “Take me out to the ball game” she interrupted in the middle to say, “I like that.” It was a nice visit.

The next week, she’d had an extremely serious fall resulting in significant swelling and bruising on her face and hands. She was talking very quietly primarily to herself (in a way consistent with other visits), but occasionally turning her head as though she were directing what she said to someone not present to me. Even with one eye completely swollen shut, she kept reaching beyond the balance of her chair and leaning to shift around me sitting in front of her. I was amazed at her persistence and creativity. It was clear that she knew I was there insofar as I was an obstacle to her primary goal of getting up and that she was determined to solve that problem. In almost every other observable way, we held completely separate spheres of experience.

Last week, she was considerably healed from her injuries. There was a gardening magazine in front of her at the table and sometimes she turned the pages (left to right), and even directly responded to things I said. I posed, “Did your mother’s garden have flowers?” She looked at me and said, “No.” So I asked if it was vegetables, like carrots and tomatoes, and she nodded and repeated, “carrots and tomatoes”. Does that mean that there were more points of agreement in a reality we shared together? Perhaps. It honestly does not matter. I look forward to visiting with her next week, and we’ll take it from there.

End blip.

When our twins were born, my mom came to stay with us to help. That’s when my spouse and I knew with certainty that something unusual was happening with her thinking — her memory, sense of the world, and problem solving were all unmistakably strange.

We couldn’t seem to get her to stop drinking my husband’s coffee, even though he prepared his entirely differently (black, no cream or sugar) and he bought them both different colored mugs with labels written on them (“Grandma” and “Daddy”). She made 3 packets of Kool-aid all at once, using a large bowl for one because we didn’t own that many pitchers. Her explanation was, “I didn’t know what flavor you wanted.” There were other, non-beverage examples, but the point is essentially: I didn’t understand her thinking, and I didn’t know how to relate to it meaningfully.

As years went by, talking with her consistently featured many repetitions of stories, some of which were definitely not true. As the twins got older, I worried they would be confused by these patterns and that the other adults were not reacting. I reached out to a friend who worked at an elder facility. He encouraged me to use the word “dementia” and to be matter-of-fact with the kids: she did not remember she was asking the same questions again or repeating stories, and there was no point to calling that out because she would not remember that either.

At the time my mom passed away, she still knew my Dad, loved talking with him about their favorite stories (which he also never tired of), and they were a good team together. He gradually managed almost all of the tasks of living, including helping her shower and dress. These days I spend time with folks who have dementia to a much more significant degree than she ever did, and I am in a different space of understanding than I was then.

About two weeks ago, I went to visit one of the folks I volunteer with and she was in a truly lovely, sweet mood. She was holding a baby doll, a little larger than a newborn, cuddled to her shoulder. She tucked her head to it and cooed, patted its back. She was so happy to be taking care of this baby, giving snuggles and comfort. I sat next to her and we talked in a sense. There were lucid/attached to shared reality moments within our exchanges but mostly I sat near her and enjoyed her company.

Talking with my non-binary teen about it later, they immediately cued into the energy of the moment as being the only important part. They helped me find the image of a grown-up figure holding a child-sized figure (at the top of this page) and we talked about how strange it is that much of clipart for elderly women feature someone grey-haired with a bun. There are photographs of seniors holding baby dolls online — I have since learned this is a known therapeutic activity — but my teen and I were concerned that those photographed may not have been able to truly give consent.

On Friday, I had a first meeting with someone new. She was chatty with a nervous energy in her hands, twisting her clothes. I handed her a set of fidgets and that gave us something shared to do, to look at, to turn over, to sort (with no rule, no right/wrong). She speaks in tumbled words and phrases and I respond according to tone: ‘Oh, I see’ works with both enthusiasm and empathy.

At the end of my visit I said, “I am so glad I got to spend time with you.” She looked up and said, “thank you.” Telling this to my teen son later, I said there was no way for me to know if that was just a random alignment of what she said with the moment or if the social cues are so practiced as to remain intact/attached. He said, “yeah, that makes sense but it doesn’t matter. It was real.”

I wanted to share these stories from my mom to these other people’s moms in part to revisit the experience of not understanding what was happening, and how to relate to it. I am glad now to spend time talking about these relationships, finding the energy of the moment and being real together.

End blip.

When I came into the facility, I saw an elderly man exposed from the behind using the raised feet of recliner chairs (that had occupants) to make his way across the room. There weren’t staff around which was unusual at this place and time of day. I went up to him and put my left arm across his shoulder and my right arm under his. I said, “Where are you headed?” He said, “bathroom.” About then a person in scrubs came up as well and snagged a community wheelchair. When my companion sat down into the seat, he got a look on his face that I suspected was the realization that his pajamas had fallen — his bare skin against the vinyl seat — but there wasn’t time to register that indignity because another one was coming if we didn’t get to the bathroom quickly enough. We did though.

As soon as he was set and the door closed, I looked up to see a woman advancing with her walker and waving in the manner attempting to get attention. I don’t know where that person in scrubs had gone. I approached and she said, “A woman has come into my room, laid on my bed and now she’s asleep. Can you help?” I said, “I can try.” She replied, “I can’t hear very well.” As I entered her room she called after me, “Please be gentle with her. I know she is tender-hearted.“

It was a nice space, sweetly decorated and inviting in style. The ‘intruder’ was sitting up just as I walked over and pulled a small blanket across a chair in the corner.

She said, “I put this here for you. Do you like it?” I said, “I do. Let’s sit together.”

She said, “here?” I responded, “Let’s find a couch. Do you like baseball?”

She said, “yes.” I sang, “Take me out to the ballgame. Take me out to the crowd…” I put my left arm around her back and my right hand under hers. She smiled and sang with me. At the nearest couch, we sat down. I sang whatever songs I could think of for a little while.

The thing is: I know all of these people some.

The man had been one of my friends in volunteering with Hospice, given a ‘live discharge’ because he was doing so well. He and his family had felt like there was a little too much hovering. That level of support may have been why he had improved though.

I had met the woman with her walker on a previous visit, new to the facility and a little shy about hanging out in the community rooms so she did not know many of her neighbors names. She truly cannot hear well so introductions may not have gone very far.

The second woman I have had interactions with previously; she had been unsettled by the strangeness of a lotus painting, but enjoyed meadow daisies. Watching her on this day, it felt like there had been a decline since I’d spoken with her last. Going into others’ rooms certainly could not be allowed (for a variety of reasons), and I felt a steeper fall in her experience of life may be forthcoming.

The first woman brought an afghan blanket and I put on my voice amplifier so that she could hear me more easily. She said I was so kind. I did not feel kind.

I felt that this is how it is sometimes. Sometimes we make it to the bathroom humanity intact and with help, other times we don’t. Sometimes we find one another in ways small and profound. Sometimes there are smiles and songs, sometimes sad.

Mostly it’s all of it…connected, some.

End blip.