Hands of elderly person holding a booklet on Washing Up

ADLs — Washing Up

Sometimes folks I visit are known to avoid and/or have active resistance to activities of daily living (ADLs) for hygiene care.   There are undoubtedly many overlapping factors to this:

  • Related to sensory difficulties and changes to their thinking, they may not understand what is happening, or why it is important.
  • Related to sensory difficulties and changes to their memory, they may not recognize/remember who is touching them,
  • Related to communication difficulties, they may not be able to clearly convey preferences such as if the water is too hot or too cold.
  • Related to chronic staff shortages and turnover in this industry, the persons providing hygiene care may have an extremely high workload which requires them to move quickly.
  • Related to previous negative (and often intense) experiences, the persons providing hygiene care may be trying to be efficient with the intention of shortening the distress.
  • For safety reasons, persons providing hygiene care may be trying to move as fast as they can to contain biologically hazardous waste and reduce risk of infections.

As a volunteer, I am not trained or authorized in providing care for toileting, taking care of teeth/dentures, responding to wounds, or anything related to medications.  But I attempt to support a positive atmosphere by explaining what is happening if I am present during a nurse/aide visit (e.g., “This pudding has your medicine.  It helps for pain.”), and by providing materials that I hope promote understanding and calm.

I compiled a ‘series’ of four booklets all themed around “Washing Up” and which have the exact same text.  The images in the first one all feature ducks, the second all have dogs, the third is all cars/vehicles (with people more visible in most images), and only the last one uses images of elderly persons.  My thinking was that having multiple versions without people could reinforce the concepts in a gentle and non-threatening way.  I use these during my visits completely unrelated to their hygiene care schedule in the hope that it helps build their understanding of these tasks and increases their feeling comfortable.  Often I leave copies for family and staff to consider at other times and also have example language they could use when providing hygiene care.

Each book has the following text:

Soap is used for washing up.  Water rinses off bubbles.  Dry off with a soft towel.  Hair can be combed.  Special brushes are used to reach important parts.  Washing up is important.

End blip (for now).

A bouquet of a variety of spoons.

My Spoonie Selfie

For those unfamiliar, “Spoonie” is a tangible metaphor for those ailments which may not be ‘visible’ but which absolutely impact/define life. The idea was first introduced by a woman who has Lupus, and she used a quantity of spoons to represent energy throughout the day.

To a friend who did not have Lupus, getting up, picking out an outfit, taking a shower, getting dressed, doing hair and make up, eating breakfast and heading to work might just be one spoons worth of energy titled “starting the day.”

For a person with Lupus or motor-coordination differences, depression/anxiety/apathy, or any number of other challenges, just getting out of bed might ‘cost’ an entire spoon. With 11 left to get through the entire rest of the day.

Last night I realized that the story is pretty easy to imagine, but incomplete. Not all of my spoons are equivalent. Some situations I have superpower spoons that get me through: I cope with medical procedures and manage my emotions and energy very well. I do not cope with uncertainty or self-doubt well, and those spoons can disappear into a a very sad fog.

Last night, I was disappointed in myself for being tired, and remembered times when the kids were little that I could pull from a well of will power to get through. Then it struck me: when the kids were little, I was *younger*, and a lot had not happened yet that contributes to my collection of available spoon cache now.

I forgave myself for being tired. I forgave myself for wishing I had a different set of spoons/circumstances. It’s okay that sometimes I am in a sad fog about that: It is sad, and it is foggy.

I was reminded, too, that I have skills in readjustment. So, right here, right now: I surrender to the illusion of control. My spoons are mine. My body, my life, my feelings are mine.

End blip.

Last conversations (maybe).

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.

Recipe for Our Garden

Ingredients:

  • nurture memories of your mother’s rose garden at the side of the house (when you out grew the swing set), of standing barefoot in the dirt eating warm and dusty cherry tomatoes, of visiting botanical gardens, of discovering sculpture gardens, of walks in the neighborhoods to admire what others are growing (the neighbor who recreates a meadow filled with more flowers than I can count, the one who artfully fills every space with vegetables in raised beds, the one who welcomes pollinators),
  • share page-turning in catalogs for seeds or landscaping and say “ooh…” or “wow!” at the different colors or styles or seasonal arrangements,
  • hear people who know “Jean” well mention that, before the ALS, her strong knowledge and skills in plant care would’ve found her in the yard most of these sunny days of late,
  • read Todd May passage about practice in ancient China of friends from childhood writing to one another over the long years as working adults (when they lived apart) to collaboratively imagine the garden they would one day come together to create and take care of in retirement.

Instructions

  1. Prepare mental model of conversation method: 3 options spoken as a list, then repeat with pauses after each one to monitor for response. Note: Watch her eye gaze for indications that short-term memory has faded and a repetition may be warranted.
  2. Practice consistently with simple tasks: “Do you want to keep watching t.v., listen to music, or something else? Watch t.v. [pause], listen to music [pause], something else [pause].” It becomes a structure I can think in and she knows to anticipate about me.
  3. Talk about the birds at the bird-feeder together. It’s present, so can be referenced directly. Be open about when I did not understand. Laugh together when we are both startled by them abruptly flying off and then their gradual return as they realize it was just a noise. Joke about how flighty birds can be.
  4. Describe the flowers in my yard that I do not remember the name of. Listen and watch carefully. Brown-eyed Susans. Recognize that she is right.
  5. Tell the story about friends designing a garden together and invite what kind of garden we could design together.

“Should we have many flowers everywhere, a few flowers that we can focus on, or something else? Many flowers [pause], a few [pause], something else [pause].” Many flowers.

“Water is nice. Should we add a fountain, a fish pond, or something else? A fountain [pause], a fish pond [pause], something else [pause].” A pond.

“Will there be vegetables in our garden? Tomatoes [pause], carrots [pause], something else?” Maybe.

6. Realize and say that, so far, she is doing all of the actual gardening — we’ve already established that I don’t know much about plant care. “I’m not sure I am contributing. I’m happy to be beside you and learn but I don’t know what I can do for us. Maybe I can pick out the hats we wear so we do not get sunburn.” She smiles.

7. Realize and say that in an imaginary garden, there doesn’t have to be sunburn. We laugh. “Since we can do whatever we want, what else are we going to get rid of. I vote no mosquitos.”

And no bees.

The thing is, me, on my own: I am okay with bees. I am not allergic — I don’t recall ever having been stung. I enjoy their flight and dance, I very much appreciate what they do for the flowers. But this isn’t about me.

This is our garden.

End blip.

Black kitten playing with shoelace

Movement memory.

While volunteering at a local animal shelter, my teen and I watched a kitten relate to my shoelace or a rolling plastic ball with a playfulness that had elements of hunting to it (the crouching approach, a pounce, batting it with a paw), but at no point did it ever try to eat these toys. Maybe it had tried at some prior point and learned that these items were not edible. We also realized that we have built up enough experiences with cats that we recognized this kitten’s movement as indicators that it felt safe and we were safe in its company.

I have written before about my interactions with people who have dementia and the varied ways there are intact connections of shared reality compared to situations where we are not as aligned. Two recent experiences raised my awareness of the role of movement and how it may be characterized.

One of the Friends I have known the longest has had a further decline in her hearing. Even using a personal amplifier, she does not register or understand what is spoken to her. Writing my part of our conversations on my phone with the Notes app remains a highly successful way for us to interact. Last week she had just woken up when I walked in, so was more disoriented than is typical. It was only as I was pulling my chair up to be near her head, as I always do, that she suddenly brightened: “I recognize you! You come and sit right there, and you hold my hand.” It was my movement that stirred her memory. It gave her a means of knowing me and the kinds of things we do together.

At the beginning of this week, I went to meet someone for the first time. I had been told she’d had a stroke which impacted her thinking and memory. She was seated somewhat slumped in a wheelchair in the community room with a very loud t.v. nearby. I knelt on one knee at the front of her chair in the hope that she would not have to strain to see or hear me and introduced myself with my badge. She responded, “What church do you go to?” I pointed to the spot on my badge that identifies the hospice group I volunteer with and said, “I’m actually not here from a church, I’m a volunteer.” Her spouse interjected with the name of their church, so I asked if she had a favorite scripture or hymn she would want to hear. Instead she said, “I am not interested in what you have to say. You can go now.

Certainly anyone can decline to have a volunteer visit for any reason or no reason. I take no offense.

I only bring it up in reflection: I wonder if my movement in kneeling the way I did stirred her memory. Specifically, if what I did too closely resembled a stance she has remembered over her experiences as being unwelcome.

I’ve heard the expression “muscle memory” (that’s the means by which I am typing even now), but these experiences seemed more related to a memory of movement — even in persons who themselves are not moving much.

End blip.

Considering agreement of shared reality.

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.

An incomplete list of factors which can influence each of our experience of reality.

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.

Animation my son made for me which transforms an image
of a pair of glasses into separate, abstract spheres.

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.

Line drawing characterization of an adult figure holding a child-like figure

Conversations with Dementia

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.

The view from my front yard (L) of fractal trees covered with ice on a cloudy day. The view from my back yard (R) of icy trees illuminated by sunshine. Both have an evocative complexity and many more layers than can be reconciled.

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.

Brightly colored fidgets ‘sorted’ into a box and its lid.

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.

A dip in the road.

For want of a functioning kidney, my immune system is suppressed. In the absence of an intact immune system, I am prone to infections. Having more than one infection in a short amount of time (or the same infection persists beyond an initial treatment), and more than one antibiotic is used, my gut biome developed Clostridium difficile Toxin B gene, and Stl c-diff Toxin A&B — commonly known as “c-diff.”

I’ve heard this diagnosis applied in my general vicinity before (in 2009 and 2018), so it didn’t ricochet off my mind as unimaginable. That phenomenon does happen sometimes — having no prior knowledge of something makes it harder to reconcile — just not this time. What was new was every single medical person I spoke to asked if I’d had it before.

I’m pretty sure that’s code for: “If this happens once, it is more likely to happen again.

And: “If you have been through this symptom profile, you know what is happening.

Recognizing and deciphering unusual language and codes is part of the experience of illness, not unique to chronic or life-impacting ones. Who remembers the first time they fully connected all of the terms and slang of throwing up with the act and result of vomiting? That labeling probably is not recognized — but it all becomes part of the experience known and understood in the mind-body.

What would I do differently? None of it. The functioning kidney, suppressed immune system, treating adverse conditions as they come (even with risks) = steps on the path adjacent to being with my loved ones. I added this experience to the medical history I keep in my purse. I made other revisions, too.

A table of my relationship to pain/worry on a 0 to 10 scale which defines increments of intensity (where 0 = None, and 10 = Untenable), fear (ranges from “I am not afraid” to “This is horrifying”), quality of life (as “No impact or rare” [on QOL] to “Defines” [QOL]), and My Lived Experiences with examples of personal discomfort and/or duress.

I’ve spent a significant amount of time thinking, reading, and journaling about pain and concern, and how to communicate it to medical teams meaningfully. I debated some form of calibration that allowed people to have shared understanding — with the hope that although my “4” might be your “6,” knowing that about each other gives us opportunities to connect. I have realized that across a variety of metrics about pain/concern, I tend to put the most emphasis on a convergence of intensity, fear, and quality of life.

These already take into account my familiarity (I’m not as afraid or limited by physical and emotional pains I have experience with), plus I have a strong history of navigating medical systems ranging from the various jargons/codes to expectations typical in a variety of situations. These have given me some sense of how to gauge changes in my suffering over time — what may alleviate or aggravate, cycles, paying attention to trends over 24 hours, etc.

It’s not yet clear how prominently c-diff will feature in my life…it could resolve without further incident, it could happen again, it could be that I never return to the normal I knew before this diagnosis (or so I’ve been told). So I added this to my purse reference:

Line drawing approximation of how I relate to medical events impact on my overall health and likely trend to death. Adapted from Being Mortal (2014) by Dr. Atul Gawande.

This is the path I’m on (I think). I try to keep it as close as I can to the people I love, and I know that I am on my own journey which will have an end. I’m taking high potency probiotics to rebuild my digestive biome, I’m drinking viscous orange psyllium fiber supplement, I’ve changed my diet to be gentler on my system (no dairy, no fats, no raw fruits/veggies), and I’m awaiting a CT scan to check on my colon (although my liver also seems to be stressed). I’ll do all The Things that keep my path as close as I can to the people I love for as long as the time I have. It’s my answer to the question posed by Arthur Frank in Wounded Storyteller: “If I become ill again, or when I do, how will I find ways to avoid feeling that my life is diminished by illness and eventually dying?” That’s all part of our family history together, so it’s familiar and those steps are clear. In knowing that, I am less afraid of the parts that are uncertain. In any case, I am deeply grateful to be here now.

Also, “we take each day as it comes,” has become something of a mantra in our house during these times of SARS-Co-V2. Hopefully, we’re all learning together.

How I hope reflecting on the processes of my own life helps me to engage with others.

End blip.

Sometimes sad.

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.

Posted on November 3rd, 2021 by someone I do not know but whose story held significance.

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

End blip.