Today I did my monthly stint at Care One, Moorestown, working with poetry and Alzheimer’s. When these sessions go well I find a deep satisfaction in seeing the residents stimulated and involved—I have recorded such experiences in poems like “Welcome Visitors,” the last poem in The Stolen From.
Unfortunately, there are days like today when the sessions do not go so well, and I thought it might be helpful to others working with this population for me to record some thoughts about the challenges of working with Alzheimers.
My four years experience has made it very clear to me that the disease progresses at startlingly different rates in different individuals. I do my Creative Writing workshops in the community that houses the least severely impaired residents, and a couple of the participants have been with me since the beginning, without any noticeable further deterioration in their faculties. I have a great relationship with these people and I know they enjoy the sessions.
However, sometimes, new residents arrive and it becomes clear after only a couple of months that they need to be moved to one of the communities which offers more support (and less stimulation.) As John Zeisel explains in his highly recommended book I’m Still Here: A New Philosophy of Alzheimer’s Care, before one can start to communicate in a meaningful and therapeutic way with an Alzheimer’s patient, they need to be soothed and calm. Therefore the circumstances in which the patient is housed need to be adjusted so that they are as soothing and calming as possible. Unfortunately, one upset individual creates an atmosphere of unrest that rapidly transmits itself to all present. Behaviors include generalized cries for help, verbal assaults which may be directed at everyone or at specific residents, “escape-seeking,” and invasion of personal space.
None of this is conducive to reading and discussing poetry, or using it to stimulate recollections and creativity.
Unfortunately, as was explained to me today (a session during which at least 3 community residents showed one of the above behaviors, leading to disruptive exchanges between them, staff, and other residents) the staff encounter resistance from relatives when they propose moving an individual to a more support-driven community—a form of denial which is completely at odds with that individual’s needs, not to mention those of others in the community.
As an outsider, I can’t do anything about that. I have developed my own acronym to ensure MY behavior is as consistent as possible with the outcomes we are all trying to achieve.
Challenges of Working with Alzheimers: PARSE
- Persevere: the participating residents feel that their experience is being disrupted and they are losing out if I pause because the noise level from non-participating residents, for example, makes it difficult to continue. So I simply adjust my own volume so I can be heard.
- Accept: if I myself start to become upset at the interruptions, that only adds to the general level of upset in the room. I try to look completely unfazed.
- Redirect: I say things like “Let’s get back to the poem now!” or to an individual “John, why don’t you sit down so we can keep talking about the ideas.”
- Smile: the smile is universal body language for “everything’s okay.” Regardless of how I’m feeling about what’s happening, I try to keep a reassuring smile in place at all times.
- Encourage: I encourage positive behaviors by always rewarding contributions: “Yes, that’s a great thought, Sarah! Let me write that down.” “Wow! You’re so good at coming up with rhymes, Josie! That will be a great one to use!”
Then I go home, write a blog entry, and pour a large glass of wine.