Because every disease, cause, and semi-notable soul seems to be singled out for special notice every day and month of the year, it’s easy to get cynical about the honorifics and get lulled into forgetting the import behind the honoring.
And so it was when the National Consumer Voice for Quality Long-Term Care, an advocacy group focused on consumer issues in long-term care facilities, decreed that October is Residents’ Rights Month. As part of that recognition, the Consumer Voice offers a downloadable packet of materials that includes related promotional materials, descriptions of activities, training tools and resources.
The group proclaims the month provides “an opportunity to focus on and celebrate awareness of dignity, respect and the rights of each resident.” And that might seem like a noble, but mostly empty, opportunity were it not for the component urging residents nationwide to submit essays, poems, artwork, drawings, and videos related to a yearly theme.
The 2017 Resident’s Voice Challenge has the empowering-sounding theme: “It’s All About Me: My Life, My Care, My Choices.” This year, 32 entries were submitted and are now posted on Consumer Voice’s website.
Several entries are posters with collages of pictures illustrating a facility’s activities schedules. A few are intricate — a word find game including both “positive thinking” and “grouch” in keeping with the “me” theme, a poem titled “Don’t Worry, We’re Happy” chanted over a Bobby McFerrin beat in the background.
Many of the offerings are brief videos in which the residents are openly coached by administration and staffers to extol their stellar care and caring, almost comically misdirecting the focus of the “It’s All About Me” theme.
But sometimes other truths won out in the words written and spoken. It’s there that the sugarcoating ends and the opportunity to look inside the people and the facilities and learn from them begins.
It’s A Big Deal
James, 39, is one of three residents in a Colorado care facility who talks about moving there in a video:
“You used to have a life where you took care of yourself all the time, and now you have to stop and rely on other people to help you. And it’s a big change,” he says. “Like when I first came here, it was really hard for me to come here and to deal with all this — and I felt like a lot of people were being short with me . . . when if they could have just understood that the day that I rolled over in bed and decided to come here was the day I basically gave up all my life. So it’s a big deal.”
Not Ready Yet
From an essay titled “My New Adventure” by a resident at an assisted living facility in Maryland:
I moved to an independent living apartment that my family found with a lot of amenities and things to do that I was not eager to go or do.
I knew that the time will come but I was not ready yet. The girls did all the work and I am grateful having them do all this work for me.
So they fix my new place with things that they thought I wanted.
The worst of all was giving my Maine coon cat, “Leader,” to an adoption agency to be adopted. I know they will not feed him tuna like I did or have him run outside in the yard anytime he wished. So I tried to cope with a lot of people older than me that are better adjusted than me because they lived here a long time.
When I was young we used to keep our grandparents at home where they die within the family.
Not How I Planned Life
From “Treading Water,” a haiku journal by a nursing home resident in West Virginia:
Roommate cold, not me!
Aide turns on heat, I suffer.
Can’t breathe by morning
It’s not personal:
Can’t believe my fights today,
I control nothing!
Struggle for balance:
Try then to please, and be pleased
Not how I planned life!
Let Us Feel Like We’re Humans
Several residents and a few staff members at a rehabilitation and nursing center in upstate New York put together a lengthy video about various aspects of living there.
One of the most poignant scenes is when residents are asked whether they have any advice to offer new staff at the center. They had quite a bit of it, including:
- Be upbeat. This is very important
- They should know that I need down time.
- If they don’t know something, ask. We try to help out the best we can.
- Well, nobody likes being here; we never asked for it. Just be friendly with everybody.
- They should know I’m a lot more independent than they think I am. I don’t like people doing things for me. I’m a very independent person, I always have been. Just so they know me.
- For me, because I can’t see, I like to have them say my name before they start talking to me, so I know they’re talking to me and not somebody else.
- I’d just like them to be interested in our interests; sometimes I am very happy, and sometimes I’m very sad.
- I think they should put themselves in the patient’s position and see what we’re feeling and what’s wrong with us to begin with — because half of them don’t know what’s wrong with you, what you can and what you can’t do. I think that’s the trouble: They don’t listen to the patients when they’re telling them something.
- I’m a human being. I’m not a disease that you’re going to catch. I just had something come upon me I never expected.
- Let us be ourselves. Let us feel like we are humans.
Positivity Training Required
From a resident at rehabilitation and living center in North Carolina:
It has been my observation that all CNAs are not trained with the same motivational instinct to be self-starters. Some have a negative attitude that rubs off on others and they need to display more leadership qualities. One should not have to tell the CNA the next step toward completing the goal. They should not say: “Straighten the sheets, fluff the pillows, straighten the bedspread or pick up my shoes from the middle of the floor.”
This is in no way meant to be demeaning to the CNAs. They have an important role to play in healthcare. Training should insure that this role is drilled in them at every possible turn. Such will give them a positive view of their importance.
To Break That Bond is Devastating
Excerpts from an essay by a resident identifying himself as a veteran at a nursing home in Virginia:
According to figures supplied to me by my nursing home, their turnover rate in 2015 was a staggering 41%. When I asked the Director of Nursing what her goal was for reducing turnover in 2017, she looked at me like a deer in the headlights. She gave me the impression she had no idea what I was talking about.
Because of direct care workforce turnover and callouts, managers are forced to pull nursing staff from one unit to another, creating a mediocre resident experience for all those affected.
The direct care professionals are the lifeline residents depend on — to the end.
They are the first to ask about the test result.
They are the ones that cheer for our recovery, praise our successes; they are the welcoming, reassuring smile when we return from the hospital.
They are the first person we call when our burdens become too heavy.
They provide us with the last hug we’ll ever get. The last hand we’ll ever hold. The last hint of affection we’ll ever feel.
They are the ones who weep secretly — silently — so that they don’t appear weak when we die.
To break that bond is hurtful, counterproductive, and produces negative outcomes at all levels.
It Would Be Nicer To Have Some Input
From an essay entitled “How About Asking Us,” from a resident of an assisted living facility:
“We will introduce a new administrator to you, once she or he is chosen,” or words to that effect, spoken to the residents of my ALF by the Big Boss.
The Administrator of the dwelling in which I dwell is to retire soon. Several candidates are competing for the honorificabilititudinitatibus (indeed there is such a word, but rarely used, most notably by Shakespeare and Joyce.) One of the seekers of the job — naturally, the best, whatever “best” is in this case — will be selected on the basis of their vitae and application. Then, a few will be selected to be interviewed (one assumes by the Big Boss). A choice will then be made among the interviewees, and the Administrator will be crowned when being introduced to the residents — we, the people whom s/he will administer. (And without whom there would be no need for her/his administrative abilities.)
Wait. There’s something wrong here: The scenario I have just described omits a role for the residents — those whose lives are impacted by the Administrator. Not to be included as a stakeholder on the Search Committee (There is one, right?). Not to examine the written applications of the contenders? Not to interview them?
While it will be nice to see who will have the say in how we live the final years of our lives, it would be nicer — and more important to the residents — to have some input in the selection process.