Poems of Inner Strength
Spoken by People Living with Mild Cognitive Impairment and their Care Partners
Compiled by Brianna Morgan, MSN, CRNP
Introduction
These poems are the result of my dissertation study exploring inner strength in people living with mild cognitive impairment (MCI). It is broken into three parts: 1. Poems of Inner Strength in Persons with MCI, 2. Poems of Care Partners Supporting Inner Strength, and 3. Other Factors Influencing Inner Strength. The poems were composed from words spoken by people newly diagnosed with MCI and their care partners. At times pronouns were changed to be consistent across the poem. Any changes to the spoken words are in brackets.
Inner Strength for People Living with MCI
People with MCI described their inner strength first by considering themselves and how they were impacted (or not) by the MCI diagnosis in the first four poems: Challenging Times (For This), My Natural State (And Yet), I’m Still Me, and He Keeps His Promises. Next, people with MCI described how they both sought relief from MCI (Seeking Relief) and dwelled in the challenges it brought (Dwelling in It) with further exploration of dwelling in it (Coming to Grips and Taking off the Blinders). Finally, people living with MCI described their inner strength as their ability to “get through it” using four distinct strengths: perseverance, looking on the bright side, accepting MCI, and seeking help in the poem You Get Through It. People with MCI each had different profiles of strengths, some tended toward dwelling and perseverance, while others sought relief and looked on the bright side. There was no “right way” to experience inner strength.
Challenging Times (Right Now, For This)
We've gone through some difficult times.
Challenging times are not new.
He already had his worst nightmare.
My worst experience,
Probably the lowest point in my life.
I went through a lot of turmoil.
They don't go away.
That is something that is always with us.
Simply because
He was in that position where he had to
And he was,
He was still supported.
He's more able to think about leaning on people.
He tries not to get too excited or too low.
Having more confidence.
Just being able to handle difficult situations.
He doesn't step away from challenges.
In this situation,
[It's] not a direct correlation, but
Without having had that experience
He wouldn’t be as willing to do that
Right now,
For this.
My Natural State (And Yet) I feel fairly confident, And yet, I am aware that I'm no longer very strong with numbers I don't have executive skills. My memory is not as good as it used to be My brain is not as sharp as it used to be. I feel like A large piece of me has gone by already. To be dealing with the loss of Your identity Your, your, Your sense of self - It's not where I saw myself. And yet, I'm still doing it. I've tried to compensate For the decline in my natural state. I don't drive into town, I take a train I can balance my checkbook, there are, calculators, you know? Some days I get the New York Times and I read the whole thing. And yet, I'm not the same person, We need to acknowledge that.
I’m Still Me I was born in July We got married We had children We moved I worked on and off all those years Retired Volunteered, We are still doing that. I'm a mother I'm a grandmother I've been with my husband since we were thirteen. I don't think I've changed that much, I'm still me.
He Keeps His Promises To have integrity around What you say you’re going to do It’s part of your entire being You keep You keep doing You keep doing your best To do what you said you would do Even dishes Especially dishes
Seeking Relief We can put it in a box and lock it away Try to put things in compartments. Get it out of my head Focus on something else. If I'm doing something I'm not thinking about it at all. But at the same time, It's there. Dwelling In It He doesn't step away from challenges. In the midst of all this He is able to stop and reflect. You just kind of have to Dwell on it Be there Eat it, basically. Taking each day as it comes.
Coming to Grips Let me absorb this first, Please. Let me just absorb, What is it that I was experiencing. I'm looking at five years I could be In a vegetative state. [I] reflect on How I got here - How far back [I] might, How soon I might. It seems to me like this is karma. Being in their care, Costing them financially, That was one of my biggest fears. That was probably the worst thing For me to grasp. That was the part that I really had to come to grips with.
Taking Off the Blinders It was helpful actually going through the process I started to learn a lot more about me. Things that I never really focused on. Something that dawned on me was I went through life with blinders on. Just looking ahead Going through it too fast Not really stopping to assess. I just completed task and keep going down the road, Moving on. I came to that realization Now I had to start to reflect on what I missed things that I should have seen and didn't see, standing in front of me I just, I just went beyond it didn't deal with it and, continued moving on. That was an eye-opening moment for me.
You Get Through It You find a way to get through things. It's not always easy, I do the best that I can Try to accept as things are Look on the bright side Listen to people Give myself some room Start over and try again But, You get through it, You get through it.
Voice of Care Partners to People with MCI
Care partners to people with MCI supported their loved one’s inner strength but first had to come to grips with what an MCI diagnosis meant for themselves in the poems Can I Handle This, We Promised, and A Care Partner’s Prayer. Care partners supported their loved one’s inner strength by sharing some of the cognitive load in the poem I’m His Brain grounded in their knowledge of their loved one. Care partners also showed how they strived to be a person their loved one could rely on by keeping things in a balance in the poem Keeping and Even Keel. Finally, receiving support from and giving support to their families was important for people with MCI in the poem For/From Family.
Can I Handle This? I always look at little segments of life, I was a little worried, Can I handle the work? Of course you can. You get in there and you do it. I’m worried now, Can I handle this? Of course I can. I’ll get in there and do it when it’s necessary. I’m not out in la-la land being taken by surprise, I’m knowledgeable. This is my reality and I know what that looks like. I went right into work mode.
We Promised We['ve] known one another for quite a while. We've been friends We have been together pre-kids, During, raising all the kids together. And now, post-direct raising of kids. Having adult kids. We're now grandparents together. And we do work together quite a bit on Supporting our daughter here with our granddaughter, And the dog. We made a good pair. We kind of rub along like two little pencils in a drawer. We're so much alike in many ways, Like our sense of humor, How we interact with each other, We're both really smart, We tend to avoid the same kind of arguments, We have similar likes and dislikes. We like to say we're opposites but in good ways We just kinda mesh. We have been taking care of each other, We promised.
A Care Partner's Prayer I am more worried about the future. I’m not the best person for this. I’m so afraid of getting impatient. I get frustrated When I say things three times, See[ing] her struggle, Not knowing what the future holds. If I become just the care partner, It’s gonna look very different than it ever has. And that won’t be very good for it, But it might be the price. It might be the price of safety and caring. Please give me the compassion And strength, The patience, And the kindness To support him as much as he needs.
I'm His Brain She knows that I am forgetful. It's really up to me to try to keep things going. I'm his brain. I cue [him] I remind [him] what [he] need[s] I try to keep as organized and as I can. I end up making lists I try to keep a wide view of what we need to prepare for and We'll try and break it down and Focus on the things that I can do now. The easy things, the gradual things. Looking up what diet is good for people with Alzheimer's I never used to know one supermarket from another, [Now] I'd get my way around Wegmans pretty good. The doctors will say, 'do exercise, make sure you're out walking' My job has become to take [her] for a walk or remind her. Let's find something cognitively engaging. Here's your "like to do" things to make a day feel like it's been an enjoyable day and Here's the "have to do things", and how can we try and balance that? I'm looking for support on information on, on clinical trials I'm not a complete idiot, but for me, it's Greek.
Keeping An Even Keel She understands that I'm here for her. I feel for [her]. I'm trying to be mindful and respectful of [her] wishes. I'm trying to help [her] along with that process mentally. Trying to be more understanding Trying to adjust my own responses I try to get her to talk about it, I try to keep things as best I can on an even keel. [I] want [her] to feel like [s]he still has some independence and freedom. I don't infantilize [her]. I mean, that [s]he's my wife, not my child. Make modifications Making sure that [s]he has the autonomy and Does not feel that anybody is trying to take that away from [her]. I'm not sure I succeeded.
For Family He doesn't work for himself, He works for the family. Not to be in a fancy house A fancy car Take fancy trips. We could do all of that But he worked always for the family Not for self, Not for glory, Just to take care of people We are very independent But when we have to ask for help It is given immediately and unconditionally.
External Factors that Influence Inner Strength
While there were many things that they praised, people with MCI and their care partners felt that there was room for improvement in the healthcare they received for MCI. These suggestions are encompassed by the poem A Magic Wand. Finally, having MCI occasionally made social interaction difficult as it highlighted some of the challenges of experiencing changes in memory and thinking.
A Magic Wand Right at the start, We just need to overall be more proactive, Friendly pressure. What should [a plan] actually look like for him as an individual? You need somebody to sit and look at the whole picture who understands everything. Assess strengths and weaknesses. Where do you need support? How could you leverage the strengths? You gotta go where you're gonna get the right people. Easier access to mental health experts to Help us reorient on what the needs [and goals] are. You have to really take some time to sort through [it].
Spotlighting MCI He's really struggling right now with resilience, Anxiety and fear make it worse. It's an isolating disease. There's a stigma attached to it. I was a bit scared to go see [the] doctor, I have this fear of, "Here's what's coming forward." He feels very vulnerable when he's talking to people that he should know and can't remember. I don't want to show them that I'm failing. [He] hasn't told a ton of people. [He] doesn't want people treating [him] differently. I don't want it to affect my work. [You] try to cover up the loss of memory. It makes you tense asking questions over again. People are always gonna be examining you. [He's] internalized all this.