It will get better. I promise… I must have said that a hundred times to our new resident. She didn’t sleep at all. She searched for her mother, father, friend, a child and a pair of shoes that she must have left in England. She paced the floor for hours on ends. She changed her clothes eight times. She knocked on the doors of my other residents and asked me a garbled series of questions to which I had no good answers. In short, she did absolutely everything BUT sleep.
It was an unusually hectic night and by the end of the shift, I was emotionally tapped out. My new resident was so scared, hurt and anxious and eight straight hours of trying to soothe her in between my other tasks left its mark on me. In the end, I walked with her as she paced, rubbed her back when she cried, and made promises that I can’t possibly keep when she frantically asked questions based on the reality within her mind.
It will get better. I promise. I say it all the time. I redirect and calm and search for pets or loved ones that exist only in my residents’ memories. And yes, more often than not using those skills in those moments will bring a measure of short lived relief. But that doesn’t mean it will get better for them. Not in any lasting or impactful way. I can’t stop the loss of her memories. I can’t take away her confusion and unfamiliarity at her new surroundings nor the sense of abandonment and anxiety that comes from being pulled from one reality and placed into different one. I. Am. Powerless.
Normally I am good at compartmentalizing this awareness. It does no good to let those thoughts dance around in my mind. Such thinking only robs me of space in my head that is better used for what I actually can do to make life better for those in my care…normally. There are moments though when I am struck by a wave of such sadness that it robs me of my breath and I feel crushed; paralyzed by the weight of it all. Usually they hit me when I’m feeling powerless in my life outside of work or have been dabbling too long in my mind for my writing. My mind can be a fun place to be, but there are roads in there better left untraveled. The fact is, both on and off the clock, I deal with some pretty heavy shit. It’s kind of what I do. And acceptance of that, even joy in it, is so hardwired into me that I forget sometimes that it takes a toll if I’m not careful. Those short lived crashing waves of momentary despair are my wake up call. HEY ALICE! You’ve been playing too long in the deep end again! Come up for air!
So how do I stick with it and keep the faith without losing the ability to feel? Without becoming hardened? I get out of the problem as quick as I can and get back in the solution. Can I cure Alzheimer’s? No. Can I make someone living with Alzheimer’s laugh hard? More often than not. Can I force someone to get sober? No. Can I offer numbers and resources to someone who is in desperate need of help? Yes. I can do that. There are many aspects of life over which I have no power at all. Some but not all. I can DO. I can consistently and relentlessly keep moving forward. I can brighten another person’s day. I can do my job to the best of my ability. I can be kind and I can never give up. Even when it sometimes feels like the world is begging for it. That I have power over. That is my choice. Powerless and helpless are not the same thing.
I play peek-a-boo with Claire every chance I get. In fact, it’s our default activity. When I can’t think of anything better to do or time is limited, we play peek-a-boo. And it never gets old for either one of us.
In the first place, it’s just fun. Peek-a-boo is an easy way to make Claire smile and laugh. Making my face “disappear” builds tension and its reappearance becomes the exciting resolution. Exaggerated facial and vocal expressions enhance the comedic and dramatic effect. It’s become like an inside joke between the two of us.
The game has a serious purpose. It teaches object permanence, the understanding that when things “disappear” they aren’t really gone forever. That is, things can be mentally represented even when we can’t see, hear, touch, smell, or taste them.
Object permanence begins to develop between 4-7 months. It is a precursor to symbolic understanding, a major building block for language skills and cognitive development. It’s a very big thing.
Claire and I work on object permanence in more direct ways as well. I present an interesting object:
… and then I hide it on her tray table under a screen, such as a small cloth. Her job is to remove the screen and retrieve the interesting object. If she’s not showing sufficient interest or motivation, the object, I expose part of the object.
Sometimes Claire finds the screen to be sufficiently interesting in itself and simply picks that up, mainly for chewing purposes, and ignores the original interesting object. One way I counteract that is to use my hand as the screen:
And it works thusly:
Another twist in object permanence training is to add a second layer of screening, such as placing a box over the object with a towel over the box.
Peek-a-boo can also evolve into more complex games. In one variation, the adult leaves the room all together and then reappears, or speaks to the child from the other room. This form of play can help ease separation anxiety.
But even in the most basic version with hands covering the face, there is a lot going on when we play peek-a-boo. According to child development professionals, peek-a-boo can help with things like developing self-recognition and teach cause and effect. And it is a form of social interaction. Combining this social aspect with the gross and fine motor activity associated with the game has a synergistic effect on development. Experts tell us that symbolic understanding is a complex operation requiring the integration of a number of processes and as in any aspect of child development, it all works together.
Claire and I will continue to play this game every chance we get. And I expect we will find new ways to play.
In my last post, I listed a selection of conditioning exercises I do with Claire during the day. These exercises address some of the developmental deficiencies associated with her ACC. The hope is that by doing these things now, we can avoid bigger problems as Claire grows.
Like a caregiver working in a long term care setting, my efforts are subject to the limitations – and the opportunities – presented by my work environment. While good caregivers strive to focus on the wants and needs of a resident as an individual, they must do so while accounting for things like the facility routine, the well-being of other residents on the unit, the concerns of family members, and the need to assist coworkers. One of the great disconnects in LTC is that regulations, policies, and training fail to adequately account for the environment in which they are to be implemented. Caregivers do not have that luxury and must learn to balance the needs of the individual with these other concerns.
While the venue is different, my work with Claire involves the same kind of balancing act. I would prefer to spend most of the day focusing on her developmental training, but the reality is that other matters limit the time I can devote to these exercises and I have to adjust accordingly. I think the best way to illustrate this is to share what our Tuesday was like last week.
On Tuesday mornings, Claire goes to physical therapy from 8 to 9. Her mother, my daughter Hiliary, takes Claire to these appointments while I take Claire’s sister, Aubrey, to preschool. After Claire’s appointment, Hiliary drops her off at my house and goes to work…
It is 9:30 now and Claire has been up since 6:30. She always needs a nap within a couple hours of waking. She often does not sleep well at night and these mid-morning naps are essential. And she’s obviously tired from her PT session. I would really like to work on some gross motor and strengthening exercises, but my first task is to change her diaper and get her down for a nap.
Claire wakes up at 11. I have to pick up Aubrey from school at 11:30, so we have to leave the house by 11:15. She was due for her bottle at 10:45, but that isn’t going to happen until we return home with Aubrey. I hold in her my arms and walk around for a moment or two, just to help her transition to being awake. I change her diaper and then go out and warm up the truck. It’s a cold and rainy day. Now it’s time to leave.
We return home with Aubs around 11:50. Claire is overdue for her bottle and that’s the first thing on the agenda. Meanwhile, Aubrey retrieves from the refrigerator a small lunch that I prepared for her when Claire was sleeping. As Claire takes her bottle, Aubrey and I talk about the things we did the day before and whatever else pops into her active little mind.
By 12:15 both girls are done eating. I place Claire in her bouncer and turn on PBS, hoping for an animated kid’s show to keep her occupied while I get Aubs ready for her swimming class held at the middle school pool. Super Y turns out to be sufficiently engaging. I wouldn’t mind sitting down and watching it myself. Another diaper change for Claire and we are out of the house by 12:30.
We get to the school by 12:45. I unload both girls and sign in at the school office. We scurry down the hallway toward the pool locker room, dodging several knots of loud and obnoxious middle schoolers along the way. It’s the last few minutes of lunch time and the chaos is palpable as the kids stream out of the cafeteria. I look down at Claire, still in her car seat. She’s smiling, clearly amused by the excessive animation of these strange and boisterous beings.
In the locker room Aubrey continues to entertain Claire by throwing her shoes and socks at me. I allow this. I take the girls into the pool area and we wait for the instructors and the rest of the students to arrive. Claire watches everyone, but is especially interested in the kids, who are all close to Aubrey’s age. As the teachers start the class, Claire and I retreat to the bleachers. The teachers ban family members from the pool deck during lessons to keep them from offering their unsolicited expertise.
I packed a number of toys to keep Claire busy during the lesson: her touch activated music maker, a small gang of Sesame Street figures for her chewing and tossing pleasure, a multi-function teething toy with mirror, and a stuffed Mickey Mouse that she has put through all the hell her little piranha like mouth can deliver. I take Claire out of her car seat and try a little object permanence exercise (more on this in the next post), but she isn’t interested. Freed from her cocoon, she now has an entire visual world to explore. The high ceiling and the lights in the pool room are captivating. The activity going on now in the pool is way more interesting than any object I might be hiding at that face towel.
The people around us in the bleachers are the most interesting things of all and she’s not shy about looking at them to get their attention. Her little head swivels back and forth, checking out everyone in her radius. An adult to the left of her is deep into his phone and doesn’t notice. Ditto for the mother on the right. Somehow they’re unaware of all this amazing stuff happening all around them.
It’s a strange and wonderful place that I’ve taken her to, but even with all that it has to offer, she becomes fussy after a time. It’s hot and humid in the pool room and I can tell she’s getting uncomfortable. I remove her socks and we leave the pool area. The hallway is pleasantly quiet now as the little heathens are safely sequestered in their classrooms. The cool air refreshes both of us and we spend some time checking out the shiny objects in the trophy case. She studies them for a moment, then turns her head toward me and smiles. Do I get how remarkable these things are? We wave at our reflection in the window of the deserted auditorium entrance. And we spend a little time gazing out the window toward the parking lot. All the while, Claire is content and engaged.
We slip back into the pool room just as Aubrey’s lesson is ending. I strap Claire into her car seat and we hustle back to the deck area to help Aubs wrap up in her towel. As we return to the locker room, Claire is visibly tired, but not yet fussing. She’ll probably fall asleep in the truck on the way home.
On the way home, the girls’ father, Andy, texts me that he just got out of work. This means I’ll be taking the girls to their house and I won’t get another chance to work on Claire’s exercises. My day with her is over.
A Good Day
While I was frustrated over not being able to work with Claire on Tuesday, I know that regarding her development, it was far from a wasted day. I had to remind myself that Claire’s day started with a physical therapy appointment. So while I didn’t work with her, someone else did. After her PT session, my job was to address her most immediate need and that was to get some rest.
While we didn’t have a solid block of time that we could devote to Claire’s training exercises, we were able to fit some things into the day’s activities. Following each of her diaper changes for example, we played peek-a-boo, which is actually an object permanence exercise. When we took our little walk in the school hallway, I made sure that she always had to look to her right to see the interesting stuff. Her weakness is on her right side and she has a strong tendency to look left. So in effect, this served as a kind of conditioning exercise. When I handed her one of the Sesame Street figures, I made her track them left to right and then reach up to her right to get them. And while I’m not sure exactly how all her social observation and interaction works in her development, I’m guessing the experience connected a synapse or two. All of this counts.
Once a week, Claire and I meet with an occupational therapist. She’s a really good one. She has over 30 years’ experience and is tremendously knowledgeable. But what I’m most impressed with is her ability to improvise with whatever items she finds on hand and alter equipment in order to meet Claire’s specific needs. I’ve worked with a lot OTR’s in the past and the great ones have always been master improvisers.
An experienced caregiver is also an improviser. But instead of improvising with things, we improvise with time. Even on the busiest days when other concerns dominate our time, we can find opportunities to address the individual needs of those in our care. The circumstances may not be ideal, but our efforts will make a difference.
And as a postscript to our Tuesday, Hiliary posted the following on Facebook that same night. So, it was a good day after all.
This blog started with the idea that the voice and experience of caregivers has been a vital missing ingredient to the improvement of Long Term Care. A conversation about reform that doesn’t include our voice is like bread being baked without yeast.
When Bob found me on a CNA support site I had been searching for answers. For quite awhile, I had felt lost. I was appalled at how those in our care were being treated by the system as a whole. I was beyond frustrated that nothing my fellow co-workers and I said seemed to matter to those in charge. I was saddened by the fact that this was accepted as a matter of course and I was unwilling to believe that nothing could be done about any of it. By providence, fate, or incredibly good timing, I was ready to jump in when Bob explained his idea for this blog and asked me to be a part of it.
Over the last few years you have walked with us as we expressed the frustration, beauty, humor, love and loss that comes as part of the package in this field. Many of you have shared your experiences with us in the comments or emails. I had no idea how far reaching this blog would be or how much I personally would be affected by writing for it. I did not realize at the time that by simply writing a post a week not only would I be an active part of the solution and have the ability to reach others, but I would be opening a door to allow all of you to reach me.
You…yes YOU, reading this, give me hope. You aren’t sleep walking through life telling yourself that one person can’t make a difference so why bother trying. Instead you are reading a blog that’s very existence proves otherwise. It is an incredibly inspiring and deeply moving experience to be a part of CNA edge. In the process I have learned that I am not alone, that we can and are making a difference and that we all have a responsibility to keep speaking our truths, even when we feel it falls on deaf ears.
If you are reading this, you have impacted my life. You inspire me. Writing these pieces force me to look beneath the surface to the deeper essential realities in this field, to dig deep, be honest about my emotions and fears and face them head on. I can never give up because of you. You force me to be brave because how can I ask you to be willing to take a stand and consistently work for change on every level of this field if I am not doing so myself? How can I expect you to believe that you can make a difference if I don’t believe it myself? What experience is more rewarding than to inspire and be inspired? So, from the bottom of my heart, thank you.
As a caregiver, I cut my teeth on first shift memory care. For years that was my world. Fast paced, short staffed and unpredictable, first shift was nonstop action. I remember thinking it was ridiculous that there was a pay differential for third shift. After all, there work load was so much lighter than ours. It just didn’t seem fair. I thought along the same lines about private care. One client? How hard could it be? Why were they paid so much more than those of us in facilities? Their job was a cake walk in comparison. Of course, at the time I had no experience with private care or third shift but it seemed like common sense to me. I was wrong.
Contempt prior to investigation. My thinking at the time can best be described by that simple concept. And we are all guilty of that from time to time; Viewing people, events, and moments solely through the lens of our individual perception without the benefit of direct knowledge. If the past few years have taught me anything, it is that the remedy for such thinking is actual experience.
Private care was not easy street. In many ways, it was much more challenging for me than working in a facility. Sure, I occasionally lamented the pace and amount of work we had to accomplish on first shift in my facility, but truth be told, that is when I’m at my best. It was harder for me to pull back and refocus my energy than I expected. The hours were long and it was difficult for me to set work boundaries without the guidance of an agency. It could be very lonely and at times I felt very isolated. The flow of the shift was entirely based on other people’s moods and level of pain. There were also amazing aspects of private care. I loved the family. All of them. I loved the freedom of working independently and having the time to really get to know my client. I loved being involved in bringing holidays back into the house and making her laugh. I loved the deeper connections I was able to forge because my focus wasn’t split eight ways to Sunday. That also made it very hard to leave when a new opportunity arose. My two year journey into private care has enriched my experience in this field and added skills, abilities and insight into my work that I would not have gained had I not taken that path for a little while.
Though I’ve only just begun my jaunt into third shift, I’ve already made some realizations. I understand why they offer a shift differential now. It’s true that the work load is much lighter but that is all I was right about. When I worked first shift, I ran hard. I bled for the job, but when I clocked out for the day I was able to leave work at work. For the most part, anyway. Not so on third. So much of my time in the day is spent trying to effectively work sleep into my schedule so I can be awake and alert through my shift that even when I’m not at work, I’m thinking about work. Or thinking about sleep. And everything else has to be worked in between those two things. The extra money isn’t about what happens on the clock. It’s about the willingness to rearrange life off the clock in order to work when the worlds asleep. It’s about the toll that takes on your mind and body. Sad to say, I would not have connected the dots on that had I never taken this position.
So I am very glad my experience in this field has evolved and hope it will continue to do so. These experiences will remind me not to engage in the “shift wars”. We do not need to tear each other down, ESPECIALLY without having the first clue as to what it’s like from first hand experience. I consider it a lesson well learned.
Old People’s Home
– W.H. Aulden
All are limitory, but each has her own
nuance of damage. The elite can dress and decent themselves,
are ambulant with a single stick, adroit
to read a book all through, or play the slow movements of
easy sonatas. (Yet, perhaps their very
carnal freedom is their spirit’s bane: intelligent
of what has happened and why, they are obnoxious
to a glum beyond tears.) Then come those on wheels, the average
majority, who endure T.V. and, led by
lenient therapists, do community-singing, then
the loners, muttering in Limbo, and last
the terminally incompetent, as improvident,
unspeakable, impeccable as the plants
they parody. (Plants may sweat profusely but never
sully themselves.) One tie, though, unites them: all
appeared when the world, though much was awry there, was more
spacious, more comely to look at, it’s Old Ones
with an audience and secular station. Then a child,
in dismay with Mamma, could refuge with Gran
to be revalued and told a story. As of now,
we all know what to expect, but their generation
is the first to fade like this, not at home but assigned
to a numbered frequent ward, stowed out of conscience
as unpopular luggage.
As I ride the subway
to spend half-an-hour with one, I revisage
who she was in the pomp and sumpture of her hey-day,
when week-end visits were a presumptive joy,
not a good work. Am I cold to wish for a speedy
painless dormition, pray, as I know she prays,
that God or Nature will abrupt her earthly function?
The poem that Lynn shared in her post a couple of weeks ago inspired me to start looking at poetry again. This one in particular really spoke to me today. The lines of this poem match up with the faces in my head. I think that’s why I like it so much. It puts into words something that I’ve never been sure how to verbalize- how do I help people who’ve lost so much? Each line brings to mind a resident to match it.
Mrs. E- a stroke took her sight, and old age took her strength. Every time I help her with a shower, she apologizes for taking up so much of my time. Mrs. A doesn’t like my help- her mind is going, but while she still has her body she wants me to know it. Whenever I forget, she’s quick to remind me, “I can do it.”
A resident whose name I can’t remember anymore. “Would you like to go to Happy Hour?” A blank stare at the wall- no. “Would you like to watch some TV then?” An eye roll and a shrug- yes. I turn the TV on, and change it to the channel she asks for. I’d like to stay and cheer her up. But I have two call lights going off, and a shower to give before dinner. The stare has been transferred from the wall to the TV.
Mrs. F. I like to think that she and I have a bond- she might be losing most of her function, but her sense of humor is still intact. After dinner she leaves to round the building in her wheelchair, and I let her go. It’s better than keeping her cooped up on the hall with nothing to do.
The geri-chair group on the Skilled unit. After dinner, we group them around the TV until we can put them to bed. Mrs. W sits and watches the TV, and next to her Mrs. K mutters nonsense, the same phrases repeated over and over.
Sometimes I find myself forgetting that they used to be different. I’ve only known them like this, and in a way, I guess that makes it easier? I don’t have to remember, to look at their faces and see what used to be. But if I pay attention, I can see glimpses that still shine through.
Mr. J used to be a farmer and every once in a while he’ll tell me he can’t go to bed because he needs to check on the cows. Mrs. F isn’t the person she used to be, but she absolutely lights up every Thursday evening when her grandson visits. It’s the longest I’ve ever seen her sit in one place without getting bored.
Mrs. V used to let me practice my Spanish with her, before she stopped walking down to the dining room. Mrs. M likes to chat about crime shows. Mr. B likes to discuss logic and human nature.
They’re still there. Behind the eyes of each of my residents sits a person trying to hold onto what’s left of their life. I find it hard to deal with, and I get to go home at the end of the shift. They don’t. If I’m burnt out, I can’t imagine how they must feel.
My favorite quote comes from the book Unwind by Neal Shusterman. The book itself has nothing to do with long term care, but this one quote has always stuck with me- “Love the ones you can. Pray for the rest.” I’m trying to make this my work philosophy. Each day, I am given a group of people to care for, and for that day, they are mine to love. I can’t do everything. I can’t make legs work or memories come back or pain go away. But I can smile. I can listen. I can look and actually SEE. I might not be able to do everything, I can do SOMETHING. And then I can go home and pray about the rest of it.
I stared numbly at the words that my mind refused to comprehend. Missing man, thirty, found dead in the creek wearing only his underwear. He was just a kid. And suddenly I was filled with such a moment of fury and heartbreak that it took all that I had in me not to pick up the nearest item and throw it through the window. HE WAS JUST A KID!
People who make snap judgements will look at the grainy photo that went along with the article and make false and hurtful assumptions. Probably another junkie. One less drain on the system. He must have been doing something…and then dismiss it from their minds. In that moment I was filled with a rage that such people cast down opinions from the lofty heights of their moral smugness without knowing the first thing about the person or his story.
He was one of my residents several years ago. I remember how shocked I was that someone in his early twenties and physically healthy landed in an assisted living facility. His roommate was more than fifty years older than him and unwell. I thought that there must be a better place for him, more suited to his needs. A safe place where he can be around people his own age with similar challenges and make friends and have a better quality of life. I didn’t consider at the time that deep cuts to the mental health care budget robbed him and many others like him of a better option. There are no long term treatment centers for those living with mental disabilities. He never complained, though. Never once did I hear him say a negative thing about anyone or anything.
He had the mind of a child, but he also had the heart of a child. He was a big guy. To look at him, you wouldn’t think he was so gentle a spirit. You wouldn’t know that he was the first one to help a feisty old lady get down the hall in her wheelchair; just about the only person she would LET help her. You wouldn’t know that he’d give the shirt off his back to a friend. I used to worry about him being taken advantage of by some of my other residents until I realized how much he got from being able to help another. He was kind and he was lonely but he had a good sense of humor and the moments I could coax a smile from him reminded me why I was in this field.
And then one day he was gone. People move from facility to facility or back home to their family with little to no warning. I’ve gotten used to quick adjustments. Old residents move and new ones show up just as suddenly. I didn’t see him for a few years after that, but everyone who has ever been in my care has left an imprint in my life and every now and then I would wonder how he was getting along. Then one day last year, I saw for myself.
On sat nights, I volunteer at a behavioral health center. And there he was! In the support group! Now, the meeting I bring in is completely voluntary so I always feel hopeful when the clients in that short term center choose to come to it. I’m able to offer some numbers and resources that can get them on a path to wellness at least. I feel like I can bring them a little hope, but if I am being honest with myself, I could tell he was not looking so good. He was every bit as kind in that setting as he was when he was living at the facility… but his smile seemed haunted, his eyes looked sad and he appeared way too thin. After the meeting, I gave him a gigantic hug and told him to take care of himself. To talk to his case manager. That I loved him to pieces and that everybody missed him. He smiled and waved as he walked back to his unit. I wish I had taken five minutes to get him some phone numbers. He didn’t ask for any and maybe he wouldn’t have used them if I had, but I wish I tried.
That was the last time I saw him alive.
I want to tell him I’m sorry. I am so sorry that you died in such a way. You deserved so much better. I’m sorry that people failed you and had failed you most of your life. I’m sorry you weren’t protected the way you should have been or encouraged and given the opportunities that so many take for granted. I’m sorry I rushed out after that meeting rather than stay and talk with you for a few more minutes. I’m sorry that cuts to mental health funding and Goddamn politics played a part in the untimely death of such a good kid. I’m sorry there was no one to whom you could reach out and that you fell through the cracks of the systems designed to protect you time and time and time again. I hope part of you knew that you were not alone. I will not forget you, my friend.
As I shared in my last post, our granddaughter, Claire, was born without the fibers that connect the two sides of her brain. This birth defect, called Agenesis of the Corpus Callosum (ACC), has resulted in delays in all major categories of Claire’s development.
For the past few months, we’ve been meeting every Friday with an Occupational Therapist from a program called Early On. During these in-home sessions, we track Claire progress and work with her on developing her gross motor, fine motor, cognitive, and social skills. In the process, the OTR has instructed us in a number of training exercises that address Claire’s deficits. This early training is crucial in Claire’s treatment and it could have a significant impact on the quality of her life. I’ll have more to say about the Early On program in future posts.
For now, I simply want to list some of the exercises we’ve been doing, just to provide an idea what of the training involves. Claire is weak on her right side and she has a tendency to arch her back as means of movement. If not addressed, these issues could result in major physical problems down the road and much of what we do is to correct them. We don’t do all of these every single day, but we do try to fit in as much as Claire can tolerate and the day allows. Right now, I do not fully grasp how these exercises work as whole, but this is something I hope to learn and I’ll share what I discover going forward.
The following mostly involve gross motor functions and I’ll cover other kinds of exercises in future posts. Also, in the coming months I hope to have more photos and videos to help illustrate our efforts. I made up the names of many of the specific exercises, just so they’re easier for me to remember.
1. Overhead Reacher: we place Claire on her back with the toys suspended directly over her face as shown below. This encourages her to reach upward with both arms and thus helps in developing her pectoral muscles. She tends to squirm out of position, so our role is basically to adjust as necessary.
2. The 360: while Claire lays on her stomach, we rock her hips back and forth with an emphasis on flexing her hip on the side she is reaching and moving towards. We place toys in the direction toward which she is pivoting and encourage her to reach for them. We do a full circle in both directions.
3. The 45: while either sitting on the floor or standing, we hold Claire at a 45 degree angle with her head on our left and facing out. It can also be done standing. This helps strengthens the muscles on her right side.
4. Just Sitting: while we sit on the floor, we place Claire on her rear, directly in front of us, either facing toward us or away. We use one of our hands to anchor her where her upper thigh meets her hip and we use the other hand to keep her from flopping to one side or the other. We place toys directly in front of her to keep her focus and balance forward, and to discourage arching.
5. To the Floor: instead of placing Claire directly on the floor, we sit with her in our lap on her belly and transition her to the floor over the outside leg and allow her to reach her hands to the floor and encourage her to “walk” on her hands forward until her entire body is on the floor. This is a kind of simulated crawling and gets her accustomed to using her arms and hands for mobility.
6. Rolling: just what the name implies, rolling from her stomach to her back and vice versa. We practice more to the right side. We also discourage back arching as a means to turn over. We place toys (and interesting people!) in positions that draw her attention toward her trunk area and thus encourage her to keep her chin tucked when she rolls.
7. Side Hold: while lying on the floor on her side, especially her right side, we place a hand on her hip and prevent her from turning either way. As in rolling, we encourage her to keep her chin tucked.
8. Toys on Toes: while lying her back, we dangle toys on her feet and thus she performs a kind of “crunches” exercise when reaching for them.
9. The Red Chair: as shown below, we place Claire in the chair, sitting at 90 degree angle and play games with her. One of the ideas here is to get her accustomed to the sensation of having her feet on the floor. In the coming weeks we hope to replace the red chair with a pediatric corner chair that will help with Claire’s postural control of her head, neck and trunk. This chair comes with a tray so that she’ll be able to engage in other activities while sitting in it.
In all of this, we watch for progress and not developmental deadlines. The antidote to discouragement is action and so we focus on the day to day routine and let the big picture take care of itself.
“I KNEW you’d be back with your stupid smile on your stupid face!”
I bit the insides of my cheeks to keep from laughing as I quietly slipped into her room to assist her to the restroom.
“Well, Alice, at least this time you were prepared.”, I thought to myself, trying hard to keep my face neutral as my resident hurled a steam of inventive and diverse insults in my direction. Thankfully, she was able to walk and talk at the same time. Physically, she did fairly well on her own but she was just unsteady enough on her feet that I didn’t feel comfortable leaving her to her own devices.
I had been warned. From name calling to throwing soiled briefs, this resident was a challenge. Maybe it’s because I had been in private care for awhile or maybe it’s because I had worked so many years at my last facility that I had a deep and loving relationship with all of those in my care, but I thought there was no way she could be that tough a case or that maybe there was a touch of dementia or mental illness involved…WRONG…SO wrong. Her mind was fine. Sharp as a tack, actually, if her comedic timing and penchant for hitting hard with the verbal blows were any indication.
“You DISGUST me. Every one of you! Women are nothing but TRAMPS nowadays”, she kept ranting through the partially closed bathroom door. I stood just outside waiting for her to finish up, still trying my damnedest to keep from laughing and maintain some semblance of professionalism in facing the wrath of…well of the meanest woman I had ever met, quite honestly.
“STILL smiling?!”, she grumbled as she shuffled toward her bed, “you ought to run away with the circus!”, she hissed. She literally HISSED at me.
“Well, I wanted to when I was a kid! But I realized that I was way too clumsy to be an acrobat and I don’t like clowns. It’s not that I’m afraid of them. I just don’t think they’re funny”…while that was all true, I was surprised to hear the words fly out of my mouth. Apparently so was she because her mouth dropped open in utter surprise. I took the opportunity to quickly cover her up with the blanket and make my escape.
The rest of the shift flew by and I felt utter relief as I pulled into the driveway in the early morning light. I went in the house, tossed the keys on the counter, made my way up the stairs and collapsed onto the bed. My boyfriend woke up and asked how my shift was. I groaned and went into great detail on how difficult and mean this one resident was. He listened to me rant for a minute and then pulled me close to him.
“You’ll find a way to reach her. You always do”. He kissed me softly on the forehead and I smiled to myself. The one thing I had forgotten, at least momentarily, was one of the biggest reasons that I am in this field: To reach people so they know they are valued and not alone. No one is born that mean. And with his reminder and his kindness, I knew that I would try again with her tomorrow. And the next day. And the next…
My granddaughter was born with a brain disorder called Agenesis of the Corpus Callosum (ACC). In short, she lacks the nerve fibers that connect the two sides of her brain and allows the two hemispheres to communicate. The absence of these fibers has an impact on every aspect of her development.
Claire will be a year old at the end of April. She’s about three months behind in most developmental milestones. For example, she is still unable to sit unsupported, a task usually accomplished at around 7 to 8 months. While she’s making progress, it’s been slow and uneven. On the plus side, Claire loves to interact with people, takes interest in the environment around her, and her sweet smile lights up the room wherever she goes.
ACC is a birth defect that has no single cause and has no cure. It can be accompanied by other genetic abnormalities or medical conditions, and is often misdiagnosed or undiagnosed altogether. However with the more common use of neuro-imaging techniques, such as MRI, there has been an increased rate of diagnosis. While ACC typically produces symptoms during the first two years of life, in mild cases discernible symptoms may not appear until later in life. In these cases the disorder presents primarily as a social deficit, such as difficulty in reading body language or understanding social cues.
We are not sure where Claire is going to end up in terms of her development. What we do know is that early diagnosis and intervention are key to treatment. So while there is no cure, we are not helpless and we know that what we do now can have a huge impact on the quality of her life later. While we cannot save Claire from the challenges presented by her deficit, we can minimize those challenges and equip her to better face them.
During the week, I am Claire’s primary care provider while her parents, my daughter Hiliary and son-in-law Andy, are working. After her maternity leave ran out, Hiliary tried other care arrangements for Claire, including a standard day care situation and then in-home care. But nothing worked. Claire was very difficult to feed and she was not growing. She was seriously at risk and there was even some talk of inserting a feeding tube. Since I was already watching their four-year old, our granddaughter Aubrey, in the afternoons after school, Hiliary asked if I could take Claire as well while they figured out what to do.
On CNA Edge, we’ve talked about how the skills and life lessons we’ve learned as caregivers in a long term care setting can be applicable to other aspects of our lives. My experience taking care of my granddaughters is a perfect and on-going example of that. I’ve always enjoyed spending time with my grandkids, but this is another level, particularly so given Claire’s needs. What I discovered is that not only am I capable of handling this new responsibility, I love doing it.
Much of how I experience a typical day with Claire and Aubrey parallels my thirty-five years’ experience in LTC. Those years conditioned me to be acutely aware of how time is used in a care situation: the need to organize it on the fly, to improvise and prioritize, to be efficient without being impatient, and to focus on the task at hand while simultaneously thinking ahead. This is crucial when it comes to Claire because I have to solve this daily time puzzle in a way that creates islands of time where I can focus specifically on her training.
Just as we sought to emotionally engage our elders in LTC during routine care tasks, I know that I must continually infuse the daily routine with habits that enhance Claire’s development. This includes simple things such holding her in my right arm instead of my left. Diaper change doubles as peek-a-boo time. Almost every mundane activity or movement is accompanied by a verbal cue: “light on,” “light off,” “down we go,” “uuuuup!” This purposeful way of doing things requires a kind of multi-level multi-tasking, a skill common to seasoned LTC caregivers.
Also, while there is a sense of urgency here, my years as a LTC caregiver taught me how to pace myself emotionally, to be in it for the long haul. I know not to be too hard on myself when my energy fades or I lose focus, and I know there will be times when I will feel like I haven’t done all that should be possible. I know that a care routine can sometimes be a grind and that periods of discouragement and even boredom are natural – and that they are temporary. And last, but certainly not least, those thirty-five years have provided me with the awareness and expectation – and appreciation – of those singular moments which give meaning beyond the basic necessities of providing care and are so vital to sustaining one’s spirit. Of course, with my granddaughters, these moments come easy and often.
For the next several months, my posts on CNA Edge are going to be a combination of a chronicle of Claire’s progress, a look at ACC and child development, and an introspective relating what I am experiencing, not just as a grandfather, but also from a caregiver’s perspective. Already the experience has reinforced my belief that there are certain aspects of caregiving that are universal and that this wider definition may be of some use.