Category Archives: Posts by Contributor

A Not so Obvious Picture at the Grand Rapids Home for Veterans

Bob Goddard

In early August, a disturbing news story broke about the Grand Rapids Home for Veterans, my old workplace.  After an investigation by the State of Michigan’s Attorney General’s office, eleven former employees – all direct care workers – were charged with falsifying medical records. The caregivers charted that they had checked on members (the Veterans Home refers to the residents living there as members) while surveillance video shows that these checks were not done. In Michigan, falsifying medical records by a health care provider is a felony, punishable by up to four years in prison and a fine of up to $5000.

The investigation followed a scathing February 2016 report by the Michigan Auditor General. According to that report, the home failed to properly investigate allegations of abuse and neglect, took too long to fill prescriptions and operated with inadequate staffing levels. Both the Attorney General’s investigation and the audit came almost three years after the State privatized the entire direct care workforce at the home, thus replacing a dedicated, stable direct care workforce with contract workers from a demonstrably unreliable agency, J2S.

The eleven workers charged by Attorney General’s office were employed by J2S. That company was replaced by two other contract agencies last year after J2S repeatedly fell short of adequately staffing the facility.

As we have come to expect in media coverage of anything related to long term care, the local media treatment of this story displayed a superficial understanding of how a long term care facility operates and relied on sensational wording to make the story more compelling. In the process, the reporting presented a misleading picture of how caregivers go about their work. While reporters expressed outrage over the quality of care at the home, they seemed clueless regarding what it takes to make good care happen. I think it would be useful to correct this and offer a different perspective.

In one report following the announcement of the felony charges against the caregivers, a local TV reporter assured viewers that the Attorney General’s investigation “paints a pretty obvious picture of the situation” and concluded that bringing the charges does two things: “it holds people accountable for what they did,” and second, “I can guarantee you tonight at the home for veterans they’re going to be doing their member checks.”

The assumption in that last statement is that fear is a necessary and effective motivator in providing good care. This is a common fallacy among observers unfamiliar with the nature and practice of caregiving. You cannot get genuine compassion and caring from fear.

Yes, as our visibly self-satisfied watchdog reporter suggested, I’m guessing “those member checks” were indeed “being done tonight,” but as I will explain below, that form of diligence has little do with the actual quality of care at the home.

The media reports and statements from the Attorney General gave the impression that these hourly checks were at the heart of what caregivers do. They are not. In fact, the hourly checks are superimposed over normal care routines. In a typical institutional setting, each caregiver is assigned a group, usually ten or more residents depending on the shift, unit and facility, and is charged with completing a whole series tasks including assisting with the residents’ personal hygiene, bathing, grooming, dressing, toileting, bowel care, skin care, turning positioning, transferring, ambulating, transport, serving meals and feeding patients, offering fresh water and snacks, take vital signs, make beds, keep the residents’ room clean, answer calls lights and respond to requests, record intake and output information, observe and report changes in residents’ physical and mental condition. And of course, document these activities via flowsheets and other similar forms. The location sheet is one of these forms.

It’s important to understand that given the direct care staffing levels in a typical long term care facility, and this certainly includes the Grand Rapids Home for Veterans, assigned caregiver workloads are rarely possible to complete – not to the standards set forth by regulators, facility policy, and customary nursing practices, let alone family and public expectations.  This means caregivers are constantly engaged in a form of care triage, made necessary because no one above them in the Long Term Care hierarchy, including policy makers and legislators, seem able to provide the resources necessary to do the job according to standards. Either they lack adequate awareness of the problem or are simply not willing to make the hard choices. By default, this is left to the direct care worker.

Given the inadequacies of the system, the best a caregiver can do is to arrange these various tasks in some order that makes the most sense for everyone in the group, taking into account the unit’s mealtimes and other facility routines. While a good caregiver tries to plan ahead, working with human beings means that unexpected needs routinely arise and no can anticipate everything.  Each shift becomes a unique time puzzle that the caregiver must solve if the residents are going to receive the best care he or she can provide. But the puzzle is dynamic, the “pieces” change according to the immediate needs and expectations of residents, coworkers and management. The caregiver must continually adapt his or her time organization to ever changing circumstances and priorities. In essence, the caregiver spends the shift involved in perpetual problem solving with ethical implications.

At the Veteran’s Home, the check sheets are kept behind the nurses station while the majority of care is conducted in the members’ bedrooms and bathing areas. So, to properly document the checks consistently in a timely manner requires this absurdity: the already overwhelmed direct care worker must pause care and walk away from the members for whom she is providing care for the purpose of putting her initials on a sheet of paper that indicates she knows the location of the members she was just with. This may provide the facility with documentary evidence and meet an institutional need, but it does not necessarily address the needs of the members.

If we are truly concerned about the quality of care for our veterans, the real question is not whether or not the checks were properly documented, but what the caregivers were actually doing when they indicated they made the checks. Were they in the shower room with a member or making sure an unsteady member wasn’t tumbling off a commode or perhaps transporting a member to a therapy appointment? Were they in the middle of assisting a member with his meal or helping a coworker transfer a 350 pound man from his bed to his wheelchair? Were they responding to a member’s urgent request for help? Were they redirecting a confused member for the tenth time in the last five minutes? Were they assisting another caregiver who was trying to manage a combative member? Were they comforting a member who was experiencing some kind emotional turmoil? Were they on their way to nurses’ station to get the location checks clipboard when they noticed a call light? Were they with a sick member, maybe dealing with copious amounts of diarrhea or vomit? Were they cleaning up a spill that presented a fall hazard? Were they speaking with the family of a member regarding their loved ones’ care and status? Were they holding a dying member in their arms? Or perhaps they were engaged in a member’s post-mortem care.

I will leave it to the Attorney General and media reporters to decide to which of these activities caregivers ought to interrupt so that they might properly document the checks – and presumably stay out of prison.

Let’s be clear, if the workers were sitting behind the desk or off the unit or otherwise not engaged with the members when these checks were supposed to be made, then our sympathy and support for them evaporates. Not because they didn’t make the checks properly, but because they weren’t with the members and on task. Even in bad work environments, caregivers are ethically and morally obligated to the use the time and resources that they do have to do the best they can for the residents.

Of course, it could be argued that the hourly checks provide a more systematic way of accounting for the members’ location and condition. Regular checks ensure that no one gets forgotten.  It seems obvious, right?

However, when you start to look at how caregivers actually gather information and keep tabs on the members in their group, the hourly checks take secondary importance. Caregivers are routinely provided with a “cheat sheet,” a one or two page list of all the members in their assigned group. The cheat sheet includes basic care information for each member. The caregivers carry these sheets with them and will refer to them throughout the shift. Even caregivers who are familiar with the members in their group will often use the cheat sheet as an aid to help organize their time and, of course, to help make sure no one is forgotten.

Given the real needs of the members, the fact that the checks are hourly is completely arbitrary. The reality is that some members don’t need to be checked that often and some leave the grounds for long periods – as is their right, it’s a home not a prison. Other members may need to be checked even more frequently depending on their particular physical and mental status.  A lot can happen in 59 minutes and the hourly checks can no way guarantee the safety and well-being of all members. The best way to keep members safe and their immediate needs met is to have well informed, well supported, on-task caregivers. And by well-informed, we mean caregivers who are thoroughly familiar with the members – not just with their current medical status, but who they are as individuals, their daily needs, preferences, and habits.

By threatening caregivers with prison sentences and the like, we can make them jump through hoops and give the appearance that good care is being done, but we should wonder what is actually being missed while they’re putting on this show for us. As our watchdog reporter implied, fear will elicit a sure response. But with fear, the issue becomes not about the real quality of your work and how those in your care are experiencing it, it’s about how you think it’s being perceived by those who can punish you. Under siege, our actions are informed not by our sense of right and wrong nor even by common sense, but by the assessments and attitudes of those who are judging us. When those assessments and attitudes are based on faulty perceptions – which is often the case in long term care and certainly the case here – our priorities become skewed and we add yet another obstacle to good care.

Fear won’t take caregivers into the places where genuine compassion and caring will go. As a motivator, it’s a weak and insufficient substitute for the truly powerful motivations that result in the best care possible. On the other side of those closed doors and privacy curtains where caregivers engage members and actual care takes place, you really want people who are inspired by the better angels of their nature.

The quality of care in any long term care facility is directly tied to the facility’s investment in the caregivers who provide it. Paying direct care workers good wages with decent benefits not only helps attract and retain workers, but it also gives them the means to adequately provide for themselves and their families. Many caregivers have no choice but to work a lot of overtime or find second jobs just to make ends meet. The work itself is physically and emotionally demanding, and when you add the stress of double shifts and long hours, the result is a caregiver workforce perpetually on the edge burnout. You can’t get the best possible care on a consistent basis from workers who are physically exhausted and emotionally drained.

It should be no mystery why J2S had such difficulty staffing the place and why even now one of the current contract agencies continues to have problems. The shortage of caregivers has become a nation-wide crisis and annual turnover rates for direct care workers typically run between fifty and sixty percent. Prior to the State’s privatization of the direct care workers, the Grand Rapids Home for Veterans was immune to this crisis.

The cost of losing that stable direct care workforce cannot be overestimated. Caregivers who are unfamiliar with the members in their care groups cannot possibly provide the same level of care as those who have had long standing relationships. But we continue to routinely throw these workers into chaotic situations and expect them to perform a high level. Usually they feel fortunate just to get through the shift with no major disasters. Or investigations.

While a sense of duty and a good work ethic are necessary in providing adequate care, there is no substitute for the personal relationship that develops between the caregiver and resident. This bond is the single most powerful motivator in providing excellent care. In environments where these relationships are encouraged to develop and flourish, workers become more caregivers, they become advocates.

If the caregiver has a moral obligation to do the best for his or her residents despite difficult circumstances, then those above us in the hierarchy and those on the outside who seek to influence the activity of caregivers have an equally compelling moral obligation to understand the consequences of that influence. This requires a basic awareness of the real challenges faced by caregivers and insight into what really motivates them. From what I’ve seen, both the Attorney General and the local watchdog reporters have failed to demonstrate that awareness and insight.

  

Claire’s Chairs

 

 

Bob Goddard

One of the primary concerns in Claire’s early development is her tendency to rely on arching her back as a means of movement. Like any other infant, she has a natural impulse to move her body, but because of her ACC she is unable to easily perform more complex forms of movement that require coordinating her hips, legs, and arms, such as crawling or sitting up by herself. Her dependence on arching inhibits her gaining the strength, flexibility, and confidence required for these more refined movements. We must condition her not to pop into that backward extension.

One of the key elements in helping Claire overcome her “arch addiction” is posture training. The mantra here is 90-90-90: hips at 90 degrees, knees at 90 degrees, heels at 90 degrees. For this, we have a small arsenal of chairs at our disposal.

The most useful of the bunch is the corner chair:

Not only does the corner chair help Claire maintain the 90-90-90, it also provides support on each side. A tray fits over her lap, allowing her to manipulate and play with objects and enables us to engage with her without the necessity of us physically supporting her. The corner chair is comfortable and secure enough that she can spend up to an hour or more at time in it. Since Claire spends most of her time at home, we keep the corner chair at Hiliary’s house.

At our house we use the Lechy chair. This essentially works the same as the corner chair, but without the side supports. We have to make several modifications to make it work for Claire: we use a book to bring her small body forward in the chair so that her knees are at 90, an empty box for a platform to rest her feet, and a scarf loosely secured around her ankles to help keep her feet at or near the all-important 90. As with the corner chair, there is a tray for activities.

I also use what I simply call the “red chair.” Claire is secured in the red chair by vertical straps and a pommel. The floor serves as a platform for her feet. Unlike the corner chair and Lechy chair, I have to stay within arm’s reach of Claire while she’s in the red chair because she is quite capable of rocking it and there is a real potential for a pretty severe face plant. One advantage of the red chair is that there is zero pressure on her abdomen, so I actually prefer to use it after she eats. This is especially important given Claire’s problem with acid re-flux.

While the chairs serve a critical function, they are only a part of the program. The real strengthening comes from floor play, and from the habits and practices of her caregivers: how we carry her, hold her, and pick her up. I’ll talk about these in upcoming posts.

At some point, Claire will learn to sit up by herself and crawl and eventually walk. But the quality of these accomplishments will depend in large part on how well we can help strengthen and redirect her body now. And since it all works together, this will have a major impact on her cognitive, social and psychological development as well.

My New Work Partner

 

 

Bob Goddard

In my last post I talked about the value of good work partners. For a caregiver employed in LTC, working with a good crew can make even the most difficult situations tolerable. A healthy and happy work environment isn’t really sustainable without making some effort to maintain a positive working relationship with your fellow caregivers.

In this job, you really do have to take care of the people around you. This includes an awareness of your coworkers’ needs and circumstances. Yes, we are there for the residents, but when we neglect or mistreat our work mates, we are poisoning our own work environment and this will inevitably impact the people who live there. I’ve known some aides that had some great qualities as caregivers, but couldn’t keep their mouths shut when it came to what they perceived as the inadequacies of other workers. Rather than simply dismiss fellow caregivers as unworthy of the work, how much more effective it would have been had they offered their assistance without judgement when they saw a need and perhaps through their actions provide a better example of how to approach the job.

In my current daily routine with Claire, I am blessed with a great work partner: my 4 ½ year-old granddaughter, Aubrey. From a caregiver’s perspective, Aubrey would be considered a part of my “case load.” Indeed, she does demand considerable time and attention – and she can be quite a distraction for Claire. But she also assists me in ways both big and small. In fact, when it comes to Claire’s care and training, she can do some things much better that I can.

Like my old work partner Russ at the Veterans’ Home, Aubrey is very familiar with our care routines and habits, and she knows when to jump in and help. Most of the time, she’ll do this without direction from me. If I’m involved in some task away from Claire and she gets fussy, Aubrey is right there to give her sister a pacifier or entertain her with a toy until I’m able to focus on Claire again.

Whenever I’m engaged in an activity with Claire, I always make sure that Aubrey has the opportunity to participate if she chooses. Just as Russ and I complemented each other with our differing approaches to our residents, Aubrey adds a quality to the activity that I am unable to provide. Claire simply has more fun and stays engaged longer if Aubrey joins us.

Of course, I often have to redirect to keep both girls on task, but I try to do this by example and not through verbal correction. Sometimes the structure of the activity breaks down entirely, overwhelmed by sisterly chaos and mirth. That’s okay, at that point, we just move on to something else.

When Aubrey chooses to occupy herself in parallel play, she can still be extremely helpful. In our effort to correct Claire’s dominant tendency to arch her back as a means of mobility, we do a lot of floor work in which we try to keep her focus forward. Sometimes this is simply a matter of sitting her on the floor, placing her favorite toys in front of her, and having her reach for them. If Aubrey is playing nearby, I always try to orient Claire toward her sister with the toys in between. To Claire, Aubrey is the most fascinating thing in the world and she’s more motivated to sustain her forward focus when her sister is in front of her.

Like any work partnership, this is a two-way street. One of Aubrey’s favorite activities is taking care of her babies. When I’m busy with Claire, Aubrey is busy with her “group.” This consists of one or usually several “Baby Alive” dolls, most of which are capable of some bodily function.


Aubrey takes her care activities very seriously and I am obligated to pay proper respect to her efforts and assist her when necessary. Sometimes this means I have to stop what I’m doing with Claire to help Aubrey put some article of clothing on one of the dolls or take a turn feeding one of them or perhaps help search for some microscopic toy part of critical importance. Other times, it can mean turning off the music and tip-toeing around the house, because it’s nap time for her babies.

Here, I was rightfully chastised for taking a photo that happened to show in the background her changing her baby  (“You DON”T do that!). I duly apologized for the indiscretion:

Clearly, it would be a mistake for me to dismiss Aubrey’s play concerns as frivolous. If I want her cooperation with what I do with Claire, then she should be able to depend on me to do the same for her group – whatever that may consist of from day to day. That is what good work partners do.

There is something else going on here. Aubrey will often use her babies to imitate my activities with Claire. She’s learning by watching and doing, developing skills that will serve her for a lifetime. In a very real sense, I’m training her as much as I’m training Claire. And while Aubrey does not yet grasp the meaning of Claire’s ACC, she is already learning some valuable lessons on how to treat it. As both girls grow, Aubrey will have more influence on her sister’s development than any of us.

In a couple months, I will be losing my valued work partner. Having recently graduated from preschool, Aubrey will be attending full-day kindergarten this fall. While this will leave me more time to work with Claire, I’m really going to miss my little work partner.

My Old Work Partner

 

Bob Goddard

For a caregiver, there is nothing like a good hall partner to make the shift go right. Reliable coworkers that you get along with can help you maintain your sanity even on the most challenging days. They can make the difference between looking forward to coming into work or dreading it. During my 25 years as a caregiver in the veterans’ home, I had many such hall partners. One that stands out for me is my old buddy Russ.

While we worked well together, Russ and I had completely different personalities. Russ was loud, gregarious, and not afraid to speak his mind – to anyone. He was a big guy, with long hair and sported more than a few tattoos and body piercings. I was always more reserved, careful with my words, and more deliberate in my actions. And I was far more conventional in my appearance. However, he did talk me into getting a couple of small tattoos, one of which he did himself as a budding tattoo artist.

On the unit we complemented each other well. We were each assigned permanent groups, but we knew each other’s residents as well as we knew our own. When one of us had the day off, we knew the other would be watching out for our respective residents. “Take care of my boys tomorrow,” Russ would remind me before a day off.

We also knew each other’s routine and work habits. Russ was always around when I needed help. I always pretty much knew where he was and I didn’t have to spend a lot of time running around the unit looking for someone to spot me on a Hoyer lift or assist with a two-person transfer. And I did the same for him. I just kind of knew when to show up in one of his rooms. In fact, Russ referred to this as my “Jedi Wall Trick,” this uncanny ability to suddenly, but quietly appear – as if I walked out of the wall. It actually kind of freaked him out a little; he would grin and shake his head, and ask me to stop doing that.

We each took different approaches to our residents. Russ was more forward, sometimes a little too forward, and I would have to steer some of his interactions in a more appropriate direction. The same level of familiarity with certain residents in a care situation might not be as acceptable in a more public setting. At the same time, Russ had a knack of bringing residents out their shell and could reach them in ways that didn’t come natural to me. He showed me that being authentic, especially when laced with humor can help break down social barriers and actually strengthen the bond between resident and caregiver.

Due to the nature of the beast, caregivers in an institutional setting often have to work with a looming sense of turmoil and even fear. We may like the work and enjoy our residents, but sometimes we’re not so crazy about our place of employment nor the system under which we work. In this kind of atmosphere, we learn to rely on each other to keep it real. And more than anything, Russ helped to keep it real.

In my next post, I’ll talk about my current work partner.  She’s a few feet shorter and a couple hundred pounds lighter than Russ, but just as valued.

The Power of Peek-A-Boo

 

 

Bob Goddard

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.

Do What You Can, With What You Have


 

Bob Goddard

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…

Our Tuesday

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.

https://www.facebook.com/hiliary.goddarddykstra/posts/1692208354177393

What I Can

 

 

Rose

 

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. 

 

Claire’s Training Exercises

 

Bob Goddard

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.

Claire

 

 

Bob Goddard

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.

Time Marches On

 

 

Lynn

One of the things I like about working in Long Term Care (LTC) is the relationships we develop with residents over time. We get to know our residents almost as well as we know our own families, sometimes even better than we know our own families.  This is also one of the things I don’t like about working in LTC.  After Death takes a resident and an empty space is all that is left.  The resident’s bed is empty, where they used to sit in the dining room is empty; there is a sense of emptiness throughout the building and that emptiness can be deafening.

The worst part of a death is the silence that accompanies the emptiness. Their names aren’t mentioned in the daily reports and are removed from the care lists. Their special dietary slips aren’t printed anymore. The name on the door is gone. Their old pictures and cards are missing from the walls of their room.  Their chart is put into storage. The existence of that person is wiped away from the white board of LTC life.

There is a poem called “Funeral Blues” written by W.H. Auden.  The first line of the first stanza comes to mind when that special person leaves with Death: “Stop all the clocks, cut off the telephone.” I desperately want the clocks to stop and the phone to stop ringing.  I want time to stand still for 10 minutes, 30 minutes, an hour.  I want to stop moving, to stop marching forward with time and grieve over the awful silent void left by my special resident’s departure.  But clocks don’t stop. Phones keep ringing because the living can’t wait and time marches on.  

Funeral Blues 
W. H. Auden
 
Stop all the clocks, cut off the telephone, 
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead.
Put crepe bows round the white necks of public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West.
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever; I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood;
For nothing now can ever come to any good.