Tag Archives: families of residents

Deal or No Deal: Choosing a Long-Term Care Home



They’ll want to show you their renovated patient rooms and their glitzy calendars. They will want you to see the art room and hear about the visiting music therapist. They’ll make sure you notice the flower-bedecked reception area and see the nicely-appointed dining room. They might even cite the training their aides receive. And these are all positives. But administrators of long-term care homes may not encourage you to examine the nuts and bolts. To spend the time it takes to make a true assessment of the standard of care and the residents’ ‘joy’ levels. (Yes, that’s what I said, JOY.) You need a more evidence-based way of assessing the quality of care your loved one will get in the long-term care home that may cost $4000 to $12,000 a month. What do you look for to judge the quality of the home?

When you visit a long-term-care home your tour guide might want to direct your attention to superficialities or to things no longer relevant for your family member, especially one declining physically or cognitively. (Smart TVs, anyone?) Here are some features that are essential for your family member’s well-being. Look for them. These are the minimum No-Frills tests your prospective long-term care home should be able to pass.

1. The Wheelchair Test, suggested by ‘May,’ a former CNA Edge contributor. When you visit a home take a good look at wheelchair footrests and frames. Are they clean? If not, other unseen areas may be neglected. Are footrests attached to the wheelchair? Sometimes a resident benefits from ‘paddling’ along with her own feet; this can strengthen ankle or leg muscles. But if you see residents being wheeled uncomfortably without footrests, this may signal minimal attention from aides and inadequate monitoring by nursing supervisors.

2. The Bathroom Linen Test: Are there clean facecloths and towels in bathrooms? Shortage of towels is a perennial problem in care homes. If management is asked they will tell you that the residents hide towels, and this is sometimes the problem. But sometimes the problem is that there simply aren’t enough towels, or not enough laundry workers to ensure that clean towels are always available. How can we maintain hygiene standards if there aren’t clean bathroom linens? Ask to visit a few resident rooms. If the tour guide discourages you from seeing occupied rooms (“Privacy Rights.”), befriend a resident and ask if you can see his/her room. This will nearly always gain you access.

3. The Warm Water Test. All medical authorities tell us that hand-washing with warm water is the best way to prevent the spread of infection. CNAs are expected to wash their hands with soap and warm water frequently. When you visit a room, check out the sink. Do warm-water faucets in residents’ bathrooms and hall toilets actually run warm? How long does it take to get hot water? If you aren’t able to enter a resident’s room, try sinks in the visitor’s toilets, in the kitchen area, wherever you can find a sink that should have hot running water. The water may warm up after two or three minutes. But when an aide might have only five or ten minutes to get a resident washed and dressed in the morning, she might not have that two minutes to wait. Your family member might get a cold face cloth first thing in the morning. Is this what you want? Do you want the most basic infection-control measure, warm water, to be MIA?

4. The Bath Room Temperature Test. Visit the bath or shower room. Is it warm enough? Older residents usually want warmer rooms for bathing. When they leave the bath or shower, they shouldn’t shiver and shudder.

5. The Call-Bell Test. Do you hear annoying call bells that go unanswered? How long does it take an aide to attend to the person calling for assistance? If these annoy you, imagine how they affect a resident who feels anxious and confused.

6. The Chair-Alarm Test. Notice the residents’ bed and seats (both wheelchairs and other seating) to see if there is a chair alarm on the seat. Virtually every group with an interest in improving the lives of residents in long-term care homes, including CMS, recommend eliminating the use of chair alarms. “But these keep residents safe,” supervisors will say. Evidence suggests that they don’t keep people safe and indeed lead to more falls. (Google it!)
7. The Noise Level Test. It’s not only alarms that can distress residents. If aides routinely shout down the hall to each other, this can be upsetting.

8. The Dining Room Test. How is the noise level? Is hot food served deliciously warm? Are residents offered condiments (salt, pepper, sugar, mustard, ketchup) they would have used at home? Are the aides attentive to residents or do they converse mostly with each other during mealtime, as if this were an extra break time? For those who can no longer use a knife, is the food served in bite-sized portions that the person can comfortably chew? Are residents offered refills of drinks?

9. The Calendar Test. Every long-term care home has its monthly calendar of activities posted prominently. Pay attention to the type of activities offered, how often the calendar matches what is happening in real time, and whether residents seem engaged when they are at the activity session.

10. The Family Council Test. In elder care homes a Family Council is one of the strongest ways we have of monitoring care and advocating for high-quality care for residents. Many homes do have resident councils, but frail elderly residents, especially those with dementia, either don’t know their rights or just can’t express their needs and preferences and criticisms. They rely on us, their family and friends, to be their eyes and ears and their mouths. Once they needed you as a caregiver, and you did that lovingly. Now they need you to be their advocates. So ask whether the home has a Family Council.

11. The Staff-to-Resident Ratio Test. You want your family member to get the attention and care she/he needs. You ask the supervisor about staffing levels and are told, “We meet all the state’s requirement for the number of staff.” And they probably do. The problem isn’t that the home isn’t staffed according to standards. It’s that the standards don’t meet today’s needs. Our expectations for care are higher today. Residents’ needs are also greater; many have cognitive as well as physical disabilities. In some homes there is one aide assigned for eight or ten (sometimes more) residents. And if an aide calls out sick or has a family emergency at the last minute, the ratio is worse. Care quality is worse. Though you may not find an ideal staff-to-resident ratio anywhere, at least ask about this. Ask whether census or resident acuity determines the staffing level. Ask how the home assesses resident acuity, and whether dementia symptoms are factored into acuity.

12. The Supervisor Test. Who is responsible for monitoring care standards of the unit your family member will live in? Where is that person’s office located: within the unit or in some distant section of the home? Ask to see that person’s job description. (After all, you’re paying the salary!)

13. Last but not least: The Aide-Engagement Test. Do aides smile and make eye contact when they engage with residents? Do they seem to know and respect the residents’ needs and preferences? When a resident calls out for something—a snack, an answer to a question, a response of some kind, how do the aides respond? This may be the most important thing to look for on a visit: how aides interact with residents. To get a truer picture of aide engagement you’ll need to visit several times, including weekends and at different times of day or evening. Midmorning. Mealtimes. After supper. Try to visit during a change of shift. Are aides still available to pay attention to residents during shift changes?

When you’re evaluating long-term care homes, don’t be overly swayed by the charm initiatives of the marketing staff. Instead, use this checklist to observe those conditions your family member will live with day in and day out. There is more involved in achieving excellence of care. But these concrete items can be clues to less visible elements of quality care. If those in charge aren’t getting even these basics right, are they really committed to the loftier goals they claim to have?

Just a Perfect Day




Ah, the Family Guy. I love that show. I can put it on after a long shift and all is right with the world. It’s not everyone’s cup of tea, though, so you can imagine my surprise when I heard the opening tune through the door in the bathroom as I was getting my client dressed. Well, this should be interesting. My client’s fourteen year old granddaughter was over for the day. I couldn’t be happier about that. It’s something that I had been pushing for behind the scenes for a while now. I thought it would be good for them both. 

    One of the benefits of being an independent caregiver in a family’s home is that I have much more influence than I did in a facility. This comes with a lot of stressors and frustrations that I will save for another post, but it also puts me in a unique position to do some good. So it was GIRL’S DAY! And the kid was watching old episodes of the family guy. How this would gel with my client’s ultra-conservative views, I could not say, but hey, at least we were all together. 

     I pushed my client to the living room and positioned her in her lounge chair. We had plans to go to the movies, but her level of pain and the weather did not cooperate so we had to come up with a new game plan. In the meantime, Stewie was beating up Brian. 

      “Why is that baby beating up a dog?” she asked.

       “He owes him money!” her granddaughter replied. I knew this episode well. Time to redirect a little. My client’s social morays may not be able to handle the family guy for very long. 

    A self-described “emo kid”, the granddaughter was absolutely beautiful, though she didn’t realize it. Her hair was so rock and roll, that if I could pull it off at forty, I totally would. She’s a creative, sensitive, interesting kid trapped in that unforgiving age of fourteen. I hated fourteen and after knowing her for ten minutes, I felt a real kinship.

     As the day went on, I realized that this was not only about my client. Her granddaughter was enjoying it every bit as much as she was. So was I, for that matter! All of our plans fell through, so we rented a movie on TV and ordered a pizza. Because it was just the three of us, both granddaughter and grandma opened up to each other in ways that they may not have been able to otherwise. I reached into my bag of things that I don’t know about and listened enthusiastically as they both eagerly shared make-up tips that I would most likely never use. We had fun. In this field, it was as close to a perfect day as we can get. 

     I grew up with that bond with my Grandma. It is one of the richest and most meaningful connections in my life. So much of who I am is because of her so to see that bond begin in others…I can’t put into words how incredibly important to me that moment was. It was beautiful.

     By the end of the day, we all made a plan for her to come over every Tuesday she has free this summer. We brainstormed ideas for outings and the joy was contagious. This. THIS is why I do what I do. As caregivers, we get to be a part of these moments and we know that they are far from inconsequential. There is a lot of shit, both literally and metaphorically, that comes with this gig. Ah but the moments when I get to know that I had a hand in directly impacting another’s day for the better? So worth it! We get to lift people up. We get to fight for something bigger than ourselves. We get to have our lives impacted by others…what’s BETTER than that? It really is a hell of a job perk.

The Belle of the Ball





I watched as my client carefully applied her lipstick, resisting the urge to offer to do it for her. It’s that familiar balancing act between my desire to help and the need to foster and maintain my client’s independence. She looked beautiful.
Tonight was the big event! Her birthday dinner! A night out on the town! All day, we prepared for it. We picked out her outfit and jewelry. I shampooed and deep conditioned her hair. A stylist came over and curled and styled it for her. She would be the belle of the ball!

As we headed to the restaurant to meet her daughters, it occurred to me that this was one of those rare days when the stars aligned and everything went smoothly and everyone was happy. We even made it on time for the reservation.

I watched as the family laughed and bonded over oysters Rockefeller and shared childhood memories. There was such warmth and connection that I had a sudden pang to be with my own family, scattered over so many miles. I was deeply moved to be a part of this celebration.

It was a long night and by the end of it everyone was exhausted, but in a good way. For an entire day, the fact that my client lives with a disability was on the back burner. It wasn’t about her struggles. It was about her beauty. It was about celebrating her as a fantastic mother and grandmother, a loving wife, a wonderful friend. It was a reminder that we are all so much more than the sum total of our difficulties; that life is so much bigger than the challenges that we face. In this field, I call that a victory.

Seeing It




They don’t see it. They just don’t see it and you can’t be mad at them for that because there was a time that you didn’t see it either. I bit back a sigh of frustration and gathered the Valentine’s Day cards that were carelessly discarded on the side table.

      I remember in elementary school we used to hand out valentines. It was exciting, passing out those little personal notes as we overdosed on the chalky, tasteless heart candies. It was a happy memory and maybe the last time Valentine’s Day had any impact on me whatsoever.

       I hadn’t thought of that in years. The memory popped in my head as I watched my client painfully and with great determination sign all the cards that she personally hand-picked for her loved ones. She and my co-worker braved the cold and made a trip to the store the day before; a difficult feat that took most of the afternoon.

       I marveled at her single-minded focus as she carefully wrote each personal note with her one good hand, insisting on doing it herself. It took her forty five minutes. The amount of effort she was willing to put in to show such simple gestures of love and appreciation was so beautiful.

          I saw a quick flash of disappointment in her eyes that was quickly replaced by sad acceptance and a resigned smile as the cards were opened, glanced over and tossed on the table in a matter of seconds. They didn’t see the effort it took or the thought that went into those cards. They didn’t pause to think about the toll it took for her to go out in the freezing weather. Most don’t stop and ponder such things. I didn’t ponder such things.

       It is through caregiving that I have developed another set of eyes; one that sees beneath the obvious, beneath the current circumstance or diagnosis to the person underneath. This new set of eyes reminds me in a million different ways not to take my life for granted and to appreciate the moments that matter. This has been a simple by-product of working in the field. It’s our greatest asset, the ability to see. The world at large doesn’t see, but WE do. It’s up to us to show through our actions what we know. I carefully arranged all of the Valentines cards on the refrigerator so she will know that as long as I am there her efforts will always be noticed.

It’s the Little things

photo ALICE

I can’t believe I’ve only been on this job for two weeks. I unlocked the door to my client’s house, turned on the three lamps in the living room and started the coffee. Already, parts of the routine are becoming muscle memory. Its funny how at home I feel.

Much to my surprise, I am thoroughly enjoying private care. I thought the pace would be too slow. I thought I would be bored. Instead, what I have found is a whole new dynamic to caregiving.

Working independently for families has its challenges. In a facility, it is all about the residents. Meal times were set, showers were assigned and family members were people to greet in passing as I rushed to complete my daily routine. With 32 residents needing care, my interactions with their families were limited by time constraints.

Its flip flopped in private care. The families are inviting me into their home. They are trusting me, not only with the care of their loved one, but also with their house. They are trusting that I will be able to implement a routine that will consistently run smoothly for all involved, that will encourage and stimulate the well-being and quality of life for my client and her family while maintaining professional safety standards. The high level of enthusiasm just comes with the package. That is the sum and substance of my job description. While my client will always be my primary focus, the family plays a much bigger role in accomplishing this in private care.

I plan and cook meals for her family, making certain that there are left overs in case her daughter comes over. It’s a simple task and in doing it my client gets the peace of mind in knowing her daughter will eat and she gets to eat dinner at the table with her husband just like she did when she was physically well.

It’s those moments that bring her the most peace. Mentally, she is sharp as a tack and she has adapted with courage to a life that was dramatically altered in an instant. Dinner with her husband, enjoying a big bowl of ice cream, getting her hair done; these simple tasks bring her such joy because they are the same things she did when she was well. They are about who she is as a PERSON not who she is as a stroke victim.

That is the one thing that is the same in a facility and out; people seem to see the age and disorder instead of the person. As caregivers, we are uniquely qualified to fight this. The very nature of our work is dependent on knowing those in our care. In private care, I am given the opportunity to gently remind those around us that their loved one is more than her doctors’ appointments and obligations. She is a person first and foremost. We do this not with words but with actions. Inside jokes, little compliments, asking cooking advice, simply listening; there are countless ways to let someone know that they matter. Imagine what it could be like if all the caregivers applied the lessons we learn on the job in our daily lives. There would be far less people who feel invisible in this world.


Working Outside the Box




How does a caregiver from North Carolina who went from years of working in one facility to private care to losing her client in the span of two months end up in Long Island? Interesting story…

        I discovered fairly quickly that independent private care was quite a bit different than working for an agency. The family as a whole was much more involved with me as a caregiver than they would have been had I worked for a company. Often we ate together, I took my client out for appointments, the communication was open and honest. It really was a collaboration in order to ensure the best possible care and quality of life. And it was a success! Despite the abruptness of her passing, my client’s last days were filled with fun and family and love. She was genuinely happy and in the process the family and I became close.

         I was somewhat surprised when they approached me with the idea of going and helping them through the funeral. I had been to several funerals of my residents who had died but they were all in the same state. This was in NY. I had my doubts, but my heart said to see this through. My gut instinct said that this would be an experience that could be mutually beneficial on many levels. They needed support and I needed closure.

        “We were hoping you could stay a few weeks and help clean out her house.”…wait. What?! To be fair, they presented me with the idea before the trip up north, but it was still a daunting thought. I had heard all kinds of nightmare stories about the condition of both the house and her son who still resided there. Stories that I later found out were very true.  But they were going to pay me, which took the edge off of the panic of being suddenly unemployed and while I have no experience in cleaning out the house of a deceased person, I knew they felt at peace leaving the task to me. They knew I was trustworthy. After some quick reflection, I decided to take the leap.

        So here I am in Long Island, attempting to do tasks for which I have no framework of experience. I feel equal parts exhilarated and terrified. I have had so many opportunities these past few days to apply lessons I’ve learned in our field in an entirely different arena. Boundary setting, thinking on my feet, communication, multitasking, problem solving, empathetic support, organizing, planning, consistently scheduling tasks, people skills, negotiating behaviors with the brother, efficiency and handling unanticipated situations with solution based thinking are just a few examples of skills that I’ve been using, almost like muscle memory. This completely unexpected situation has been an incredibly clear, if somewhat extreme, example of using what we are taught in the walls of a facility outside in the world because sometimes life is every bit as surreal outside the walls of a facility as it is within them. It’s been a good reminder that sometimes, when the rug is pulled, you just have to take things on faith.

A Brave New World




      One client. For the first time in years, I don’t have twenty or thirty people calling my name. It’s an adjustment. This new adventure comes with its own set of challenges and teachable moments.

       First, the environment is totally different. Sounds like a no brainer, right? OF COURSE it is, Alice! A home verses a facility? Duh! I expected it to be different. I didn’t expect it to be quite as challenging to maneuver around those differences. Small bathrooms. Carpets. Less space. They all require different transfers and tricks in mobility than in a facility in order to keep my client as safe as possible. And I’m learning by doing. It’s much more of a team effort too. In a facility, as much as we like to foster independence, due to time restraints, I had to do the bulk of the work for the residents. One on one care is different. I don’t have to rush and it’s an entirely new pace for me. I have time to learn what my client is capable of doing for herself and with what activities she needs extensive assistance. It’s a very different scope of expectations and I feel a bit like a fish out of water.

       I’m blessed to be working with a family who is both very invested and committed. This is new for everyone involved. It is their first experience moving an ailing loved one into their home and it’s my first experience working within a home. We are all learning this together, which is equal parts exciting and terrifying. There are physical therapy visits and occupational therapy visits. It’s a brand new environment for all of us.

       The woman for whom I am caring is funny, feisty and for the most part oriented to her surroundings. In fact, considering all of the constant changes, she has been handling the upheaval remarkably well. I attribute that to being surrounded by a family that loves her very much.

      Right now is a time of transition for me and that feels overwhelming but I am excited and optimistic about this new experience; both what I can bring to the client and her family and what I can learn from them. It’s very different, but no one ever learns from staying in one space. “Different” may be just what the doctor ordered.

A Different Point of View


Loud voices dragged me kicking and screaming from my sleep; the first solid night’s rest that I’d had in a month. A peaceful sleep is the one thing I’ve got left and they’re hell bent on robbing me of even that.

     My muscles groaned as I rolled over to look at my clock. 7:00 AM. The day people were coming in. I wondered briefly who was on shift before deciding that it didn’t really matter.

“Same shit. Different day. That’s the story of my life these past three years, since I lost my wife. Since I lost my everything.” I thought as I closed my eyes, hoping for twenty more minutes of peace. No such luck.

     “HEYYYYYYY BUDDY!!!! Good morning! Today is going to be AWESOME. You and I are going to hit the ground RUNNING. The world won’t know what HIT it! It’s time to rock and roll!”…Great. It’s the weird one. She must have had a triple espresso today. I squeezed my eyes shut as she opened the blinds, knowing damn well it wasn’t going to fool her.

     “I know you’re awake, pal.” Sigh.

     “It is too damn early for you,” I grumbled. She raised her eyebrow, made sure the door was closed and took out her phone.

       “Maybe. But it’s NEVER too early for Hendrix,” she declared as the first strains of All Along the Watchtower filtered through my ears. Well, I couldn’t argue with her taste in music. I watched as she jumped up on the empty bed (They haven’t paired me with a nut job roommate yet, thank God for small favors) and began to dramatically sing along. Badly. You gotta admire her creativity.

      “Get DOWN, you fool, before you get yourself fired. FINE. Give me twenty minutes to get my bearings and I’ll be up there for breakfast.”

       “Deal!” She leaped down and out the door she went. I try to keep in mind that none of this is her fault. She’s one of the good ones. In another life, she could have been my daughter or my friend, but in this reality, she’s another person telling me what to do, even if she does think it’s for my own good.

       I headed into my cramped bathroom, pulled on my robe and splashed water on my face, hoping to clear away the residual fog from last night’s medication cocktail. I remember when drugs used to be fun. If only they knew the life I used to live. Before I got married. Had kids. Got sick. Lost my wife. Lost my kids. Lost my health. Lost…well, just lost.

         “When did you become an old man?” I asked my reflection. If I squinted my eyes and looked through the wrinkles, I could see remnants of the man I once was. A ghost from the past, hardly relevant in today’s world, where speed is what counts and the old and sick relics are left; carrion for the vultures.   I shook my head and tried to shake that imagery as I headed out the door of my sanctuary into the noisy, overly bright hall.

         “Get your walker!” There she was again, somehow able to see through the enormous stack of towels she was carrying as she ran down the hall.

         “No running in the hall!” I retorted.

         “Fair enough!” She stopped abruptly, tripping over her shoelaces and the stack of towels flew in every direction. I heard her curse under her breath and couldn’t stop myself from laughing. She’s a pain in the ass, but she does make the hall more entertaining.

        “Maybe YOU should get a walker,” I told her. She looked at me ruefully.

        “First point goes to you. Well played, sir,” she said as she picked up the towels. It’s a little game we have. Who can be the biggest smart ass. I usually win. With age comes wisdom.

         “Ah come on, kid. Escort an old man to breakfast. Maybe a cup of that decaf crap you call coffee would do me some good.”

         Breakfast. Rubbery, slightly cold eggs. Grits. Bacon, always underdone. Chaos and noise, everyone demanding everything. Nothing peaceful about it. After breakfast, more meds, then a shower. The same. Every day is the same Goddamn day. I just wanted to escape to my room. I want to lay down and not be bothered.

        We are the invisible people. Congestive heart failure in room 102. Diabetic in 104. COPD, TED hose, two person transfer. We are known by our needs and diagnosis rather than our names and stories. Hello. My name is stage 3 lung cancer. My name is do not resuscitate. My name is dying.

       I laid down and pulled the cheap, rough comforter up to my chin. You would think they would know that we old people are cold natured and offer thicker blankets. I debated pulling the call bell, but I wanted to be alone more than I wanted an extra blanket.   I was in pain. Always in pain. I’d gotten used to it, like an old familiar friend that you never wanted in the first place but after a while, you can’t imagine life without.

       I was awoken from my uneasy rest by a soft, persistent tapping on my door. Jesus, what do they want now?

         “WHAT?!” I shouted. She walked in; the weird one, the annoyingly optimistic one.

         “The new activity lady wants to know if you want to play bingo.”

         “Do I strike you as a bingo player?” I snapped.

          “No. But she insisted that I come and ask anyway. Besides, the winner gets a prize.”

          “Trip to Vegas?”

           “No, a lovely gardening hat with plastic flowers for the ladies and a t-shirt that reads gone fishin’ for the guys,” she paused, “…I didn’t say they were GOOD prizes.”     Something must have cracked in me then. I started laughing. The ABSURDITY of it all; not just the prizes but the very idea that THIS was how I was going to spend the end of my days…in a loony bin being told when to eat and playing bingo for the most ridiculous prizes possible, being visited by my kids maybe one more time before I shuffle off to whatever comes next because it was “too hard” for them to see me like this…it was…it was OBSCENE. Suddenly, to my horror, my laughter turned to tears. I was WEEPING for Godsake. Tears and snot flowed freely down my face as I took deep sobbing breaths and tried to regain control.

     The weird girl handed me a tissue and sat quietly on the empty bed next to me. She let me cry. At no point did she try to calm me or convince me that everything would be fine. She did not minimize my pain. She just sat there and waited. In that moment, I hated and loved her. I hated that she was witnessing my fear and weakness. I hated her for seeing my pain, but I loved her for those very same reasons too; for seeing me in a moment of raw, uncontrollable honesty.

           “I just miss everything so much. I miss my wife. I miss my kids. I miss…myself. I go over it in my head, what could I have done differently. What could I have done better? I don’t want to die alone.” By then I was whispering, afraid that someone else would hear; afraid she would judge me…afraid. After a long moment of silence, she came over tentatively reached for my hand and said,

       “I am so sorry that you’re hurting. I can’t imagine the strength it must take for you to face the day and I’m sorry that your kids are missing the opportunity to see how brave their dad really is. It’s a decision they will come to regret, I imagine. I can’t do much to erase your pain, but I will make you a promise: You will never be alone. I will walk with you step by step; the good days and the bad. You aren’t alone. You’re my friend, whether you like it or not.” She squeezed my hand gently and headed toward the door. There were call bells ringing and she had to go, but I knew she would be back. For the first time, I realized that I took a lot of comfort from that.

         “Hey, kid…thanks”. She smiled back at me.

       “Anytime. Besides, I can’t let you win the smart ass award. I’ve got some catching up to do!” she said as she left the room, quietly closing the door behind her.

     “In your dreams, kid,” I thought, smiling to myself as I slowly drifted back to sleep.

Life Goes On



Edison Terrell

My dad was recently diagnosed with cancer. Acute chronic leukemia lymphomatic scary sounding things that don’t sound like real words. I talked to him on the phone and he related how scared he was, that I was going to lose him and his parents would outlive him. He’s always said it’s a tragedy when a parent has to grieve for their children. And I, in my childishness, never really considered my mom or dad mortal. They’re my rock; his cancer, coming on the heels of recovering from a car wreck that put him in the hospital for almost two years now, crushed me. Now my rock is crumbling, and I’m all kinds of disoriented and listless for it. 

Meanwhile, I’ve got a private client on Tuesday mornings from 10-12. It’s usually no big deal, and we’ve had a good thing going for a month now. Last week he said he wanted me to come on Thursday instead—again, no big deal—but I messed up the dates and forgot to go in Tuesday this week, thinking it was Wednesdays. I took what I thought was a morning off to get some work done and didn’t see my client’s voicemail until that night. I called to apologize, said I’d be there Friday instead, and everything was cool.

I got this message from his wife today: “Hi Edison, I am just wanting to confirm that you will come over tomorrow for J and then go back to the regular Tuesday 10AM schedule.”

Then she added: “When a handicapped person relies on a caregiver, he often ‘panics’ when the caregiver is late. That is how J gets. So please do continue to call to notify him if you are ever running late.”

Embarrassment—shame, really—hit me like a freight train. Followed immediately by thought-blocking anger. Didn’t she know I felt bad enough from my profuse, groveling apology when I called Tuesday night? No, she had to take another dig at me, make me feel worse before I had to leave for my other job, piss me off and leave me with nothing, no one, to turn my anger on. I turned it on myself and her ghost.

I started to write a reply, ignoring her advice (How dare she, anyway? Does this chick know how long I’ve been an aide? Honestly? Really?), just “I’ll be there,” but decided it wasn’t enough. I deleted it and wrote another draft, taking her apart line by line, ending with “This is going to be my two weeks. Your husband is fifty-five-frickin’-years old; he’s a big boy. He should be able to take change by now, and if he can’t, it’s not my problem.”

I didn’t feel any better to get it out, but the thought of hurting and confusing them, like their message did me, was delicious.

Before I could hit “Send” I was cut down by a glimmer of insight, an ugly, rancid bit of compassion I hate so damn much: How would I feel in J’s situation? If I was practically paralyzed on one side and had to set aside a chunk of my day just to get a shower and not be told it wasn’t happening. I’d be confused, and hurt, and probably angry at my time being wasted. I really, really didn’t want to let that in.

I want nothing more right now than to make people hurt as badly as I do, when I feel like doing anything. As a kid that would’ve been an option, sort of. I could be moody and isolate myself, simultaneously wishing for someone to come check on me so I could break open the shell, wishing for them to check on me so I could lash out at them, and wanting to be left alone forever. I was a child for a very, very long time. But now I’m an adult. I’ve got a family, and clients that need me. Bills to pay, food that I have to buy myself, and worst of all I need to grow up. I really don’t want to do that. I want to be vacillate between selfish cruelty and dejected neediness. But I can’t do that. Life goes on even when we pause and feel like it won’t. And I like my client. He’s a good guy, I don’t want to lose him, either.

Sometimes that’s what caregiving is: pushing forward. Owning up to your mistakes, acknowledging the deep hurt and listlessness, but moving forward anyway, cuz life goes on and you’re still needed. 

Daddy Don’t



Only 45 minutes left in my shift, and for first time, I’m not counting the minutes with a mix of dread and relief. I’ve only been an aide for a few weeks and I finally feel like I’m catching on. The physical stuff is becoming muscle memory and that’s freeing up energy to focus on the mental aspects. It’s the first shift in which I don’t feel like I’m drowning; the first shift in which I think: maybe this is for me.

I’m doing my nightly rounds when I hear loud voices coming from a room across the hall. The ladies who live in that room are usually quiet, so I hurry over to see what is going on. In my rush, I saw but did not comprehend the sad look thrown at me by the nurse.
In the room, one resident is awake, wide-eyed and clutching her blankets tightly. Upon seeing me, she pointedly looks over at her room mate. No words leave her lips; none need to. She looks worried, but also irritated, like this isn’t such an uncommon occurrence.
The other occupant of the room is still asleep, her eyes darting about underneath her eyelids. Dreaming, then. Or maybe not. She’s crying in her sleep, great fat drops leaking from the wrinkles around her eyes. She’s talking, too, her voice rising and falling in a mostly-incomprehensible babble.
I wish it was completely incomprehensible…because I can make out two distinct words, repeated over like a nauseating refrain to a horrific song.
“Daddy don’t.”
This isn’t something I was prepared for. In my CNA course, nobody told that I’d have to witness the nightmares of my residents, have to stand next them while they relive the worst moments of their lives. Why isn’t this something we are warned about? Why isn’t this a facet of long term care we talk about?
Before, the people I was taking care of were little old ladies and sweet old men in my head; the Greatest Generation aging gracefully.
I feel like I’ve run smack into the revelation that whatever else they are, my residents are people first. Not always cute characters from a Norman Rockwell paintings, not always caricatures from nursing home abuse commercials, old people in wheelchairs, neglected and dejected…but always people. People who lived, and yes, people who suffered.

I don’t know what to do. I feel like I should report this–but what’s the point? This lady is in her 90s, “daddy” is long dead, as are all the people who turned a blind eye to the abuse.
I do the only thing I can think of: I wake her up. She’s startled and begins yelling at me. It’s mostly for my own sake that I sink down on the floor beside her bed and hold her hand until she falls into a peaceful sleep. Or at least, a sleep that is free from screaming nightmares.
I finish my rounds late, again. But this time, it’s not because I couldn’t figure out how to roll a resident and tuck a brief at the same time. The nurse tells me I did a good job, both during the shift and during the “incident”. I suppose I should be proud of that, but I can’t get my mind out of that room long enough to think about anything else.
My notations of what being a CNA means and what a CNA does have been drastically altered. I go home and go to sleep with only one thing decided: I hate that man whose sins still have the power to torment his daughter all these years later. Once a little girl, now an old woman; always a person.