A Caregiving Story

We have lived in our house for 16 years and have raised three kids and countless animals in it.  It is a modest-size home but seemed gigantic to us when we first moved here because we were coming from an apartment.  An apartment which had the girls (who were pretty little at the time) crammed into a room together, literally having to walk on top of their beds to get to the other side of the room.

Walls by Caty and Chris

Once we moved into our own home, we took advantage of being able to paint!

The kids each had their own bedroom but shared a bathroom (which was really fun when they were teenagers). 

Things weren’t perfect but the house was filled with love, laughter, animals and noisy arguments (I told you – things weren’t perfect.)

At some point, the kids wanted to paint the bathroom but couldn’t come to a consensus on a color.  The girls wanted to help paint (Christopher, not so much) so we let them pick a wall and their own color and design.

Wall by Rachel

It was important to me for them to develop their independence as well as their creativity and to   know that hard work gets them what they want. 

The girls got creative: Rach picked a bright orange and then painted green palm trees on her wall; Caty chose a midnight blue with gold stars and the moon sprinkled throughout. Christopher chose a very dark lime green and wanted it simple – no design. He also wanted the smallest wall so he wouldn’t have to paint much.

Christopher obviously didn’t get the memo about hard work.

We had a great time creating the bathroom and it stayed in this hodge-podge of bright colors, not exactly matching, for several years.

The kids are now all in their twenties and have moved out and I finally admitted things can’t stay the same forever.

I did try to keep the bathroom the same and kept finding ways to justify it:

“It makes me happy to remember the kids when they were little.”

“It looks fine to me.”

“I’m not a fan of change.”

“I don’t know if I can tackle the challenge of repainting right now.”

I finally realized things seemed a little off in the bathroom.  It wasn’t as clean as I thought it was. The paint was showing its age. I was starting to wrap my head around the idea of needing a change. I broached the subject with the kids.

They had no qualms about us repainting.  They even seemed to welcome the idea. 

It took a while to make the final decision to repaint and when I did, I told myself I wouldn’t do it all at once. I could take my time to paint – I didn’t want to rush into anything or take on more than I could handle.

My first step was to prepare for the job.  I knew preparation was one of the keys to success.  Before starting, I thought about it for a long time. Is this really what I want to do?  Is Richard able to help even though he has his back problems?

Once I made the decision to repaint and Richard was on board, I dove into it. I decided on the color (Richard had a little bit of input) and I started preparing the room.

I was still determined to take my time and finish the bathroom over several weekends.  I didn’t want to overdo it. I didn’t even know if I could do it all at once.

I set these self-doubts aside and prepped the room with tape.  I created a list of supplies we needed and one Saturday we visited the hardware store. We got everything we needed to do the job. Primer (lots of it!), paint (“Cool as Cucumber”), brushes, pans, and more brushes.

Keeping costs down was important to me since, well, we’re not independently wealthy. I needed to repaint the room without going broke.

Adding accessories

Once I had the paint in my possession, my plan to move slowly with the process was out the window. I wanted to get this room done! My gut was telling me that it would work out and that I was up to the challenge.

I hauled ladders upstairs to the bathroom. I set up a standing fan because I knew I would get hot painting the enclosed room in the middle of summer.  I remembered my water because I knew it was important to take care of my needs while painting. 

Putting on the primer was the most time-consuming but it was worth the effort. While I climbed onto the ladder and stepped onto the counter I caught a glimpse of myself in the mirror. I’m not as young as the last time I painted nor am I in very good shape but I can still maneuver my way to the far reaches of the bathroom ceiling corners.

I was extra cautious though because I knew I couldn’t afford to hurt myself. Who would finish the job if I couldn’t? 

Of course, things never go as planned so there were times I was cranky because I was doing too much or being critical of myself of how I was painting. 

Thankfully, I had Richard to help me.

Happy with the "new" room

He gave me advice (when I asked for it), ran back to the store for more brushes and helped take care of the other things around the house I was neglecting.

There were plenty of things I didn’t have time for while painting and never really felt like I was giving one hundred percent to anything while tackling the bathroom. Even while painting, I thought my attention should be elsewhere.

But I was driven to finish the job.

I wanted this bathroom to look the best it possibly could. I didn’t want to look back and have any regrets about how I recreated this small space of our home into what I had envisioned and hoped for.

I wanted to make this bathroom the best it could be.

When I finished painting, I had great fun putting the finishing touches on the room: pulling shelving and artwork from other parts of the house to both save costs and to make the most of what we already had.

Once I was finished, I saw there were touch-ups that needed to be made and a few imperfections in my work but I knew I had the tools to fix these problems and tried to not let these color my overall positive view of my painting experience.

I may have my moments of frustration while painting but am thrilled with the end result and am confident I made the right decision to paint. The bathroom looks wonderful and I know that underneath the new paint are years of memories of the kids when they were little. 

Those memories will always be a part of the bathroom and of me - no matter how much primer I had to use! 

No, You May NOT Make a Suggestion

My husband is a wonderful co-caregiver. We make a terrific team and it warms my heart to see Robert look at Richard with respect and admiration. I appreciate his help more than he will ever know.

But sometimes I want to strangle him.

Through thick and thin - we are a
great team!

Our morning routines are scheduled down to the minute.

Because of Richard’s back pain, he’s usually up by 4:30 a.m. (after a fitful night’s rest).

I wake up at 5:15 so I have a few minutes of me time (okay, time to go to the bathroom, pet the dogs and cat and throw on a sweater) before waking up Robert and giving him his meds at 5:30.

Richard makes breakfast for the dogs and Robert (and rarely mixes up the two).

He also packs a lunch for Robert and makes me a mocha which is greatly appreciated! Isn’t he awesome?

I strip the bed and start laundry then help Robert with his bath and hustle him to get dressed. He gets more meds at 6:00. Richard goes upstairs to shower and get dressed.

I work at wearing out the puppy and try to read a few emails.

By 6:40, Robert is heading to the dining room table for breakfast and Richard is back downstairs.

My turn to get ready for work. I run upstairs while Robert eats breakfast and reads his Jeopardy question of the day from his day calendar.

By 7:15 Robert needs to be back in the bathroom to brush his teeth and, if there’s time, shave.

Oh, yeah, there are more meds at 7:15.

The van arrives anywhere between 7:40 and 7:50.  Usually Robert is on the couch by then, dodging the puppy and working his Word Search.

There is very little wiggle-room built-in. I could wake him up earlier than 5:30 but then we run the risk of him not getting enough sleep which could increase his seizures.

On a recent morning, Robert needed to use the restroom before the van arrived. Oh boy. You have to be quick, I remind him.

I run back upstairs to finish getting ready and when I return, I know there’s a problem.

He’s still in the bathroom and it’s 7:40. This can’t be good.

I open the bathroom door and immediately know there’s a problem.  I tell Robert not to touch anything. He touches his protective brief.

DO NOT TOUCH ANYTHING!

I grab new briefs and shorts and hope his shirt is unscathed (it is, thank goodness).  I ask Richard to ask the van driver if he’ll wait a couple of minutes while I clean Robert and get him dressed again. 

Richard offers to instead drive Robert to Day Program. 

No, I’m sure the driver will wait a minute. I just have to get Robert cleaned up.

I get to work wiping and cleaning.  I need more wipes; Richard brings them to me.

Robert is finally all cleaned up so I help him put on his briefs. We use two briefs on Robert so he doesn’t have as much leakage and right now I’m in too much of a rush and rip the first one as I pull it up. 

Crap (pun intended). 

I grab another brief and start over.  Richard tells me the driver said he could wait.

Awesome!

Then he says, “May I make a suggestion?”

I have a garbage can full of messy briefs, gloves and wipes, I’ve been rushing around to finish quickly and I’m still trying to get the briefs and shorts up and Robert out the door.

My eyes say, “CAN YOU MAKE A SUGGESTION?! HAVE YOU LOST YOUR FREAKING MIND? I’M UP TO MY ELBOWS IN POOP, HERE, SO NO, YOU CANNOT MAKE A SUGGESTION!!”

My mouth says nothing.

He makes his suggestion and I think I’m going to lose my mind.

What’s funny (now that several days have passed) is every other time I help Robert get dressed, I do it the way Richard suggested (put on both briefs and shorts all at once and then pull up). I do it that way every single time.

Except this once. 

Now (since several days have passed) I can appreciate the help he did give me that morning.

Since several days have passed, I can again remember how grateful I am for him and for being the best co-caregiver I could ask for.

But, no, you may not make a suggestion.

It’s still too soon.

You’ve Got Mail!

Robert loves to get mail. 

The first inkling I had of this is when I took over his care and realized he had several magazine subscriptions paid through the next century (and that’s only a slight over-statement).  

Robert happily reading his mail

Magazines about hunting, fishing, celebrities, wild animals and architecture covered his coffee table (and bookcases and couch and floor . . .). The only logical explanation is he loves to get mail (and obviously has hoarding tendencies).

When he lived at New Home, several people asked for his address so they could send him a Christmas card.  He saved these in a pile on top of his dresser through the holiday season and Valentine’s Day and Easter and summer . . . and into the next holiday season. (They are now in a box with a few other things he wanted to save.)  

The mail he gets at my house is from Social Security, SSI (as in, “Hi! You owe us money!”) and doctor’s offices. I open that mail since I am his representative payee and take care of his medical appointments and finances.

The Saturday mail was delivered and there was an envelope addressed to Robert from Other Brother. I had one too but I was expecting it and knew it was business-related. I assumed Robert’s envelope was a copy of that letter (for whatever reason) so opened the envelope.

Yes, I committed a federal offense in opening Robert’s mail (shhh! Don’t tell!)

I saw immediately it was a personal letter so folded it back up and placed it back in the envelope. (Well, okay, I read it - hey, how could I help it?)  Robert was coming out of the bathroom and once he sat down and was settled, I handed him the envelope.

You got a letter.

“Oh?”

Yep. It’s from Rich.

Robert slowly took the letter out of the envelope and carefully unfolded it. (He didn't question why the envelope was already opened.)  He put on his reading glasses and looked at the envelope, back at the letter.

Robert looked up at me with a huge grin on his face: “It’s from my brother Rich.”

Why, yes, it is.  Isn’t that pretty neat? (I was tempted to clarify that Rich was my brother, too, but bit my tongue.)

“It’s excellent!”

I watched as Robert read the letter, smiling throughout.  Rich told him about watching old home movies and seeing a dress Robert had bought for Rich’s daughter for her first birthday.  Robert giggled when Rich told him how cute Jessica looked in the dress and told me, “That’s good she looked cute.”

Robert continued to read and chuckled some more. He looked up and told me that Rich likes Rocky Road ice cream too, but only eats it every two months!

“I like Rocky Road ice cream.”

I think he wanted to make sure I didn’t get any crazy ideas about giving him ice cream only every couple of months so made sure to remind me he likes Rocky Road ice cream.

When he finished reading the letter he looked up at me with a big grin, chuckled a bit, and said, “That was nice.”

He then carefully folded the letter back up and tucked it back inside the envelope and set it on his table.

Where it will stay for as long as he’d like.

Now that is pretty excellent.

Guest Post: Caregiverlist Summer Photo Contest

Robert has lived in three facilities since I took over his care. He was first in a Skilled Nursing Facility due to a life-threatening infection and the need for long-term intravenous antibiotics.

Then I made the difficult decision to place him in an Assisted Living Facility.  Since that wasn’t the best fit, I moved him to a residential facility (aka, New Home). 

Guest Post from CaregiverList.com

He now lives with us because I think that’s the best fit for him but I am well aware of the importance of professional caregivers.

At each facility, there were shining examples of staff truly caring for their patients. (There was the CNA who changed a man’s protective briefs with great respect and explained to me it was important she do that because she knew people didn’t choose to be in that position. There was the staff member who made sure Robert’s sheets were changed daily even though it was – unbelievably - not in Robert’s care plan. There was another staff member who played cards with Robert and also kept me apprised of any potential problems with management or the house nurse.)

I made sure to notify management of these wonderful employees who went above and beyond in caring for not only Robert but the other residents/patients as well.

I am happy to share information about a contest recognizing professional caregivers such as these great people. Please spread the word and nominate your favorite professional caregiver! Thank you to Caregiverlist for the contest and this guest post.

Caregiverlist Summer Photo Contest Awards Gift Certificates and T-Shirts

Share Your Photos and Be Entered to Win + Vote for the Winner

Caregivers provide much more than just assistance to seniors, often becoming the emotional support for their senior clients as they continue to confront the process of aging.

Caregiverlist, the career and training center for professional senior caregivers, announces a summer photo contest to honor professional caregivers. Caregivers, Certified Nursing Aides, and Certified Home Health Aides may submit a photo of themselves with a senior client to the Caregiverlist Summer Photo Contest for Senior Caregivers. The contest starts Monday, July 8, 2013, and runs through Saturday, August 31, 2013. Winners will be announced before Labor Day. The Caregiverlist Facebook page hosts the contest.

Contest winners will be chosen based on popularity via voting. Caregiverlist will award $100, $50 and $25 Amazon gift cards to the top 3 voted pictures and free t-shirts to the runners-up.

Photo submissions that feature some creativity and uniqueness will bring competition to this contest. Caregiverlist expects that the caregivers, Certified Nursing Aides and Certified Home Health Aides who submit “fun” photos will gain more votes. Those who submit photos should share their photo across social networks and with friends and family to encourage more voting.

Caregivers may submit their photo on Facebook and vote for caregiver and senior photo submissions here.

Caregivers also may always submit a job application on Caregiverlist to be considered for part-time, full-time and live-in caregiving jobs and find online caregiver training.

Good luck!

On Pneumonia Watch

I am not an alarmist. I think I’m pretty practical and level-headed. Even a realist when warranted.  

He may look happy in the hospital
but I'd like to keep him out of there!

With Robert, I do have to be on alert with his health since he can go from having a slight cold to the ICU with pneumonia and septic shock in a matter of hours. 

Well, we’re at the “slight cold” stage.

Yesterday, he had a little bit of nasal congestion and a slight cough.

Today, he also had diarrhea and more nasal congestion but the cough stayed about the same.

He had an unusual seizure at Day Program so they called me. The seizure lasted about a minute but his breathing was labored and he trembled like he was very, very cold. The staff has had Robert for over two years so recognized this was an unusual seizure (I LOVE his Day Program staff!).

This is very similar to the seizures he had before his last bout of pneumonia. 

Richard picked Robert up from Day Program since I was still at work.  Of course, that didn’t stop me from texting instructions to Richard (oh, my husband must love me so!).

“How’s his breathing?”

“Put him on his oxygen.”

“Please take his vitals.”

Robert had a slight temperature but it was normal by the time I got home. His breathing was labored even though Richard had put him on the oxygen as soon as they got home.

I took his vitals before dinner and they seemed fine except his pulse rate was high. (That was a problem when he was sick last time.) He is still weak and talking like he’s out of breath but the pulse ox meter says his oxygen level is at a good rate.

Robert didn’t lose his appetite and still wanted his usual amount of food at dinner as well as a scoop of Rocky Road ice cream.  (How can I refuse when he’s sick?)

I don’t understand why he has had pneumonia twice in eleven months and why it appears he’s headed there again.

The doctors are looking into the causes but it is slow-going.

We have to wait until mid-September to see a pulmonary specialist. His Upper GI Endoscopy finally happened a couple of days ago and only showed slight inflammation. Per the doctor’s instructions we doubled up on his prescription strength Prilosec. She didn’t express any concerns whatsoever.

I sent a note to his doctor to see if there’s anything we can do besides watch him like a hawk, regularly take his vitals and take him to the hospital at the first sign of a downward slide. I don’t want to be too late in catching whatever is working on him.

(What’s odd is the hospital never seems to be able to grow any bacteria even though the x-rays show pneumonia. They call it aspiration pneumonia but I don’t know how or why he gets it and why it develops so quickly and seems to immediately send Robert into septic shock).

So we’re on pneumonia watch tonight but I’m hoping by morning he has recovered and is feeling as good as new.

I may be practical, level-headed and a realist but I’m above all, an optimist. 

“It’s Important I Shave Too”

This shaving business is getting out of control.

Robert had his upper GI Endoscopy today which meant, even though we had to leave the house at the same time he normally leaves, he couldn’t eat.  This bought us some extra time so I let him sleep in a bit.

Once he was up, he got his bath and got dressed.  I relented and helped him with his socks so we could make it to the appointment on time. I needed to get ready, too, so asked him to brush his teeth while I showered and got dressed.

“I need to shave too.”

Okay, sounds good.  We’ve got half an hour so you have time to brush your teeth and shave.  Just please brush your teeth first.

“It’s important I shave too.”

Oh goodness.  I don’t know why shaving became so important but it is Robert’s new favorite past-time. Before he moved in with us, shaving was more than an hour-long process.  He used a regular triple-edge disposable razor complete with shaving cream and aftershave. He’s a little on the OCD side so had a very meticulous process which took forever to complete.

When he first moved in to New Home, he showered and shaved in the morning.

That lasted, probably, two days. He kept missing the bus.

I finally convinced him (and New Home) to shower him in the morning (because he usually wakes up wet) and to shave at night.

That worked. Most of the time.

One of my first purchases when he moved in with us was an electric razor. No need for after shave. No more cuts (even though he always declared, “I didn’t cut myself shaving” no matter how many spots of red were on his face).

This purchase literally shaved an hour off of his bedtime routine. (Oh yes I did use that pun!)

I don’t know when it happened but all of a sudden he had to shave every time he went into the bathroom. I mean, Every Time.

Sometimes more than once in the same visit.

I would walk by the bathroom and see him looking in the mirror and feeling his face with one hand, razor in the other.

Apparently, he has started growing facial hair at the rate of Chewbacca.

If he feels any kind of stubble, he grabs the razor. (A friend suggested I get him a small razor he can carry with him. I’m afraid it will interfere with his quality of life if I do that. All other activities will cease.)

I have half an hour to get ready to get out the door. I’ve already packed his “just in case bag” and packed my bag with his medical information and a few work projects. I need to shower and dress – if I can do that in half an hour, he can brush his teeth and shave.

“It’s important I shave.”

Robert, I understand it’s important to shave.  However, it’s more important we make it to your appointment on time and I need to get in the shower. Please brush your teeth and shave AFTER you brush your teeth.

He stared at me.

Robert – I need you to tell me you’ll brush your teeth first and then shave.

More staring.

Robert!

“Okay.”

I ran upstairs to get ready in record time and came down to Robert still sitting in the bathroom. He looked done.

Are you ready to go?

“Yes.”

Did you have time to shave?

“Yes."

Great! Let’s get going. The bag with extra briefs and clothes is already in the car; my work/medical info bag is in the car too. I grab my purse; Richard corrals the dogs and helps us to the car.

We are on schedule! Woohoo!

You brushed your teeth and shaved, right, Robert?

“Um, yes, I did.”

It dawns on me that he did not brush his teeth.  I just knew it.

You didn’t brush your teeth, did you? 

Long pause.

“No.”

But you shaved?

“Yes, I did.”

Argh!

Thankfully, there’s a toothbrush and toothpaste in his “just in case bag” so he brushed his teeth at the hospital while we waited for him to be called back for his test.

I handed him his toothbrush and toothpaste and waited for him to finish. 

He looked in the mirror while brushing and I know what he was thinking:

“I really need to shave.”

Could You Please Help Me?

Robert was done with his bath and getting dressed.  It’s Saturday so we were not under a time crunch to get ready in time for the van to pick him up and take him to Day Program. It takes a very long time for him to dress but I have found a variety of helpful tools to help keep him dressing independently for as long as possible.

Tying his shoes were next to impossible so one of his occupational therapists gave him elastic shoelaces; (awesome & cheap!)

Buttons became too difficult so I got him Velcro-close shirts (thanks to Buck and Buck Clothing!); 

Jeans (his winter staple) became too difficult to button and zip (no matter the size of the jeans). Back to Buck and Buck for Velcro-close jeans. Pull up shorts and short-sleeve Velcro-close shirts became his summer wear.

His belt?  He couldn’t quite get the metal hook to close and stay closed so Richard found him a Velcro-close belt; (Thank you George de Mestral for inventing Velcro!)

Robert is usually very independent when dressing and all of these pieces of adaptive clothing have helped keep him that way.

This morning, though, as I checked in on him in the bathroom, he sat with only his protective briefs on and a confused look on his face.

His shorts were on the counter;

His socks were tucked neatly in his shoes;

His shirt still hung on the door knob;

“Could you please help me?”

What do you need help with, Robert?

“It seems I can’t put my socks on.”

Hmmm.  Well, it’s Saturday so we have plenty of time to get dressed.  How about you try?

“I tried but it seems I can’t get them on. Can you do it?”

Robert moved very slowly last week and I helped him with his socks on a few days. If I hadn’t, he would have been late for his transportation to Day Program. We were cutting it pretty close as it was.

Today he has all the time in the world. I’m not telling him to hurry up or hiding his razor (his favorite thing to do now is shave – multiple times a day).

How about you try one more time?

I watched as he struggled to use one arm to put on a sock. For some reason, he only uses his left arm when dressing.  I suggested he use the other arm too.

Use both hands!

Grab both sides of your sock!

Good job!  You got it over your toes!

Pull it over your heel!

Lift your foot!

Use both hands again!

Pull hard!

You can do it!

Pull it all the way up now!

That’s great – you’re getting it!

All of a sudden I became a drill sergeant coach.  All that was missing was a marching band and cheerleaders. 

He got his sock on but he was exhausted.

One down, one to go.

After a short break, he got the other one on much more easily.  Shorts, shirt and shoes were a breeze after those pesky socks.

He was rewarded with a leisurely breakfast and the satisfaction of completing a task himself.

While he does have a tendency to want others to do things for him even if he can do it himself (a habit he picked up from our father), I want him to maintain his independence as long as possible.

If that means coaching him while he puts on his socks, then sign me up.

Somebody get me a whistle and a clipboard – I think I can get used to this coaching gig!