Kindness – Every Little Bit Helps

It is sometimes difficult to believe in the goodness of the human race when there is such evil, violence and despicable acts splashed across most news sites.

A fond memory of mom

It can be difficult to see the goodness even for a Pollyanna like me, especially if I’m feeling under the weather – which I am due to a dental implant gone wrong.  As my daughter succinctly pointed out, I have become one of “those” stories – the horror stories people repeat to each other about medical procedures gone as wrong as you can imagine.

Here I am on pain medication and antibiotics with a raging infection in my mouth, swelling in my jaw and on a forced diet because I can only open my mouth wide enough to fit in the tiniest bits of a peanut butter and jelly sandwich (on the softest bread possible and absolutely no crust because even that is hard to chew).   

I guess pizza is a bad idea for dinner tonight.

I’m trying to get some work done from home today but it’s difficult to avoid the news.  The situation in Ohio is nothing short of horrific which is one reason we want to crown a hero.  People want to balance out the evil – let’s see some good!  Yay!  The women were saved by someone not afraid to get involved and not willing to ignore screaming from the neighbor’s house.  We have a hero! 

Then, for some odd reason, we want to dig up all the dirt possible on this man.    

Guess what?  People are not perfect.  People make mistakes – big mistakes (and, believe me, spousal abuse is a big mistake).  These mistakes cannot define a person, however.  These are pieces of a person’s life – some good, some really awful. 

I really don’t know anything about Charles Ramsey other than he, along with Angel Cordero, is credited with helping Amanda Berry escape her tormentor.  That is kindness.  Their efforts go a long way toward restoring our faith in the goodness of humans.  Maybe it even helps him make peace with his past mistakes. 

It’s such a simple concept: Be kind.  Spread kindness.  Do something kind for someone.  It doesn’t have to be huge because the ripples of kindness go beyond what we can even imagine. 

I believe people want to be kind.  Everyone wants to make a difference – to have an impact and to find a purpose to being here.  When my mom was dying of liver cancer, she struggled to know what her purpose had been.  She wasn’t famous or even outgoing but she was kind.  While she wondered what her purpose was, she tipped the cashier at the McDonald’s drive-thru.   She packed a bag full of groceries out of her cupboards when her daughter was struggling as a single mom.  She even threw in a box of dryer sheets because her daughter thought it was too extravagant to spend $3.50 on dryer sheets when every penny counted.

Throughout her life, Mom had also been depressed, suicidal and drank too much boxed wine.

None of these pieces of her solely defined her.  She was made up of kindness and a complicated life and poor coping skills.  In the end, it was her kindness that won out. 

We visited her favorite beach before she died and she made friends with a small boy who decided Mom was the one person on the entire beach he wanted to share his starfish with.  She spent time with him and made that moment on the beach memorable for me, watching my mom exude kindness.   Who knows how that kindness rippled through the boy’s life (or mine)?

 These small bits of kindness add up and make it easier to believe in the goodness of people. 

Let’s find the goodness and kindness in ourselves and share it with the world.  Even in bits as small as my peanut butter and jelly sandwich. 

Happy Mother’s Day, mom!  Your kindness is missed. 

Discombobulated

I love the word “discombobulated.”

Only a moment of peace -
do not be deceived

Just hearing the word conveys its meaning: confusion.  The word bounces around your mouth as if in a state of confusion itself.  Whenever I say it out loud it takes so long to say that I have time to wonder if I’m going to pronounce it correctly.  I have a moment to wonder when I’m going to get to the end of the word (I wonder the same when I am actually in a state of confusion). 

Will it ever end?

I’ve been feeling discombobulated lately and even though I know the feeling will eventually pass, that I will once again enjoy the comfort of routine, I wonder when it will happen.  How soon will I be able to establish new routines that I’m comfortable with and can count on? 

Some people don’t mind chaos and not knowing what’s around the corner.  I prefer to know exactly what to expect, when to expect it, and if it’s a problem, how to solve it. 

Some people call that being a control freak; I call it comforting.

When I am feeling discombobulated, I can physically feel the chaos in my body.  My nerves bounce around in my stomach, head and chest and my temper is triggered more quickly.  My patience wanes and I find myself getting easily frustrated about thing that normally don’t bother me. 

It’s only been just over a month that Robert moved in and we are working on developing new routines.  He needs help getting clean and staying clean, medications need to be organized, ordered and dispensed.  We don’t have an extra bedroom for Robert so the sofa sleeper needs to be pulled out each night and put away each morning (and since he’s incontinent there’s a lot of laundry in between - even with him wearing briefs and using lots of pads).   

There are habits that Robert has picked up after years of living independently and then in a facility setting and not knowing any better and we’re working on changing some of these bad habits.  These are things we have worked on when he visited over the weekend but were difficult to get them to stick since he lived elsewhere during the week.

These are habits that are important for him to change so that he can be more accepted in a social setting (like learning not to blow his nose at the dinner table) or for health or safety reasons (like knowing to ask for help when he uses the bathroom). 

It’s actually not that much extra work but my mornings are now filled with getting Robert ready for the day and making sure the puppy gets his play time instead of reading the news or other blogs or writing.  Part of my day is also spent teaching the puppy to stay out of Robert’s personal space and teaching Robert that hitting a puppy out of frustration is not okay (no matter how many times he tries to lick the straw of his chocolate shake or share his lunch).  

Thankfully, Hubby helps with Robert’s morning routine and gets his breakfast ready and makes a lunch for him to take to Day Program and I use that time to get ready for work. 

Moving to our house from the Board & Care was a big adjustment for Robert and for the first week, he had several seizures. Robert doesn’t like change either.

The extra seizures started to subside but less than two weeks after moving in Robert was in the ICU with pneumonia and septic shock. 

Talk about feeling discombobulated!  Running from home to the hospital to work and back to the hospital again completely disrupted routines at home and work.  Even the dogs were discombobulated and had a few accidents in the house while we were away. 

Robert recovered and was home after a week but his motor and personal care skills took a hit.  The routines we had established in the short time he was here before being hospitalized had to be recreated.  Robert and the puppy had to get reacquainted with the rules of getting along.

My stress started to show and I was more than a little cranky.  Even Robert was showing signs of stress.  

The discombobulation (yes, I made that up) seemed to want to take up permanent residence. 

Quite discombobulating for a control freak comforting-routine-seeker like myself.

I know I have to have patience.  The routines will come.  I will again find time to read my favorite blogs and websites.  I will again have time to write without sacrificing sleep.  I even think the puppy and Robert will eventually get along (they may not be best buddies but I do believe a peace accord is possible!).

I do see hope on the horizon.  My head realizes it’s only been a month – and a month which included a week long hospital stay at that!  My heart is still feeling a bit discombobulated but here I am writing which feeds my heart and soul.  I’m finding time to watch favorite shows with my husband.  I’m enjoying my time with the puppy and, of course, our good/more laid-back lab.  I am refueled with visits from my daughter and the occasional shoe shopping excursion. 

My husband gave me a moment of clarity at dinner last night when he asked Robert what he liked about living here since he had been here for a month. 

Robert thought for a second and responded, “It’s comfortable.” 

Now it is possible Robert was just talking about the sofa sleeper but it’s also possible he’s telling us he’s no longer discombobulated.   That he is happy living with us. 

It might take me a little longer to get there but I’m reaching for “comfortable” too and have faith I will get there. 

TMT: Too Much Time (Together)

Richard and his mom coined the term, “TMT.”

Since Richard is his mom’s primary caregiver, they spend a great deal of time together going to doctor appointments which are usually an hour away or during her hospitalizations for surgery or heart-related issues.  All this time together can get on their nerves and they both know when they are at their limit.  When that point comes, they look at each other and one of them will say, “TMT.” 

"My watch is excellent."

Too much time -- together. 

This simple phrase signals a time-out for both of them whether they are in the car or at the hospital or doctor appointments.  After their brief cooling off period, they are back to their usual joking, laughing and sharing ways. 

This weekend I called “TMT” with Robert.  A week-long hospital stay, much of it in ICU, stressed us both out and it showed the day after he came home from the hospital. 

We arrived home Friday before lunch and had a relaxing day.  Robert was pretty ripe from lying in a hospital bed without a bath for a week, so I got him cleaned up and dressed in some comfortable clothes.  At the doctor’s suggestion, we continued taking vitals and encouraging Robert to cough.

“Encouraging” could easily be interpreted as “nagging.” 

I’m pretty good at nagging (just ask anyone I work with or who I am married to).

It didn't help that his motor and personal care skills took a nosedive (but are getting better and closer to baseline each day).  It also didn't help that he and Taz had to get reacquainted with one another.

Do you need help changing, Robert?  Let me get you cleaned up, Robert. Taz is just being friendly, Robert.  Cough, Robert.  Get the congestion out.  Blow your nose, Robert.  You’re going to end up back in the hospital if you don’t, Robert.  How do you feel, Robert?

Sheesh, I was getting sick of hearing myself.  Plus, his balance was off so I was literally hovering to make sure I was nearby in case he fell.  By Saturday, Robert was sick of my hovering and my questions nagging and yelled at me, “I feel excellent whether you like it or not.” 

“I feel excellent.”  This was Robert’s answer throughout his hospital stay.  Never mind the pneumonia, hypoxia and septic shock.  Robert was convinced he felt excellent.  I love his positive attitude but being a terrible self-reporter is not helping his health any.  (Another good reason the doctors and nurses need to listen to caregivers). 

I continued to take vitals but I backed off on the questions.  Contributing to the stress, I had to take Robert’s watch away in the hospital because it was apparent it was way too tight.  It was an inexpensive watch with an expandable band but it couldn’t be adjusted to be any larger.  Robert was very irritated that I wouldn’t give him his watch and repeatedly asked when we could get a new one.  I promised to take him on Saturday if he was feeling up to it.

“I feel excellent.”  Of course he does.

I packed up the wheelchair since Robert was still trying to get his strength back and off we went to JC Penney where I knew he could sit and try on watches.  I repeatedly told him he would have to get one that fit better than the last one.  He was convinced it would fit perfectly.  I explained a perfect fit to him might actually be too tight.  I told him it had to be a little bit loose.  He gave me “the stare” which is what he does when I’m starting to get on his nerves and repeated his belief the new watch would fit perfectly.   

My crankiness was increasing and all I could do was hope we would be able to find a watch that would be tight enough to satisfy Robert without cutting off his circulation to satisfy me.

My afternoon was definitely not excellent. 

We got to Penney’s and looked at the watches.  Robert wanted a gold watch – a “14 karat gold” watch.  I don’t know why but that’s always what he wants.  I just looked for the gold color watches and told him it was 14 karat gold (yes, I lied.  Sorry but I was at the end of my ability to negotiate). 

The nice sales clerk showed us a watch with an expandable band that could be made smaller if needed.  Robert tried it on and it fit perfectly.  I couldn’t believe my eyes – it was slightly loose to satisfy me but tight enough that it didn’t move around a lot to satisfy Robert. 

How do you like the watch, Robert?

“It is excellent.”

Relief! The sales clerk cut off the tag, set the date and time and handed it to Robert to wear immediately. 

I took a minute to buy a couple of things for me and then wheeled Robert over to get him a few more casual sweat pants that he can wear while he continues to recover.  He laughed and joked and was generally in a much better mood. 

Once we were home, there were a few more instances of us getting on each other’s nerves but nothing some good sleep, getting back to baseline and a TMT time-out or two won't cure. 

Things really are starting to look a little more excellent. 

Dos and Don’ts for Medical Professionals: A Caregiver Perspective

I am very grateful for the care Robert received in the hospital last week but, unfortunately, there were varying degrees of attentiveness and competency.  Much of his treatment and care was wonderful and appreciated but there were a few instances that left me scratching my head (or addressing the problem immediately).

 

Robert doing his Physical Therapy

I don’t dispute the stress doctors and nurses must be under with their long shifts, the hospital bursting at the seams with patients and the high ratio of patients to nurses and doctors but do believe there are a few things that could improve.  Admittedly, these suggestions and experiences are based on one week-long visit in one hospital but I suspect these could be universal.

DO:

1.     Acknowledge the caregiver.  The most welcome question I received all week was, “Are you his caregiver?” Yes!  Yes, I am! Thank you for asking!  I’m sure my face lit up when asked this question because it indicated to me this was someone who knew the importance of the caregiver and the vast amount of information I may have about Robert’s history and his “baseline” behavior and health.  Unfortunately, the nurse who asked this only cared for Robert toward the end of his stay.

2.     Keep the medication schedule the same.  This is a tough one because I know it creates extra work for the nurses but I think it is critical in patient care.  Many of Robert’s meds are written as “3x day” but he is on a very specific regimen for various reasons such as certain drugs shouldn’t be taken with other drugs and some meds need to be taken with meals and some thirty minutes before a meal (another reason my checklist comes in handy!).  We have a very specific schedule we follow at home and if the goal is to get the patient well and to solve whatever medical mystery they currently have, why not keep as many variables the same as possible?  Robert was extra lethargic during his hospital stay – was this because of the pneumonia, his lack of activity or the medication schedule being changed?  The change for Robert wasn’t even consistent because he got moved around a lot.  It all depended what floor he was on and what the nurses were willing to do.   

3.     Communicate with the family.  During Robert’s hospital stay last May, I was familiar with each member of his medical team (Robert goes to a teaching hospital so there are a group of doctors who see the patients).  The doctors were communicative and available and answered every one of my questions.  This time, perhaps it was because Robert started in the ICU or because he was frequently moved to new rooms, but it was next to impossible to talk to his doctor.  In the ICU, I learned to eavesdrop on the team who would discuss his case in the hallway outside his room.  The doctors were all terrific but they rarely came into the room or gave me time to ask questions about what was going on.  Once he was moved to a regular room, I actually had to have the nurse ask the doctor to call me since I never saw her.  Aside from one day when I had to see the dentist, I was always at the hospital before 7:00 a.m. The rounds were supposed to be between 7:00 – 9:00 a.m. but I only saw the doctor once and that was on the day she released Robert.  Any information I did get was from asking the nurses or when I insisted on a phone call from the doctor. There may not have been anything new to tell me but I don’t know that if someone doesn’t tell me!

DON'T:

1.       Make assumptions.  As much as computers are helpful in having the patient’s medical history available as well as what treatments and medications have been given, mistakes still happen.  Twice I had to stop a nurse from giving Robert medication because he had already taken it.  Once, the ER nurse was ignoring what I was trying to tell him and he gave Robert an extra dose of Depakote (and then tried to blame me).  Another time a floor nurse was covering for the regular nurse who had left for break and she tried to give Robert the same medication he had been given an hour earlier.

2.      Play musical beds.  Robert was first in the ER on Friday and was transferred within hours to the MICU.  By Monday, he was moved to the telemetry floor (where they still continuously monitor vitals).  He was moved twice more before being released.  I was told numerous times the reason for the constant moving of patients is because the hospital was packed.  If the ER was full, they had to make room for those being admitted.  Patients were wheeled from room to room on a daily basis.  The downside to all this moving is the nurses do not get to know their patients which can hinder their ability to see a subtle change in health. 

3.       Say, “As I’ve already told you.”  Really?  Maybe I’m repeating the question because you didn’t answer me the first time or I didn’t think you understood my question so I rephrased it or gave you additional information.  I heard this from the difficult ER nurse and from the doctor assigned to Robert.  It’s arrogant and dismissive – please stop saying it.

While I try to be a helpful and grateful caregiver working on behalf of Team Robert, I would appreciate it if the doctors, nurses and hospital remembered we are on the same team.  After all, we have the same goal: a healthy patient and to be able to go home. For the most part, the care Robert received was, as he says, "excellent."  There were many, many caring nurses and other staff which was most appreciated during this stressful time.  These suggestions are meant to be just a little fine-tuning! 

What are your dos and don’ts for medical professionals?