Thursday, April 25, 2013

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. 

Tuesday, April 23, 2013

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.


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!


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? 

Saturday, April 20, 2013

Counting My Blessings

A week ago Friday, Robert woke up with a temperature of 102, difficulty breathing and unable to sit up without assistance.  EMTs were called, Robert was taken to the emergency room and diagnosed with septic shock and pneumonia.
Robert is happy to be home from the hospital

The night before, he was slightly congested and had a temperature of 99 (which the hospital wouldn’t even classify as a fever) but, other than knowing how infections take hold of him quickly, there really was no indication he would be as bad off as he was.

It came on that suddenly – much like last May when he was also hospitalized with pneumonia and sepsis.  This time, he landed in the ICU, his fever spiked to 104 on night two and we were told he was “pretty sick.” 

After only one week, Robert was released and came home to enjoy both a Double Chocolate Chip Frappuccino from Starbucks as well as a scoop of Rocky Road Ice Cream after dinner.  (I know it isn’t the healthiest way to celebrate his homecoming but, hey, it makes him happy).

It was a long week of running between the hospital, work and home but there were lots of opportunities to be grateful.  

1.      I am grateful Robert now lives with us full-time.  This recent illness progressed from mild to severe so quickly, I don’t know if New Home would have been able to get Robert to the hospital timely. Because of their location, even if they did send him to the hospital, it would not be the one his GP and neurologist are affiliated with.  Having access to as much medical information about the patient as possible is extremely important, especially during a crisis like this.

2.   I am grateful for the emergency medical personnel! The fire department and EMT response to our 911 call was fast and efficient.  These guys are awesome!

3.    I am grateful for the flexibility given to me at work and for my employer providing paid sick days.  I was able to go into the office for a few hours each day then do some work at the hospital as well as handle questions or problems via email or phone.  It was a relief to know I have this flexibility, that I have supportive and caring partners (who frequently asked how Robert was doing) as well as not having to worry about not being paid for missing work. Not all working caregivers have such a luxury.

4.       I am grateful for my animals! It was a welcome stress reliever to come home at night and have two labs and my cat snuggle up with me at night.  They don’t leave me or my husband a lot of room on the bed but you can’t have everything!

5.       I am grateful Robert is such a good patient! He is polite and tells all the nurses, “God Bless You” when they leave the room.  (Last year in the hospital, all the nurses thought he was saying, “I’ll miss you.”).  Either way, they think he’s a sweetheart.  Just don’t interrupt him when he’s in the middle of finding a word in his word search book . . .

6.      I am so, so grateful for my family.  Other Brother and Oldest Daughter visited Robert (and me) which perked us both up.  My darling mother-in-law has a special bond with Robert and as soon as he made it to a regular room, she visited – with a gift and a card in hand.  Robert grinned from ear to ear with each new visitor. (It's amazing how helpful visits are in the healing process.)

7.       I am grateful for the caregiving community of  What a supportive group!  I had people emailing and texting me during Robert’s hospitalization, many of whom were participating in the WAIT Buddy program (anyone can sign up and it’s free!).   

8.      I am grateful for my husband.  Richard was calm throughout Robert’s ordeal and was more than willing to be at the hospital while I was at work (a necessity since Robert wouldn’t be able to tell me if the doctor had come in or what they said).  Richard continued to work his own job (which, thankfully, is phone-based so he could take calls at the hospital) and he took care of the animals since I left very early in the morning and didn’t get home until much later than normal.  He made Robert laugh during every visit and he even put up with me when the stress and my weariness made me a little cranky (just a little).

9.       I am grateful to have Robert home from the hospital.  He still has terrible chest congestion but his vitals are good. At least he’s home and moving around which should help him continue to improve (home is a much better place to recuperate – hospitals are full of sick people!).  We’re keeping a close eye on him and continuing to check his vitals (yeah, just call me Nurse Trish) but he seems to be getting back to his old self.  He and Taz have to remember how to get along with each other (Taz is still in the “I want to be right in your face checking out everything you’re doing” phase and Robert is in the “leave my food and chocolate shakes alone” phase).  I'm sure they'll work it out. 

It’s been a while since I have shared what I am grateful for and Robert’s recent hospitalization gave me a wonderful opportunity to be reminded of what is important.

What are you grateful for today? 

Thursday, April 11, 2013

When Things Are Too Much

“I was wondering if this would be too much for you.”

A friend, Denise Brown, recently asked me this but she wasn’t referring to caring for Robert.  She knows Richard and I can care for Robert and that bringing him into our home was the right decision for us. 

She was referring to an interview she asked me to participate in.  Denise had invited me on her show to discuss working and caregiving with a panel of other working caregivers.  (The show airs Friday at noon Pacific and can be watched here).   

Unfortunately, both working and caregiving got in the way of doing an interview about working and caregiving!

Richard and I are easily settling into a routine with Robert much as we did when we blended our families and raised three kids together.  We have our rough spots but the best thing we do is work well as a team. 

In the morning, I get Robert up, washed and get him his medications.  Richard makes decaf coffee for Robert and a mocha for me (costing Starbucks a small fortune in the process).  He prepares Robert’s breakfast and packs a lunch for Robert as well.  By the time I’ve finished helping Robert get ready for the day and he’s eating breakfast, Richard has showered and dressed and is able to keep an eye on Robert while I get ready for work. 

The night time rituals are split evenly as well and we even get to spend quality time watching whatever crime show has our interest at the moment (for now, it’s NCIS).

The routine goes smoothly until The Universe decides to pile on.  Remember when I thought I was being tested?  Apparently, the test has extra credit now.  

Last weekend, Richard was put on bed rest because of a complication from his chronic back pain (his legs swelled up enough to make his knees disappear and make his legs look like mid-size tree trunks).  A few days before that, I had a dental procedure go horribly wrong and was in excruciating pain for days.  I have a high tolerance for pain (I gave birth to my daughter without using pain meds and pride myself in taking only one pain pill after my appendix was removed).  Actually needing pain medicine so I could function was a shock for me and one I fought valiantly against. 

I had to give in – the pain was too severe.   (Thankfully, my pain is finally getting better which I can attribute to either my mouth healing or the wonders of pain meds). 

In the midst of missing some work for the dental appointments, dealing with pain, worrying about hubby’s gigantic legs (and throwing in an afternoon off to take Robert to a neurology appointment as well as watching Robert’s cold come back), I was working on several projects at the office with deadlines this week.

The interview on Friday was looming and even though I could do it over the lunch hour, I was concerned I wouldn’t be able to finish a project that is due Friday. 

I reluctantly bowed out but cringed when Denise told me she wondered if this would be too much.  She didn’t mean anything negative by it – she just has no idea how neurotic I am.

I don’t want to admit anything is too much!  I can do it – I mean, really, I could.  My thinking is unless I am completely incapacitated, I can make it happen. 

I certainly don’t like saying, “I can’t” because it sounds to me too much like, “I have failed.” 

Is that really true, though?  Maybe it’s okay to say, “No, not this time” without it meaning failure. 

Maybe it’s okay to say, “This is too much” even if I’m still standing.   

Sometimes, there is a reason things happen and things end up working out for the best.  What was just a little congestion all week and even up until a few hours ago took a terrible turn tonight and Robert is now running a fever, coughing and wheezing.  It’s actually a relief that I declined the interview (although, obviously, I couldn’t have known Robert would be getting this sick at the time).

Maybe The Universe is testing me but maybe it’s also trying to help me out. 

Even though I won’t be discussing working and caregiving with a panel of talented men and women, I will be doing some working and caregiving and hope to be able to join them in their discussions next time. 

(Please keep your fingers crossed for Robert – let’s hope this cold doesn’t get any worse).

Monday, April 8, 2013

What?! Wait! I Have to do Math!?

My biggest concern about moving Robert in with us was the responsibility of his medications.  Will I be able to keep them in stock? Will I remember to give them to him at the right time? Will I be able to organize his refills and keep the Day Program stocked with Robert’s mid-day medications as well?

Robert's Spreadsheet of medications
I worried because if Robert doesn’t get his meds on time or if he misses a dose, the consequences are extreme (increased seizures which result in increased falls which lead to injuries).    

The concern I didn’t think about: I’d have to do math!  Yikes!

Don’t get me wrong – I can do math.  I have a college degree although it is in psychology, not math.  (Other Brother, on the “other” hand, does have a degree in math from a prestigious university.) 

Other Brother is also an actuary and partner in a multi-national actuarial firm.  When we were kids, our dad would randomly give us math problems and Other Brother was always the first one with the correct answer.  (I could eventually answer the question but it took me a while; Robert was usually chasing bugs or frogs and didn’t pay attention long enough to answer).   

So I can do math, I just have to r-e-a-l-l-y think about it when I’m doing it.

I created a medication spreadsheet and was grateful to other caregivers for giving me advice on what information to include.  During move-out day, I carefully counted the medications Old New Home gave me.  Once home, I put this information on my spreadsheet. 

I counted how many days I had left with the medication they transferred to me.  I counted the number of days left until the refill date the new pharmacy had given me.  There are nine medications to keep track of, each one with a different number of pills to be given at various times of the day.  To complicate things, the pharmacy changed one medication from a 1 mg dose to a 2 mg dose (which doesn’t matter since he gets that medication in 2 mg increments but it does mean more math for me).

My plan is to fill his medication containers each Saturday with one week of pills.  The first time I did it, I needed complete silence in the house for concentration and counted, checked, re-checked and then updated my spreadsheet.  I added, subtracted, multiplied, wrote numbers on scraps of paper, consulted the spreadsheet and threw in some calculus and geometry for good measure (okay, I kid about that last part). 

I checked everything again just in case.

It took me close to an hour (in part because it’s impossible to keep this household full of dogs, cats, a husband and Robert quiet for very long). 

This past Saturday went quicker.  The math is getting easier and I’m feeling better about the medication issues (and I don’t insist on quiet).

There are still a few bugs to be worked out – one of Robert’s medications couldn’t be filled at our pharmacy because, for whatever reason, Old New Home had filled it at their pharmacy.  (Um, heads up to Old New Home: Robert doesn’t live there any longer!). 

I checked with Day Program and they have enough medication to last at least two weeks.

Robert doesn’t have his emergency medication (Ativan) because Old New Home realized it was expired so they didn’t give it to me.  Robert sees his neurologist tomorrow so I’ll get a new prescription for that.

Thankfully, my worst fears have not been realized but at least I was prepared for them.  Preparation and asking for help from others who have done this for a while were essential to being ready. 

That and having a calculator . . .