Sunday, January 26, 2014

Break Out the Tiny Violins

I’ve been having a pity party (don’t take it personally if I didn’t invite you).  Thank goodness it’s almost over, though – I am running out of refreshments.
Before the Pity Party
So what’s been my problem?

It is a very busy time at work – this is the usual “extra busy” time at work (there are the “busy” times and then there are the “extra busy” times).  It starts around November and ends once January is over.  Then it is back to a normal busy time.

This year was the first time we had Robert living with us during the extra busy time at work.  The routines with Robert: getting him ready to go to day program, managing his medications and numerous doctor appointments, taking his vitals every day to be on the lookout for pneumonia, doing 10,000 loads of laundry a day and yes, even another hospitalization, are relentless.  These things do not change.  I can’t tell Robert, “Hey, I am going to be busy for the next three months so please clean yourself, make your meals, take yourself to the doctor, wash your bedding and, oh, don’t get pneumonia.” 

Now that we have been through it (well, almost – I have two more days before my final project for this period is completely finished), I know that it can be done. 

It wasn’t without challenges, however. 

I didn’t manage my stress well and ended up with a racing pulse and failing the first of two cardiac stress tests (try that sometime – it will really stress you out!).  I finally passed so all is well but it definitely gave me a wake-up call to stop thinking I could just get through three months of not taking care of myself. 

My attitude didn’t help.

I was thrilled that Richard and I had a respite time in November and were fortunate to be able to go on a relaxing and fun trip. Of course, anyone who works knows how vacations affect work: you have to pack in a week’s worth of work before the vacation and then an extra week’s amount of work afterwards.  I think the ratio is for every week of vacation, you pay for it with two extra weeks of work packed into one.

It is okay – it was worth it and I am already hoping for another trip next November!

Back to my attitude: For whatever reason, I was feeling sorry for myself.  Woe is me – I am busy at work, I am busy with Robert, I am busy with a year-old puppy.  I have a husband who helps but who has his own pain and sleep issues and is so used to me handling stress well that he doesn’t really know what to do with Cranky Trish.  Except to join Cranky Trish with Cranky Richard.

It should come as no surprise to me that Robert has become Cranky Robert.  He has become obstinate, demanding and irritable. Who wouldn’t when surrounded by other Cranky People? 

All this crankiness makes everyone more cranky.  It’s as if crankiness takes on a life of its own and perpetuates itself with bad attitudes all around: we all feel justified in feeling cranky.

I finally began to claw my way out of the hole I dug (part of being in that hole includes not writing which makes me even crankier).  Richard and I started coming up with solutions:

  1. Stop nagging Robert so much (many times it is necessary, however, in order to get him ready for the van on time or to an appointment); 
  1. Sleep in separate rooms (temporarily – that lasted a week and helped tremendously);
  1. Once a month, take Robert to the respite facility he was in during our vacation. He goes for one Saturday a month and only during the day (not overnight). They have the capacity right now, Robert loves it because they dote on him and Richard and I get time together. I would rather pay for a whole day once a month instead of help for a few hours through the week. A whole day gives us all more bang for the buck.
  1. Find relaxation techniques and use them. I pay for a monthly massage but don’t always use it so have a lot saved up. I have made a promise to myself to go twice a month until I have used up the extras. And I’m doing it.
  1. Write.  This helps both of us – Richard has his own blog he started last year and it’s important to him to write about his pain or caring for his mom. We both need to write and need to help each other find the time to do so.
Richard and I are also finding our humor again which can make the crankiness quickly go away.

The pity party is about over and while I know better than to promise I will never have one again, at least I have some ways to get out of it a little more quickly instead of just suffering through it.

Cranky Trish is about to leave the building so, please, help speed up her exit by playing those tiny violins. 

This pity party is winding down!

Sunday, January 12, 2014

Drastic Times Call for Drastic Measures

Winters are a stressful time at our house. 
Pain: Give me my husband back
Richard, (aka, hubby), has increased back pain due to many factors: the cold weather, the extra activities from the holidays, the increased stress due to the holidays and, of course, the denial that the pain has increased. Not to mention not remembering this happens Every. Single. Year.

For my part, my job is extra stressful from November through January.  Year-end projects are a nightmare and ever since getting appendicitis a few Januarys ago, my co-workers and I joke that I lose body parts during year-end.  Add in the stress of the extra activities (yes, I know, I bring on a lot myself with my wild ideas about holiday decorating), and, of course, the denial that the pain my husband feels has increased.  Not to mention not remembering this happens Every. Single. Year.

This year, we have the additional responsibility (which, yes, is stressful) of caring for Robert in our home. We haven’t yet experienced a full year of Robert living with us so we’re still working through routines, helping with his ADLs (activities of daily living), keeping him well so he’s not in the hospital or dealing with his hospitalizations (three since he moved in).

Oh, yeah.

I also flunked my stress test which meant having to do another, more intense stress test which really stressed me out. 

Richard’s pain keeps him up at night and going months without a decent night sleep is stressful on everyone. He has tried sleeping pills which are not working; he has tried meditation which doesn’t make him calm or sleepy; he has tried staying up all day without napping but that only makes him crankier because he still can’t sleep at night. His doctor is going to have him do another sleep study but who knows when that will be scheduled.

Even though I can generally sleep through anything, his restlessness and periods of wakefulness throughout the night is starting to wear me out.  It is taking a greater toll on Richard, of course, but we both need him to get some sleep.

I wake up every morning knowing he is in pain (him bending over in pain and moving extra slow are a couple of clues).  I wake up knowing that he barely got any sleep yet I persist in asking, “How did you sleep?” 

Either I am an optimist or a glutton for punishment but I have no idea why I ask this other than I just want to hear that he slept well – for once!  

I want Richard to sleep.  I want his pain under control – after all, we went through a horrible ordeal in September due to something that is supposed to keep his pain under control. 

It isn’t and I demand a refund!  (Insert stomping feet and screaming tantrum here.)

Okay, it’s not that easy but shouldn’t something that can possibly put his life at risk be more effective?   We’re afraid to stop using the intrathecal pain pump (I say “we” because we’re in this together) because of the exponential pain he feels without it. 

Yet, he uses it and still has extreme pain. And stress. And lack of sleep. All causing more pain.

It is a terrible, terrible cycle – one which I can’t seem to change but am wracking my brain for ideas. 

Today, I took drastic step #1: I got a massage and a facial to deal with my own stress level.

Today, I also talked with Richard and told him I was taking a drastic step to see if it would help his sleep.  Because if he gets some sleep, his pain will eventually lessen which will lessen the stress we’re under because of this awful pain.

Drastic step #2:  Tonight, I am taking my pillows (and the dogs) to the room down the hall so that Richard has the best shot possible at getting some sleep. 

It’s a drastic measure and not a permanent one but I do hope to hear a different answer to my question, “How did you sleep?” (See above re glutton for punishment.)

The answer won’t be different after one night.  It might not even be different after several nights.  But we need to try anything at this point. 

The pain needs to get under control. 

I’d love to hear what you’ve done when you’ve come to the end of your rope.  What have been your drastic measures? 

Tuesday, January 7, 2014

This Stress Test is Stressing Me Out!

I don’t like being the patient.  When I am in the doctor’s office for Robert or Richard, I ask questions, I persist in finding answers, I think of myself as a collaborating with the doctors to figure out the best course of action to solve a problem.

When I am at the doctor for myself, I turn into a bag of marshmallows.  Not even the mini ones – one big bag of giant marshmallows. I can barely utter three words that make sense. Or that are actual words.

I have no idea why this happens but after confessing this to some caregiver friends, many said the same thing happens to them.  We can be tough as nails for our caree but when it comes to caring for ourselves – we’re scared little children.

Today I was the patient and I was determined to be as much of an advocate for myself as I am for Robert or Richard.  I put on my advocate hat and pretended I was caring for someone else.

My appointment was for an echocardiogram stress test since I apparently flunked the stress test I had just before Christmas.  The whole reason for having the stress test in the first place was because I had been experiencing intermittent chest pains and light-headedness. 

Since August.

Then September got busy and busier and October was filled with respite preparations, November took us on a trip and so the stress test got scheduled for December 16.

December 15 Robert was admitted to the hospital for pneumonia so I rescheduled my appointment.  I finally went on a Sunday, three days before Christmas. 

I couldn’t believe my luck in getting a Sunday appointment since we weren’t only busy with the holidays but work is extremely busy at year end and I didn’t want to miss any more work.  I didn’t particularly want to miss any shopping or wrapping time either but I had to get this done. 

Once at the appointment, I made it clear that the stress test was stressing me out.  I wanted them to know that if my blood pressure was high that I blamed the test.  Plus, I don’t really have time for this sort of thing but I wanted to be sure the chest pains and light-headedness (which still happened on occasion) wasn’t anything serious.

The test was easy enough (although I found out I am allergic to latex – good to know).  While running on the treadmill I had an inclination there might be a problem when the technician stopped the test sooner than he told me we would stop. 

Then he told me to wait in the waiting room while he consulted a cardiologist.

The only question I could mutter was “do you always consult with the cardiologist?” He answered that he did most of the time.  Then told me to go to the waiting room.

Did I ask any more questions?  Noooooooo.  That would have been too easy.  Was I freaking out?  Just a little. 

I dutifully went to the waiting room and sat until the nurse came out to tell me that I needed to contact my doctor as soon as possible the next day and to schedule a follow up test. 

He rattled off two types of tests, neither of which I remembered nor wrote down.  (You can bet I would have had my notepad in hand writing down these tests if I was with Richard or Robert at an appointment.  Heck, I didn’t even have my notepad with me!)

I managed to state there must be something wrong but the nurse just reiterated to contact my doctor the next day and said the cardiologist would be talking with my doctor.  He said the follow up test was “just to be safe.”

Oh, okay. 

Then I left.

Of course, as soon as I got into the car, I had all kinds of questions.  What test is it? What are they looking for? What did they find?  Was my blood pressure too high? 

And I thought I was stressed at the beginning of the appointment!

After emailing my doctor (and getting a message that he was on vacation for the next two weeks), I talked with a nurse the next day.  I grilled her about the results of the stress test but all she could tell me was that there was an abnormal reading that could indicate a blockage. 

Oh, is that all.  Ack!

Now, keep in mind, I come from a long line of over-reactors.  I don’t panic and I can usually keep a very cool head but I have an imagination that you wouldn’t believe. 

Let’s just say I researched the procedure for inserting a heart stent. 

More than two weeks later I had my follow up test which, as it turns out, is an echocardiogram stress test. I did my best not to stress out about the test but it wasn’t easy.  I sat in the waiting room listening to Adele, hoping her music would lower my blood pressure.  I read work emails and quickly realized that was not the best plan for reducing my blood pressure.

Before the appointment, I promised myself I would put on my advocate hat and ask questions. I brought my notepad with me. I had a speech prepared for the nurse that this was my health and I wanted answers today so if she can’t tell me something she will have to get a doctor. 

It was a good speech but I didn’t have to use it.

The technician was a wonderful young woman who told me her grandfather’s inspiring life story when I asked about a tattoo she had on her wrist.  She was kind enough to use paper electrodes when I told her my suspicion about being allergic to latex.  She explained the test to me and even retook my baseline blood pressure when I told her that it was so high because I was stressed about the test.  (The second reading was still high but better.)

The nurse came in and also thoroughly explained what was involved in the test.  She was tough, though – she said I couldn’t stop the exercise bike even if my legs were hurting and I was out of breath.  I asked about my first “failed” stress test and she assured me that this test would reveal blockage if there was any.  She said many women had false positives on the standard treadmill stress test which was an immediate relief.  I was able to see the pulse rate and blood pressure readings during the test which somehow was reassuring.  The nurse and technician continued to be supportive and answered all of my questions without hesitation.

Once the test was over, the nurse told me it was clear there wasn’t any blockage.  She said my blood pressure was high under stress and to follow up with my doctor about that but I felt so much better.  I explained my caregiving situation and she nodded knowingly and said to manage my stress with meditation or other methods.

It was not easy to get into advocate mode for my own appointment but, for me, I have to pretend I am there for one of my carees.  I have to prepare questions ahead of time, bring along my notepad and trust that I can talk intelligently about my own health with the healthcare professionals. 

I am not only part of a healthcare team that takes care of Robert and Richard but also me. It’s not easy to remember but it’s important that I do. 

My health is important too.

What is difficult for you about advocating for your own health?  

Wednesday, January 1, 2014

Hello, 2014!

Boy, am I happy to see you!  I don’t want to offend 2013 but between us, I am happy to see 2013 go. 

I mean, 2013 had its good moments but it also had its challenges.  Lots of challenges.  Wow, lots and lots of challenges. Let’s just say the countdown to 2014 was more about saying goodbye good-riddance to 2013 (not that I actually made it to the countdown but I made it to countdowns in Eastern Time, Central time – even Arizona time. Pacific Time: sorry, I failed you.)

2014, I have high hopes for you!  Not that there’s a lot of pressure to live up to my expectations.  Heck, I’m really only asking for a few more laughs, a little less stress and lot fewer hospital visits.

Sheesh – how hard can that be?  Robert was hospitalized twice – wait, no that’s three times – for pneumonia. Almost forgot his pre-Christmas hospital visit for pneumonia.  This was the visit in which the ER doctors didn’t really think he had pneumonia so recommended a lumbar puncture to check for meningitis. I almost lost my confidence as Robert’s advocate but had a supportive nurse who reminded me I knew Robert better than anyone and since this was his fourth bout in about a year and half and I know how these things progress, I refused the lumbar puncture. It was a relief to have the head of Robert’s team of doctors validate me the next day by calling me a “healthcare hero” and acknowledging that pneumonia is a clinical diagnosis, not an x-ray diagnosis.

Well, 2014, I guess 2013 wasn’t all bad – I can thank it for rebuilding my confidence and reinforcing my advocacy skills.

Ahh, but, 2014, you should know that I do not like surprises. Apparently, 2013 didn’t get that memo and threw me for a loop when one afternoon I got a garbled call from my husband telling me he was in the hospital.  After a flurry of worry and activity, I found out he was not only in the hospital but in the ICU and had been there all day – without a call to me from anyone except the patient! Fortunately, the accidental overdose of Fentanyl given to Richard (medication which was meant for his intrathecal pump), didn’t kill him. A few days in the ICU with an antidote and he was back to himself, albeit more wary of this device which has considerably decreased his pain level over the years. 

2013 may have given me a surprise or challenge or two (or several), but gratitude seemed to be the word of the year. How could it not be?  My husband survived an overdose that came very close to killing him. Robert survived three bouts of pneumonia – all of which sent him into sepsis and one in which his blood pressure plummeted to 85/36 and his heart rate sky-rocketed to 125 and his body went sailing into septic shock.

Robert has survived sepsis before but the seriousness of the septic shock was not lost on me. The nurses scrambled furiously to get a central line in and the ICU nurses told me several times he was “very sick” which is code for "he was close to biting it."  No kidding.

I am not only grateful my husband survived his overdose and Robert survived his infections but that Robert moved in with us. Richard and I weren’t completely ready for Robert to move in (heck, he still doesn’t have his own bedroom or shower) but I couldn’t ignore my gut telling me to get him moved in with us. Two weeks after moving in is when Robert was hospitalized with pneumonia and septic shock. I can’t help but think if he hadn’t been with us, his facility would not have reacted quickly enough for him to survive.

2014, I’m not trying to be overly dramatic but given the history with New Home and their level of service – it’s not a huge stretch to be grateful Robert was with us and not them.

Oh my gosh, 2014! Don’t forget about the vacation. A cruise to the Bahamas with family and friends, giving me the opportunity to meet many members of my extended caregiving family! 

See, 2014?  2013 wasn’t all bad after all! It was a challenge but it gave me many reasons to be grateful, many opportunities to hone my advocacy skills and even a relaxing and laughter-filled vacation with family and caregiving friends. 

I will happily say goodbye to 2013 but what I appreciate about you right off the bat, 2014, is the hope you provide. There is hope for a year with opportunity and possibilities and dreams to come true!

I don’t expect you to do all the work, though.  I won’t sit back and just wait for the good times to walk through my door.  I am willing to do the work to make great things happen. I have the courage to hold on to my confidence and use it to advocate for both Robert and Richard.  I have the drive to find ways to ask for help and hire help in order to reduce my stress level so my own health doesn’t suffer.  I have the dream to write more and find a home where Robert will have a room and shower of his own. I have the love for my husband to help ease the pain he still has and to encourage him to follow the dreams of his own.  

What I ask from you, 2014, is to continue to offer hope for the fulfillment of these goals, for encouragement to keep going when I fall short of succeeding and for giving me a fresh new day full of possibilities each and every morning!

Welcome, 2014!