Thursday, May 23, 2013

There’s Always Tomorrow

Newsflash:  Sometimes caregiving is fulfilling and sometimes it’s a pain in the you-know-what.

For someone who loves order and routine, I have learned am learning that these wide swings can be over the course of a month, week or day.   

Even moment to moment. 

Since moving Robert to our home, my husband and I have had challenges but we’ve had some really memorable moments with Robert too.  

It’s those moments of laughter and, for me anyway, routine that can sustain us through even long stretches of difficult times. 

These difficulties are not because Robert moved in with us because, as even a casual reader here knows, I had my difficulties when Robert lived in a care facility. 

Caregiving is caregiving no matter where your caree lives.

This past week presented challenges but it also had moments of pleasant surprise. I see glimpses of routine!  Some people may not like routine but I seek it at work and at home. It provides me something to count on and a sense of peace. As much as I love the word discombobulated, I loathe the feeling of it. 

I see Robert looking at Richard with respect and watching how he does things, seemingly making a mental note.  I see bad habits we’re trying to change in Robert go by the wayside.  I see progress with habits much more difficult to break. 

Knowing Robert is wearing clean clothes and is changed and kept clean as much as needed is a huge relief.  I see an improvement in Robert’s health (knock on wood).

I see light at the end of the tunnel. 

This is what a week on the way to “normal” and "routine" looks like:

Last Thursday

Robert’s GP suggested he see a pulmonary specialist since he’s been in the hospital twice in the past 11 months for pneumonia.  She wrote the referral and said to call in a few days to get the appointment.  I waited more than a week because I know how these things go.

My first call was to the clinic where I wanted the appointment and was told the referral was written for another clinic and to call them.

My second call was to that location but was told there was no referral and to call the central referral line.

My third call was to the central referral line.  They  told me they don't handle pulmonary referrals and to call office #2. After explaining I already did that, she took my number and said she will have office #2 call me back.

It’s been a week and I just today was able to get the appointment with the pulmonologist.  I gave up on my preferred location and am just happy I got an appointment. 

Thursday night:

Robert had a seizure and ended up on the floor (as much as we try to keep Robert seated or catch him when he falls, it’s not always possible – falls happen). He came out of the seizure with me, Richard, Taz and Oz on the floor with him. Instead of his usual confusion, he woke up giggling.  We must have been quite the sight! 


Richard stayed with Robert while I went to a yoga class in the morning with my daughter.  It was a studio we hadn’t been to before and we fell in love with it!  I was relaxed and rejuvenated. 

The middle of the day was filled with the not so fun stuff: multiple seizures, falls, hubby and I not communicating well and Taz (aka Crazy Puppy) and Robert not communicating well.

The evening was much better and was spent on the patio with Robert and I watching hubby play ball with the dogs. There was ice cream and laughter involved which helped soothe the rough spots of the day.


While I was outside with the puppy working on a writing project (and trying to tire the little maniac), Robert was just inside watching Wheel of Fortune. Every time someone solved a puzzle, he said, "That's good she solved it." Or if they go bankrupt, he would declare, "That's too bad he went bankrupt." He loves to give a running commentary during game shows!


While making dinner, I glanced over and saw Robert's hand moving. I assumed he was having a seizure (he sometimes tugs at his clothes when having a seizure) but saw he was petting Oz! Granted, Oz is our 8-year old, CALM lab who had walked over near Robert but until now Robert hasn't initiated petting any of the dogs. This is progress!


A birthday dinner out was planned for Richard’s mom but she became sick in the afternoon and by evening needed to be taken to urgent care (she is back home now and on antibiotics).   The upside of the evening is my daughter was over and was able to tire out the dogs and keep them out of Robert’s hair!


It was a hectic morning at work made even busier because I had to leave early to take Robert to a bone scan appointment.  Thankfully, Richard picked Robert up from Day Program which saved me from having to leave even earlier! Once they were home and Robert settled on one couch and Oz on the other. Robert looked over at Oz and, good-naturedly said, “Good afternoon, Oz.” 

I picked Robert up from home and took him to the appointment.  We were back in time to have pancakes for dinner! 

(We also just ended the evening with an earthquake! Luckily, there are no reports of damage but it was disconcerting to have the chair move beneath me. Robert and the dogs slept through it.)

There is definitely light at the end of the tunnel.  Early in the week a friend reminded me of a favorite quote:

"There's a great big beautiful tomorrow shining at the end of every day."

The beauty of this week is its normalcy (except that earthquake, of course) and the tiniest sliver of routine.  And the fact that there will be tomorrows full of routine and normal and pleasant surprises which will far outweigh the difficult days.  

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