Options = Quality of Life

We purchased a new "assistive device" today.  Every time I write the word "assistive," spell check would like me to reconsider.  For the record, I'm right, it's wrong. 

His snazzy new ride is pictured to the right. If you would indulge me in some of its features...

In its current configuration, it serves as a transport wheelchair.  Pete doesn't really need a wheelchair most of the time.  He's a walking person.  But he takes regular rests when walking.  If we are traveling (which we have plans to vacation in Colorado in a couple weeks), sometimes we need to walk longer distances and in those cases, a wheelchair is helpful. 

But notice the "cuff" that serves as the back of the chair.  The cuff flips over to the front of the seat.  The leg rests fold out and snap onto that tiny black thing on the bottom rod.  And drumroll... it turns into a walker with a seat.  

We had purchased a similar assistive device (stop correcting my spelling!!!) but it was harder to steer... let me draw your attention to the picture again.  Notice that the back wheels are the ones with the brakes.  A walker typically has front brakes and so that means if you were to turn it around and try to push someone in a walker (with a chair obviously), the front wheels don't swivel.  In his new ride, the front wheels swivel and the back wheels are reserved for the brake feature. 

I was laying in bed thinking about why I'm so thrilled about our new purchase and I realized that I'm working out some demons from last year's Colorado trip. 

The thing I remember the most was how tired we were.  Pete had been waking up 3-4 times/night.  His team of doctors had just introduced a sleep apnea machine that we didn't believe worked.  Pete was working full time and had decided on his own to stop driving.  Dan, Faith or I would drive him to and from work each day.  He was getting used to walking with a walker vs his beloved walking stick (which he had perceived to be a funkier version of himself.)  He was doing physical therapy at least once/week and all it did was remind us that he was having a harder and harder time walking.  We were tired... and weary. 

And so we went on vacation.  My dad and stepmother rented a condo in Colorado, and sensing our exhaustion and need for backup, had gracious invited us to share their vacation with them.  For me, vacationing with family and/or patient, loving, committed friends is a need of mine.  If something were to happen, someone has my back.  I need that option. 

The air was thinner in Colorado and made it difficult for Pete to breath. The door to our bedroom was on what is traditionally my side of the bed.  But since Pete was having such a difficult time walking, we were sleeping on the wrong side of the bed.  We decided to bring his walking stick on the plane and my dad had borrowed a wheelchair from a local church. So, Pete spent most of the time in the wheelchair.  But he was a walking person... maybe he walked slowly, maybe with a bit of difficulty but he was - and still is - a walking person.  

His new wheels offers the option to be a walking person whenever he chooses.  Options are great for quality of life.  And assistive devices offer quality of life.  At first they don't seem that way.  A Wheelchair (for someone who needs one) always seems to be a confining.  But in reality, it offers the option of mobility.  Assistive devices are conspicuous.  People sometimes stare (or worse, they evade).  Curiosity is normal.  Evasion is probably normal too... although disturbing to the one being evaded.  The introduction of an assistive device feels confining and are conspicuous.  Nevertheless, they offer options and options offer quality of life. 

And today I have the option to not order wheelchair service.  We have the option to take as long as we want to get to the gate.  Pete has the option to go to the rest room alone.  My family is going to learn patience perhaps on this trip - but for the love of God, we're on vacation... who's in a rush?  Pete can choose how he wants to get from place to place and that gives me the option to be his companion and not just his caregiver.  Pete can take control of his mobility and therefore, I hereby relinquish control of his mobility.

We're in a very different place one year later.  Pete's not working anymore, still not driving.  His fatigue is managed better.  My fatigue is managed better.  We're accustomed to a slower pace.  We have better expectations of ourselves and we are getting better at accepting our limitations.  Thanks to two new drugs this past year, Pete is walking faster and is much more alert.  Without sounding weird, his personality is back.  We had kind of lost Pete a year ago.  Even his jokes weren't the same. 

So I understand why I was laying in bed thrilled at our newly purchased wheels.  Today we were given options and options = quality of life.