Tuesday, April 5, 2016

The Waiting

Lily was last seen in Grass Valley, CA
The waiting is the worst.

Waiting for test results.
Waiting to see if a new medication works.
Waiting to feel better.
Waiting to find a lost dog (Lily).

The waiting is the worst.

Waiting to see if Richard's extra pain is something new.
Waiting for Robert to finish eating.
Waiting for a test to even be scheduled.
Waiting to see if the sniffles develops into pneumonia.
Waiting to see if the pneumonia develops into sepsis.

Waiting feels like it sits in the half empty part of the glass.

Waiting is the worst for a glass half full girl like me.

I'm a doer. The waiting makes me "do."

I research tests and symptoms and disorders and diseases.

I print and distribute flyers and reach out on social media.

I create lists of questions.

I take vitals and keep logs and pour over them as if I were some grad student writing a dissertation.

The doing keeps me swimming in the glass half full.

When I am not doing - rather, when there is not anything to be done - the stillness of the waiting overwhelms me.

The waiting is the worst.

Sunday, April 3, 2016

Three Years

Three years ago Robert moved in with me and Richard.  Three years!! It really doesn’t seem possible it has been that long.

I took over Robert’s care at the end of 2008. Since that time he has lived in a Skilled Nursing Facility, an Assisted Living Residential Facility and a Board and Care Home.  Before that, he lived with his companion in their own home.

There were issues and stress with each arrangement. Robert was ill during the SNF stay and we were just coming to terms with the fact he could not safely live on his own. Almost simultaneously, I found out his living at home situation was worse than I had imagined (letting a homeless woman live with them who then gave Robert a black eye, living amongst piles of clutter and being taken advantage of by unscrupulous charlatans to name a few). 

The Assisted Living Facility was fine for a while (remember all those bingo wins and the piles of Milky Way candy bars he would win?) but his mobility declined and he needed much more assistance than they were able to provide.

Then came the Board and Care home.  Hmm.  Don’t even get me started.  I wrote extensively about the issues experienced there but can sum it up like this: they were not used to family involvement and did not take it well when I would not back off.  This was a very stressful situation and time.

Bringing Robert to live with us was not an easy decision, however. With Richard’s own health issues and chronic pain we wondered if we could keep up with Robert’s needs and slow but steady decline. Would it be too much for Richard? Too much for me? How could I juggle Robert, work and helping Richard when he was in need?

To the surprise of absolutely no one, I created my “pros and cons” list. I debated the list in my head, Richard and I discussed the current situation, the options and The List and we made the decision to have Robert live with us.

Over the years, Robert‘s mobility declined, his seizures increased and his bouts with pneumonia and sepsis were a regular occurrence.  Urinary (and sometimes bowel) incontinence were a fact of life.  I knew Robert needed a lot of assistance when we moved Robert in with us.

The bottom line was that there is nothing quite like home. That and I am such a control freak I realized I would be the least stressed if Robert lived with us and I could make the decisions regarding his care without a bunch of meddling from other people.

I figured Robert would live with us for a couple of years before it got to be too much.

Two years passed and we were still caring for Robert. 

We passed the three year mark last week.

During these three years, there have been plenty of times (sometimes several times a day) where I do think it is too much. 

Most of the time, though, what I have found myself realizing is that Richard and I work well as a team and we keep coming up with better, more efficient ways to care for Robert (we have enough durable medical equipment in the house to start our own medical supply store).  We split the tasks and even moved into a one story house (which couldn’t have happened without the help of Other Brother and our daughter, Rachel, and her fiancĂ©/aka Real Estate Broker extraordinaire).

Not to mention, Puppy grew up and (kind of) learned the concept of personal space.

Pneumonia hasn’t been a two or three time per year occurrence for a couple of years (yay!). It has been almost two years since he was hospitalized (not counting those pesky ER visits for some of the worst of his worrisome seizure clusters).

Don’t get me wrong, it is certainly not all puppy dogs and unicorns and sunshine.

Robert needs a lot of help with his daily tasks: dressing, cleaning up in the restroom, bathing and brushing his teeth.  He has numerous appointments with his neurologists; swallow disorder doctors, pulmonary docs, the dentist and weekly physical therapy. There is always some paperwork to be completed or medications to be reordered or picked up. It is a family joke that CVS is my second home.

It gets to be too much sometimes and I throw myself a little pity party when I pass a camper/trailer on the road that says “fun finder” or realize there are people that can actually go to dinner with their spouse or on a weekend getaway on a whim.  

Sometimes I want a pass on the other crappy things life throws at me or my loved ones.  See this plate, right here?  Just a little full.  See those good people in my life? Universe, leave them alone!


But I can’t let my pity parties last long - no one likes a pity party.

Especially kindness.

I am reminded of and overwhelmed with the kindness of others. Rachel and Matt stayed with Robert one evening so Richard and I could go to a dinner out. A dinner with my husband! Woohoo!

Strangers have gone above and beyond helping to find Rachel’s foster dog, Lily, who was lost at her newly adopted home. They have no idea what else we are dealing with (nor do I know what is going on in their lives either) but their kindness and effort has melted my heart.

Watching Robert share a deep, spiritual connection with Richard’s mom and seeing him ease her out of her depression is inspirational to me. He doesn’t even realize he is doing it.

Three years.  Three years of care, laughter, frustration, family, joy and, yes, the unexpected crap that inevitably comes along in life.

It hasn’t been easy but I am not ready to quit. I will take care of Robert for as long as I can and then I will figure out what the next best step is for him. 

In the meantime, we are going to continue to live life, do the best we can, laugh, be kind to others and keep the pity parties as short lived as possible.