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 fiancé/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!

ENOUGH.

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.

Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF

For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 

Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream

Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.

Finding the Sweet Spot

I’m not much of a baseball person. 

Okay, okay, I will wait while the gasps die down out here in SF Giants territory. 

Oh sure, when Giants fever was consuming my office I was a fan. I mean who couldn’t fall in love with Timmy Lincecum, Pablo Sandoval, Brian “The Beard” Wilson or Buster Posey (my personal favorite)?

Of course I loved going to the softball games of my niece (who is a die-hard Yankees fan, despite living in the Bay Area).  Attending my step-son’s baseball games while Richard coached was great fun for me and the girls because we would pull up a few chairs, grab some giant salted pretzels (or a hot dog for one daughter) from the snack shack and then somehow maneuver mustard onto the pretzel and relish onto the dog while sitting in the blazing sun.

Just getting situated with the food was enough to eat up a few innings.

Growing up, Mom and I would take Robert (he was called “Robbie” then) to Other Brother’s baseball games.  Mom and I would sit in the car while we let Robbie run wild. Oh, and he did. During one game, he got stuck in a mud puddle.  Yep – he even lost his shoes because he couldn’t get out.  The thought crossed my mind that he might not make it out. 

I’m pretty sure the game continued while the mud drama unfolded.

Mom and I would joke about Other Brother standing in the outfield with his gloved hand on his hip, elbow sticking out and knees bent with a hat tipped down to block the sun and a serious look crossing his face.  He looks like a teapot, Mom would say.

Mom and I loved watching "our teapot" and I have loved watching my niece and step-son play the sport. So while I am not much of a baseball person I certainly love and support those who do.

I asked Other Brother once we were grown and entrenched in our careers and families what his dream job would have been.

“Professional baseball player,” was his quick reply.

The image of his teapot stance in the outfield of Candlestick Park delighted me.

Years later I find myself using a baseball term: finding the sweet spot.  That’s where I am right now – trying to find the sweet spot with Robert’s new medication and keeping his congestion under control.

(Full disclosure: I’ve been thinking about this term and how elusive it seems to be but had to look it up to figure out exactly what it meant. I thought it was the strike zone but, apparently, it’s the part of the bat that helps the ball go the furthest. I’m sure my baseball-loving readers will correct me if that’s not correct).

It felt like Sunday we had hit the sweet spot.

Robert had been on a very, very low dose of his new medication (Trileptal) for a few weeks and the moodiness, balance issues and drowsiness had worn off.  The effectiveness of the medication had started to wear off, too, so the seizures were returning. We slightly increased his Trileptal which stopped the seizures cold but hadn’t yet affected his mood or balance. By Sunday night it dawned on me that he had gone all weekend without a seizure.

All weekend!!

I couldn’t believe it so checked the log and there weren’t any entries since Friday morning.  Could this medication really be the answer?  If we could just keep the side-effects at bay. . .

Robert slept in very late on Sunday, woke up in a great mood, was joking around and declaring every meal “delicious.” His congestion was still pretty bad but he hadn’t had a seizure in two days and he seemed really happy!  Robert even proudly declared that he hadn’t had a seizure in a long time.  

We hit the sweet spot! (Or as close to it as we can get.)

It didn’t actually last very long – Robert’s seizures returned (although not with the vengeance he’s had the past few months).  With the increase in medication, it took just a few days for there to be an increase in his irritability, unsteadiness and drowsiness.  The congestion has been keeping him up with coughing and throwing up (which doesn’t help his sleepiness and grouchy mood).

I suppose that’s what happens in baseball too. Home runs don’t happen with every “at bat” but remembering the time you hit the ball just right on that sweet spot is enough to keep you coming back to the plate, hitting and trying and practicing time and time again.

That’s what we’re doing: we keep trying.  We keep working; we keep practicing.

We keep trying to find that sweet spot again.