Sunday, June 19, 2016

Happy Father’s Day

Chances are your dad is not perfect. You may even be a dad and I am going to look into my crystal ball and see that you are probably not perfect either.

That is because you are human and we humans are not known for getting everything right. Sometimes, we’re not even close.

Growing up, Robert, Other Brother and I saw all kinds of sides of our dad. He was funny, energetic, ornery, absent, equal parts loving and rude with a dash of crazy (and I mean that as an actual diagnosis).

Dad was diagnosed with everything from Paranoid Schizophrenia to Bipolar to some kind of Personality Disorder. Who knows what the “correct” diagnosis was (or if there should be one at all).

All I know is he was full of life and drive and enthusiasm and was the best salesman around. He sold everything from china, smoke detectors (yes, these were sold door to door back in the day), insurance, real estate, pots and pans and, oddly enough for the most unhealthy man alive, vitamins.

When he was home he made some delicious fudge for our Friday night movie nights and when we visited our grandparent’s home, there was plenty of air guitar and singing to The Beatles. Dad gathered up any kids interested in being in a band and we sang our hearts out. (Off key, of course, as we cannot even sing Happy Birthday without dogs barking along with us and neighbors closing their windows.)

Oh but he was so frustrating! He and mom loudly fought about anything (especially when they drank too much which was pretty often) and they eventually divorced. Dad remarried a few more times (mom only once more) yet Dad continued to declare his undying love for our mom for the rest of his life. Sure, she considered filing a restraining order but he was pretty harmless. Fortunately, mom’s second husband, George, took a liking to Dad and would play intermediary between the two.

George, who was quite the handyman, would also help Dad out with various household tasks that Dad was ill-equipped to do on his own (you know, like change a light bulb).

The three had an interesting relationship and it is only fitting they are all buried in the same cemetery within a hundred yards of each other. Dad wanted to be buried right next to Mom but we knew she would never forgive us and would haunt us forever if we did that to her. Instead, we buried Dad just out of rock-throwing distance in case Mom got too irritated with him.

They needed their space here and, to be on the safe side, we ensured they had some space in the after-life too.

Dad infuriated me no end when he was sick. He was the worst patient in the hospital and I would follow behind him apologizing to the nursing staff for his rude and demanding behavior. To appease him, I tried to make him as comfortable as possible, even going so far as fulfilling his wish for satin pajamas.

Yep, Dad fancied himself Hugh Hefner even in the hospital and battling bladder cancer.

Dad called me to celebrate surviving five years being cancer free and I sent him a plant to commemorate the occasion (which he promptly killed).  Eventually, he became ill again and was told he had kidney failure and needed tests to find out if cancer had returned and was also advised to go on dialysis.

He didn’t want either.

He continued to see the doctor only to get pain medications since whatever was making him sick was also causing him great discomfort. I insisted on going to the doctor with him only to be told that he absolutely did not want me to go. He was afraid I would make him get treatment after seeing the doctor with him and he didn’t want to be mad at me.

That was a week before he died.

Instead of us being in an argument, I visited him with Richard and Rachel. Other Brother visited with his daughter. Dad loved being with his granddaughters but was also in quite a bit of pain. He demanded more pain pills than what he should have and after a bit of discussion and wringing of hands, Other Brother and I let him take an extra pill or two.

Dad was in a lot of pain.

That night Dad wanted McDonalds for dinner. A double-cheeseburger, fries, shake and apple pie. Washed down with a can or two of Diet Pepsi and as many cigarettes as he could smoke.

Dad never was one to eat well or consider a healthy lifestyle. He sincerely believed that if he stopped smoking he would be so stressed out that he would die of a heart attack.

As smart as he was, logic was not his strong-suit.

Dad died the next day in the emergency room. I don’t think it was the McDonalds “last meal” that killed him although that probably didn’t help. That was one of the great things about Dad. He did things his own way, in his own time and did not care what anyone else thought.

He lived life on his own terms which was a double-edged sword. He was difficult and rude and downright mean sometimes but he also didn’t give a hoot what anyone thought about him.

He chose not to find out if cancer had returned and he definitely chose not to go on dialysis for his kidney failure. It has crossed my mind that if he really was mentally ill then maybe he should not have been able to make that decision for himself. Except he lived on his own, lived his life the way he wanted and was able to know that he did not want his only daughter mad at him at the end of his life.

Dad loved his family. Not just me, his only daughter, but his sons and brothers and sisters (one who had died in their youth) and nieces and nephews and his grandkids. Oh! He loved his grandkids!

Dad was complex and he was not perfect. He wasn’t even close.

As frustrated as he made me throughout my life I realized that I loved him anyway. Why?

Because he is my dad. Regardless of who he was and how he behaved, he was my dad.  I want to believe that he did the best he could with what he had to work with.

I believe that we all may not be perfect and may make some stupid mistakes or negligent decisions but we want to try our best.

It is not about forgiveness.  It is about acceptance.

Happy Father’s Day to both Dad and George. I know you are hanging out together, probably irritating the heck out of mom, but enjoying every second (and she is too but won’t admit it!).

Happy Father’s Day!

Wednesday, May 25, 2016

Atlas of Caregiving

Last fall, I wrote about Richard, Robert and I participating in a caregiving study about our caregiving day.

Robert's View: Part of his grooming routine
It was conducted by Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving and Dawn Nafus, his partner for the study.

Robert has volunteered for studies his entire life – for medication, the Vagus Nerve Stimulator, the Deep Brain Stimulator – anything that might help him and others with uncontrolled epilepsy.  Robert was more than willing to participate in this study about caregivers and we were excited as well.

Rajiv and Dawn made it very easy and even though it sounds like it would be intrusive (cameras, home monitoring devices, keeping a log of activities), it really wasn’t.  We quickly forgot about the cameras and went about our caregiving day. 

Robert's View: Watching Trish organize his weekly meds
As I wrote in September, the dozens of interruptions throughout our caregiving day is mind-boggling! Caregivers know this but until I saw it on paper I did not really realize the extent of how much we juggle between (and in spite of) the interruptions. 

Fourteen families participated in this study and each one is a fascinating and eye-opening read. The results of this pilot program are out and can be read here.  (Our story is here.) 

Robert's View: Richard waiting for Robert
If you are not a caregiver, I encourage you to read each and every one of these stories to get a sense of the vast amount of caregiving being done. If you are a caregiver, you will definitely relate to these stories!

On a personal note, I would like to thank Rajiv, Dawn and Celine Takatsuno (who we have worked with throughout the publishing process).  They are doing great things for caregivers and truly care about our day and what would help make our day a little easier.

We all need that extra help and support in our busy, crazy caregiving days.

Trish's View: Helping Robert

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.