Wednesday, July 20, 2016

Family Traditions: Going to the State Fair!

One of our family traditions is to walk around the California State Fair in 100 degree heat, maneuver between the crowds, eat the latest, crazy concoction (deep-fried Twinkies are not nearly as good as you might imagine), see the animals and, if we’re lucky, see a cow giving birth!

It isn’t for everyone.

People I have convinced to go with me under the guise of “it’s the best thing ever!” have dropped out from going, well, twice.

Mom decided “never again” after trailing behind me and four-year-old Rachel in 110 degree heat and nearly fainting.

Come on people! Keep up! It’s a dry heat!

“You can come back to get me on this bench when you’re done” she quietly uttered as she patted at the sweat pouring down her face and neck. It actually was probably more like “There is no way IN HELL I am moving from this bench and DO NOT even THINK about inviting me next year!”

Soo, I suppose this means next weekend is out too?

Yes, I would take Rachel to the fair a few times each year. Yep, you heard me, we went more than once each year. Hey, there’s a lot to do! Face-painting, feeding the baby animals, watching the bungee jumpers plunge to their near death, eat, ride a few kiddie rides and win a goldfish or two (which, by the way, only live about three days. Now that was traumatic.).

Rach loved it! I mean, sure, she was little and was my captive but she really loved it. (Right, hon?)

Christopher and a friend tagged along one year when everyone else was “busy” and they were teens who I somehow managed to pull away from their video games (it must have been the promise of a lot of food.) We stumbled across the live-birthing area and, as they say, timing is everything! We witnessed a calf being born which both fascinated Christopher and his friend and traumatized them.

Soo, Chris (and his friend) are out as repeat visitors.

One year I even convinced my best friend to go with me and to bring her nephew. Two of us had a good time anyway. Did I mention BFF isn’t really a crowd-loving, junk-food eating, people-person?  Bonus: I think Nephew went home with a goldfish! Which lasted a few days . . .  

Sooo, BFF is out.

One year we had my cousins and aunts and uncles visiting from my home state of Nebraska (GO HUSKERS!) and they wanted to do something fun. I casually mentioned the State Fair was open and they actually wanted to go! Oh my gosh! This was the best thing ever! I didn’t have to bribe them or anything!

I haven’t seen them since but I think that has more to do with everyone being busy and several hundred miles away than the State Fair. I’m pretty sure.

Now that we care for Robert, I have another captive to take to the State Fair! No, no; he actually wants to go! Really!

Richard comes along but I think he considers it more of a duty to his crazy wife than something to look forward to every year. Although I have seen him smile plenty and he always readily says yes to my suggestions of going. He even has his favorite places to visit!

I think it might be growing on him!  

Much to my delight, my original little captive even comes with us! We don’t do face-painting like we did when she was four but we do spend some time with the goats (one of her favorite animals) and visit the birthing center (darn! No births this year!). We visit the exhibit halls now and not just for the refreshing AC.

We always end with some State Fair ice cream that only tastes delicious if it is running down the cone making our hands a sticky mess. (Robert has to eat his in a cup because he himself might melt if his hands got sticky.)

I absolutely love family traditions. They might be messy and they may slightly change from year to year and sometimes they might even be skipped for a year or two but they still leave a warm spot in my heart with memories to cherish forever. 

Although that warm spot might be heatstroke from the 100 degree weather.

Either way, it is one of my favorite family traditions.





Sunday, July 3, 2016

Steady as She (He) Goes

Shh! Let’s keep these thoughts between us. I don’t want to jinx myself!

Robert - Ready for the 4th of July
party at Day Program
Winter is a rough time for Robert. There are numerous seizure clusters, he is constantly on the brink of pneumonia and, most days, can barely stay awake.

Summer is a whole different story!

Robert’s seizures decrease, his congestion is steady yet manageable and he is awake and a delight.

I suppose the key to keeping him healthy year-round would be to move to a climate that is warm and sunny all year.  Since that is not possible (unless I can magically transplant my entire family, my job, Richard’s doctors, Robert’s doctors and day program to a year-round, sunny climate), we have to just get through winter and enjoy the break that summer brings us.

And we are!

We have been in our new house for a year and have happily settled into a routine. Robert loves having his own bedroom and I love the bigger bathroom in which to bathe him (heck, we even have a tub/shower for him! No more baths sitting on a chair and using the sink and a thousand towels to keep the floor dry!).

Richard loves having a one story house which means less pain for him on a daily basis. He has created a beautiful garden in our lovely backyard and we have been enjoying the fruits of his labors (tomatoes, blueberries, zucchini – I can’t even name everything he is growing!).

My work commute is cut in half (if not more) and even things at work have settled down after our big move last year. (I am so grateful last summer is a distant memory!)

We are organizing and decorating and settling in and doing home improvements instead of packing, unpacking, showing our house and trying to find a new place to live.

Life is good!  No – to borrow from Robert: excellent!

Of course, there are hiccups. We have made acquaintance with the local paramedics and they are familiar with us and our new address. No major emergencies but enough that they’ve had to come out a few times.  For us as caregivers, used to living on the edge and always on high alert for the next hospital stay or medical emergency, this is minor.

Comparatively speaking, things are really good.

Robert jokes and laughs and hasn’t had a blow up in quite some time. This means he is not stressed out!

Robert continues to love his Day Program and from what I can tell has many friends.  (I asked him once who is best friend was at Day Program and he told me, “They are all my best friends.”) Such a diplomat!

Robert’s drivers adore him and he comes home from program happy, albeit usually ready for a little nap and a little Family Feud time.

He is still slow and sometimes sleepy and we have had to stop a few seizure clusters with Ativan before they got out of control (even the Ativan has worked lately to stop the clusters!). We have to coach him to eat so meals take 90 minutes instead of two hours. I have my moments of frustration with the slowness but that just tells me I need to take a break.

That is okay too.  

We are within walking distance of one daughter and her fiancĂ© which makes me one happy mama. I have always dreamed of a family compound (you know, not living on top of each other but close enough to spend time together and help each other out). Now we need to convince everyone else that my idea is not at all crazy. Close but not crazy close. Who’s with me?!

The dogs are even well-adjusted and happy. Sure, Puppy needs more training but now we have time to devote to that and he is responding well. We will get there!

Healthy, happy, settled and enjoying life. What more can we ask for?

Of course, “winter is coming” is always in the back of my mind (and not just because I am a Game of Thrones fan) but that is not for a while.  For now, we are enjoying summer. We are enjoying the smooth sailing.

Summer is here.

Life is good.

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