Making Decisions: A Lesson From Dad

The topic of "decisions" has been on my mind lately and I now realize why. 

Dad died ten years ago today and he made his own decisions about treatment for his kidney failure (deciding against it). It was not the decision I would have made for him but, strangely enough, I have to make a similar decision about my puppy, Taz (he's 7 but always my puppy). Taz doesn't have cancer but he has a parathyroid tumor causing hypercalcemia, requiring surgery. Without it, Taz could eventually go in to kidney failure.

Taz is the most temperamental dog (or cat for that matter) that I've ever had. He's picky about his food, doesn't like to be disturbed when he's asleep (but loves to hog the bed), gets grumpy with other dogs when his tummy hurts and absolutely refuses to take medication. Both our vet and dog walker said he is the original social distancer but if you're in his tribe (or eventually lets you in to his tribe), he adores you, cuddles with you and makes you feel like you’re his favorite person in the whole world!

The surgery requires a several day stay in the doggie ICU after surgery and, quite possibly,

medication for life.

I honestly don't know that I want to put my little sensitive guy through all that.

For a long time, I was upset with Dad for choosing not to investigate the cause of his kidney failure (most likely, his cancer had returned) much less treat it. I have come to realize that was the best choice for him.

We all have to make our own decisions.

We haven't decided about Taz yet but I am enjoying each day with him while I mull over the options.

As for Dad, he was an avid individualist full of contradictions which was both maddening and fascinating. He would never listen to reason but he was one of those people who would light up a room with his presence. He adored his kids and grandkids but was married and divorced more than a couple of times. He made and lost a boatload of money and then made it again (and lost it). He didn’t have a lot of friends but people loved to be around him!

He had the bluest eyes I've ever seen and a mischievous grin that he flashed not only throughout his life but at his granddaughter, Rachel, as he was dying.

I used to get so mad at him for a million different things (all absolutely legit, believe me) but I also recognize that I have wonderful memories of him and wouldn’t be the person I am today without his influence (whether it was negative or positive).

Of one thing I am sure and Rachel reminded me of this today: I was his favorite daughter.

(As his only daughter, it was a fun little running joke we had my entire life.)

Make the decisions that are right for you. Enjoy every moment with the people (and animals) in your life and every now and then, flash a mischievous grin – just for the heck of it.

Miss you, Dad. Don't cause too much trouble up there. 

Epilepsy Awareness Month: Interview with Mike and Lorraine Kimble

This is not so much an interview as it is sharing conversations I have had with a couple who cared for their profoundly disabled son, Mikie, for 43 years.

I asked Mike and Lorraine to participate in the Epilepsy Awareness Month interviews three years ago but life was as busy as you can imagine it might be caring for an adult who has been disabled since birth. Their son, Mikie, was not only born with epilepsy and was blind and unable to walk or talk but was mentally about six months old. 

Mikie and Socks

Mike, Lorraine and I have kept in touch and followed each other’s stories for years. When Robert had pulmonary problems, Lorraine reached out to give me advice on how to manage the congestion and mucus to keep pneumonia at bay. We’ve shared our love of animals, stories of rescuing them and nursing them back to health or through losing them.

Not too long ago, Mike and I had a respectful discussion about politics and didn’t even try to change each other’s minds and didn’t engage in any name-calling! (Yes, civilized disagreements can happen.)

There have been times Mike and Lorraine have asked for positive thoughts and prayers for their Mikie when he had fallen ill and their friends and family came through in droves. Mike and Lorraine are very spiritual people and the prayers from friends and family, far and wide, provided them with comfort during these difficult times.

They have given Robert their fair share of prayers and positive thoughts as well, when needed which have been most appreciated.

Sadly, Mikie died this past October 9 but the world has become a better place because Mike and Lorraine were generous enough to share him with us. My hope is by sharing him with you I can do Mikie justice and also provide Mike and Lorraine some sense of comfort.

While this epilepsy ending may not be what we wanted it is still another story of resilience, hope and strength.

Before he died, Lorraine shared with me a little bit about Mikie:

Mikie Kimble

“Mikie has more problems than most kids who suffer seizures, though a lot of kids like Mikie have seizures. Mentally he is about 6 months old, but he has been 6 months old for 43 years. He is blind and cannot walk or talk but makes vocal sounds that tell us when he is happy or when something isn't right. We have oxygen and his nebulizer on hand when we need it.

“As for seizures, the meds he is on now keep them at bay. Once in a while we see what we call a “fleeting” one. Sometimes we know and other times we don't. In times past, his seizures were very severe and difficult to control.

“As far as kids like him, he went to a special school for kids like him or even more severely disabled. When he was young we often went out as a family but as he aged it is more difficult because Hubby Mike has to lift him up and out of the wheelchair to the car and then tear down the wheelchair to fit in the car. Mikie is four and a half feet tall and weighs a little over a hundred pounds. We used to have a van but we used it so little because Mikie just doesn’t tolerate sitting up for more than a short time, even making it hard to go for doctor visits.

“The only problem we have when we go out is the stares and looks. We went to our zoo one beautiful day. Mikie loves noise and crowds but these kids followed us everywhere. We could hardly push Mikie in the wheelchair because they would stop walking by us and start walking backward right in front of us and no matter what we said they would not leave. My patience was gone by the time their mother finally caught up with them and told them they were ready to leave.

“I asked her if she had a good time and she replied that she did. I told her, “Well thank you for making sure we didn't. Your kids never saw a special needs child before?” Admittedly, I was nasty and hubby was a little mad at me but at that point I didn't care.

“This is one of the reasons why we don't go out as much. Plus, Mikie cannot sit up as long as he used too either.”

Mike shared some more positive experiences. 

“But there were other times when the stares turned out to not be gawking. Once when we took Mikie with us to the SC State Fair I noticed some teenagers staring at Mikie. They came over and one of them said, “Is he one of Connie’s kids?”  Connie was a mother of another child like Mikie that worked at the school with the kids and also watched many of them in her home after school, Mikie being one of them. While Robin was her special child, Robin had a very normal brother with regular friends and they came to love “Connie’s kids.” The kids at the fair were some of those friends and they recognized Mikie. They stopped just to show their love for special kids like Mikie! Later, while walking down the midway a young man came up and thrust a huge stuffed animal into Mikie’s lap!

“Another time we were on vacation in a far away state and while sitting at a restaurant we saw a women at another table staring in our direction. I was feeding Mikie, giving him a spoonful at a time while taking a few bites from my own plate. The lady came over and told me she also had a special child her child in her family and wanted to know if she could feed Mikie so I could finish my meal!

“And then while watching a Chinese Acrobatic show at “Splendid China” in Orlando, one of the acrobats noticed that Mikie was different and came up to him after the show and gave him a necklace with a beautiful heart dangling from it!”

Situations like these can be such a useful teaching opportunity for parents! I can only hope that Lorraine’s admonishment of the mom hit home and that she later talked to her kids about respecting all people, disabled or not.

Unfortunately, not all people are kind and Mike was very cognizant of this and was a fierce protector of Mikie. For many years, Mike did not share photos of Mikie for fear they would be used to create unkind memes. The photos used here have been shared publicly by Mike and I am happy to share them as well with the belief that people will be kind and not resort to the type of behavior Mike protected his son against for so many years.

Mikie’s dad shared this image and the description that follows.

“I know people wonder what Mikie’s diagnosis was, and they say a picture is worth a thousand words. This image of Mikie’s brain was taken fourteen years before his death.

“The little white dot and line in the middle of the image is his shunt, draining the excess fluid from his brain. The dark areas are basically fluid. The damaged brain that was there is gone.

“It certainly explains why Mikie was having seizures and why he was unable to learn. To look at this image it would be easy to assume that Mikie was a vegetable unable to do anything, but you would be so wrong to make that assumption! It was nothing short of miraculous that he could do the things that he did.”

Example after example showed me just how devoted Lorraine and Mike were as parents.

Lorraine told me that some of Mikie's classmates had only one parent and that the other parent wanted nothing to do with their special needs child. Lorraine said, “We have learned that it takes a team to care for a child. The love for mom and dad are felt through the child. God has blessed us with each other and a very special child.”

Mike shared a story of Mikie at the service for him which further shines a light on this extraordinary family.

“On occasion people would ask if Mikie enjoyed magic, since I enjoyed magic as a hobby and even as a part-time business for over 15 years. The answer was no, because Mikie could not see and he simply could not understand. But, it turned out that Mikie was a bit of an illusionist himself, even before I took a serious interest in the craft.

“After Mikie got out of school when he was 21, he had very extensive back surgery, a spinal fusion with two rods wired into his spine. It greatly improved his quality of life, allowing his organs a little more room and helping him to sit up. Our friends at Grace Covenant Church in Blythewood knew about this and also knew that he was blind. Members would take turns doing nursery duty, and on the day of this incident Ed Sweeten and several of his children were taking their turn, and Mikie was there with them in the nursery.

“At the conclusion of the worship service, several of the Sweeten children came to me exclaiming, “Tell dad that Mikie grinds his teeth!” Well, yes he does, and while that might bother some people, we were so used to it that it was music to our ears; either that or we tuned it out. “Dad says that the rods in Mikie’s back must be making the noise!”

“Mikie did a great Stevie Wonder impersonation, rolling his head side to side, and at the same time, he would grind his backmost molars in unison. Ed thought that it couldn’t be his teeth (as the children insisted) because his teeth were not clinched in the fashion that is usually associated with grinding one’s teeth. What he didn’t know was that it simply was not possible for Mikie to close his front teeth tightly together because of the many years of biting his arm. (That’s another story for another time.)

“So the illusion Mikie was able to pull off was that of creaking bones and metal as he moved his head side to side. And even though his mouth was open, you could not see him grinding those molars. The children were ecstatic that their dad could be so wrong! By the way, Mikie had those molars extracted and the surgeon said that should fix the grinding problem. Not so, he just moved up to grinding the next set!”

And, finally, I’d like to share a portion of Mikie’s obituary to honor this incredible family and the team of friends, family and caregivers who cared for Mikie throughout his life.

“Michael ‘Mikie’ Lee Kimble of Columbia, as he left his fragile body and entered into the presence of our Lord on Sunday morning, October 9, was able to do at least three things he never has done before. He walked, he talked, and he could see. Mikie was born on March 2nd, 1973 to his parents, Michael F. and Lorraine M. Kimble. Though blind and severely disabled and never able to speak, God used Mikie in great ways to call others to himself both in salvation and service. Though his body grew to barely over 100 pounds and he remained an infant for all of his life, as if he had been 6 months old for 43 years, never learning to walk or talk. But he knew how to laugh, and give great hugs and he stayed busy shaking and throwing his toys from his bed so others could serve him by returning them to him. And in doing so, friends and family were serving Jesus, because He said that “what you do for the least of these you do also for me”, and if any child was one of “the least of these” it was Mikie.

Mikie, Mike and Lorraine

Mikie is survived by his loving parents, Mike & Lorraine Kimble, Uncle Thomas (Mary) Kimble, cousins, Sharon Davis, Peggy Davis, Gerald Davis, Joel Kimble, Thomas Kimble Jr., Mary-Cathy Sewert, Tracy Kimble, and Laura Malcolm Bischer. Mikie was preceded in death by his grandparents, Margaret Caudill and Edna and Ivan Montague and his Aunts Barbara Davis and Lela McGuire, and Uncles David Davis and Steven Malcolm. The family expresses their gratitude to the health care workers at Palmetto Health Richland that have aided in Mikie’s care over the years, as well as the multitude of others that have assisted us, especially our friend and neighbor Cheryl Smith.”

The story does not end there.

After Mikie’s death, Mike and Lorraine contacted me as well as many others to see if any of the unused caregiving supplies would be of use to others. They were thinking of others within hours of losing their son.

This selfless couple will forever be in my heart and I hope their many memories of Mikie bring a smile to their heart.

Thank you to Mike and Lorraine for sharing Mikie with us.

Trish

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Death, Grief and Dreams

September 21 was World Alzheimer’s Day.  Alzheimer’s was not something that affected my parents or grandparents or other relatives but it has affected dear friends, their relatives and my dear, delightful, vivacious first Mother-in-Law. 

In honor of this beautiful woman, who was affectionately called “Bib” growing up (and for some reason, I always called her that as well), I posted a picture of her on Twitter with the hashtag #Take1Moment. This is a campaign that Caregiver Action Network created to “recognize caregivers who support their loved ones with Alzheimer’s disease.”

Bib (Betty) - Her birthday celebration in 2012

While I didn’t provide care for Bib, I saw how the disease affected her children and grandchildren and others who loved her and were her caregivers.  It was devastating to see this woman who was quite the fireball become lost in this awful disease. Bib ran a daycare most of her life and had such a wonderful connection with the children, they would come visit her years later.  She was a “glamorous grandma” and even took up modeling well into her sixties – fulfilling a lifelong dream of hers. She loved her friends, her family and even her beer and Seven & Seven.  She always had a twinkle in her eye and delighted in being mischievous. 

She once confided in me that the secret to her delicious green salads, aside from home-grown tomatoes and various other garden vegetables, was a sprinkle of sugar over the entire salad. 

Yep, that explains why her salads tasted like no other I had ever tasted. 

Bib was on my mind on September 21 but the entire day I had a nagging feeling there was something else I was supposed to remember about that day.  I felt like I missed someone’s birthday.  We have a lot of September birthdays in our family so I ticked them off in my head: Robert, Richard, Rich, Caty, Mark – nope.  None on September 21. 

Only in my dreams that night did I realize what my brain was trying to tell me. 

Rach, Trish, Mom, Grandma - August 1999

I woke up with a horrible feeling the next morning.  I had dreamt of my mom.  It had been a very long time since I dreamt of her (or, as I like to view it, since she visited me).  My dream was terrible, though.  I found out that mom, who died in 1999, had been alive this entire time and I didn’t know it.  I was horrified to find out she was living with Alzheimer’s in a care facility and that I had not visited her in 16 years. Oh, I was sick to my stomach! 

Bib’s daughter told me where my mom was and I finally found her.  I visited her and saw her living in a run-down facility but laughing with the other residents while keeping a beautiful, white puppy by her side.  She looked at me and didn’t seem to recognize me but then said to the other resident, “That’s my daughter. Just joking!”

She pulled a Robert.  Sometimes Robert will know something but say he doesn’t and then say it in a joking way. 

I knew Mom recognized me when she “joked” about it.

The guilt I felt was overwhelming.  (Seriously? I feel enough guilt during my waking hours and now I have to feel it in my dreams too!!?) 

The dream was vivid and real and Mom looked just as she did 16 years ago. It was no surprise she was with a puppy (I was surprised it wasn’t her beloved Sassy, though!). 

I woke up feeling exhausted and out of sorts.  Why did I have this dream about Mom?  Of course I still miss her after 16 years and as I approach my 55^th birthday, I am struck more than ever by just how young 56 years old was when she died.

Mom, Trish, Rachel - Monterey 1994

The guilt crept back that morning.  When did mom die, exactly?  How do I not remember the exact date?  It was in September.  It was after Caty’s birthday. 

Was it really September 21?  Is that why I had this dream?  Did I jumble the World Alzheimer’s Day and the day she died into a gigantic, confused ball of emotion? 

I frantically searched my files for the date she died.  My files are still not quite completely organized since we moved so I was becoming quite exasperated.  Even without confirmation, I knew September 21 was the day she died.  I finally did find my files and confirmed September 21 was indeed the day she died.  The entire period of her illness has not been forgotten but the exact date she died was tucked too far away for some reason.  Diagnosed in July 1999 and gone two months later.

Much too quickly.  Much too soon.

Grief is an unpredictable, wild ride.  Grief will rear up from the background completely unexpectedly but memories of Mom, Bib and others will always have a place safely kept in my heart and surrounded by love. 

Details may fade, guilt lessons, grief will soften but love will always remain strong.

Thank you for the visit, Mom.  

Tara, Rich, Trish, Robert, Mom - 1973(?)

Grief Wrapped in Five Pounds of Adorable Fluff

This was a rough week.

When we returned from vacation, Other Brother returned our Toy Pomeranian, Sassy, to our care.  For 13 years, we have shared custody of Sassy who had been our mom’s love of her life.  During their short time together, Sassy was a permanent fixture in the crook of Mom’s arm loving her and spoiling her unabashedly.


Miracle Dog (Photo Credit - Matt Stevens)

Mom died when Sassy was just three years old and the connection they had was felt the night Mom left us.  I even wrote about it in Forever a Caregiver:  

“I crawl back into bed, lie on my side and curl my knees up to my chin. I pull the blanket around me, closing my eyes to sleep again.

“In what seems like just a minute, I wake up to the neighbor’s dog barking and Sassy’s collar jiggling. I glance at the clock and it’s been an hour since I talked with Mom. I sit up to look at her and notice she is not breathing. I wait for a minute to be sure, listening in the quiet stillness of the house, not wanting this moment to be here yet. Hoping I am dreaming or not listening carefully enough. I wake up Rich so he can help me decide if Mom is breathing or not."

I believe Sassy knew when Mom was leaving us.

One of Mom’s final wishes was for Sassy to live with Other Brother.  Her thinking was that we had too many animals at our house already and her Sassy wouldn’t be given the level of attention to which she had become accustomed. 

That, and apparently, we didn’t pick up the other dog’s “business” in our backyard often enough.  Sassy needed full-time attention and a pristine backyard, according to Mom.

My Sister-in-Law was none too pleased about this deathbed wish.  She tells me if she had one or two more days with Mom, she would have been able to change her mind. 

It was not to be so Sassy lived for many years with Other Brother and his two kids while Sister-in-Law and the little “Princess” (as we eventually dubbed her) tolerated each other.  Our home became the Summer Home for Princess Sassy when Other Brother and Family vacationed. 

There was no shortage of love and attention given to this five pound of gorgeous fluff from either household.

Eventually, Sassy came to live with us full-time.  It happened gradually and Other Brother and I were convinced Mom would be fine with the arrangement (last wishes, notwithstanding).  Sassy was the boss of our house and let our Black Lab know that when he joined our household.  (Watching an 80 pound dog quiver and sit with his back turned to the little Pom he just met staring him down, was quite the site.)

Sassy turned sixteen this summer and was starting to show her age.  She had lost her hearing, had eye problems and, at the beginning of summer, was diagnosed with a collapsed trachea.

Sassy was no stranger to miracles, though, and we hoped we could keep her for a few more years.  Just four years earlier she had a terrible stroke and the vet was convinced she wouldn’t pull through.  In fact, we arrived at the clinic thinking we would have to put her down to keep her from suffering and she popped out of the oxygen cage as if nothing had happened. 

She was our miracle dog.

When we were on our recent vacation, Sassy stayed with Other Brother and his family.  They were happy to spend time with her again (yes, even SIL).  When we returned, Other Brother said Sassy had developed a cough with in the last few days.  We took her to the vet who gave her medication which seemed to help.  Within a week, however, she started to go downhill – fast.  She stopped eating and drinking and looked awful. 

We took her to our regular vet who diagnosed pneumonia and kidney failure.  If we were going to consider extreme measures, she would need a 24 hour ICU.  We whisked her to the clinic which gave her the miracle four years earlier and hoped for yet another miracle.  I didn’t want to be greedy and take too many miracles but this dog meant so much to all of us. 

Please, please, please give Sassy another miracle.

While we were pleading for a miracle, I know Mom was making a plea of her own:

“GIVE ME MY DAMN DOG ALREADY!”

Holding Sassy while she labored to breathe, even while on oxygen, was heartbreaking.  Instead of pleading for a miracle of more years, I wanted days.  My daughter, who was still on vacation and in the middle of the Atlantic, wouldn’t be home for four days.  My daughter, who I dubbed Dr. Doolittle when she was three years old because of her ability to connect with animals, loved Sassy so much and I knew how heartbroken she would be. 

Could Sassy hang on for a few more days?  Not without suffering which none of us wanted.  We made the gut-wrenching decision to let Sassy go and to end her suffering.  Other Brother assured me it was the right decision. 

My husband and I held Sassy in her final moments and, while we both were crying, I became wracked with sobs.  They surprised me with their intensity yet I had no intention of stopping them.

The sobs continued and I recognized them as the grief for losing a dog I loved with all my heart. 

I recognized the sobs as the grief for losing a connection to Mom which I had held on to for 13 years.

I recognized the sobs as the grief I felt for not being able to save my Dad from his own kidney failure. 

The sobs were heavy and loud and I made no attempt to quiet them.  This grief needed to be heard and I wasn’t standing in its way. 

I let the sobs come because they were doing me no good bottled up inside. 

The sobs rode their course yet my grief is still with me.

When my daughter arrived home, I dreaded telling her the news but I did get through it.  It was her turn to let grief envelop her. 

We’ve shared more tears and hugs and memories and will continue to do so as the days and months – even years – go by.   

For now, I’m comforted knowing Mom is happily reunited with her beautiful, spoiled princess. 

I also realized Sassy did have one more miracle in her and that was to allow me my grief.  For that, I will always be grateful to the adorable five pounds of fluff.