Monday, July 31, 2017


It has been a tremendous honor to continue the blog series for Jason's Connection.  There is such wonderful power which comes from caregivers banding together and sharing pieces of themselves.  The website includes content in current events, inspirational stories, resources, art, and blogs.  Most importantly, it provides us all with a feeling of belonging.

When Tyler was a baby, I remember how people would love to talk to him, and have him around.  We went to gatherings, relatives, and out to eat.  We continued with hobbies as usual, and did our best to maintain a "normal" life.  Tyler would gladly tag along for whatever trips and activities we planned.  I have fond memories of walking on the boardwalk at Ocean City, Tyler up on my shoulders.  He loved to watch people and wave at them as they passed.

Soon Tyler grew older and the behaviors began.  He was bigger and much less comfortable with his surroundings.  Getting into enclosed places or into crowded places made him edgy and aggravated.  This is where the isolation began.  I didn't recognize it at first, but it was starting.  

As Tyler grew older still, the behaviors became even more intense.  He was especially difficult to handle when I would be away for the evening.  We created more and more strategies to make sure I wasn't separated from him for long periods.  Eating in restaurants became more difficult, so we started to rely on more take-out.  We carefully selected our vacation destinations to match his needs.  

During one of the more difficult behavior periods, I was scheduled for a weekend bowling tournament a few hours away.  It was rare at this point that I would even consider this, but I felt compelled to have a weekend with friends to have a good time.  It wound up being a disaster.  Tyler was anxious that I wasn't around, and his behavior escalated all weekend. Each time I called home my wife was crying and frustrated as to what to do with him.  I counted down the hours until I got home again.

And so it would be as the years went on.  We withdrew from activities more and more.  We had some wonderful friends that would come spend time with us at our house, but we no longer visited at anyone's home.  Even our family saw us less because it became harder to visit them.  Before we knew it, we were spending every day just trying to survive without major incidents.  It was like we circled the wagons to keep ourselves, Tyler, and everyone else comfortable and safe.

In the last few years of Tyler living with us, we had become extremely isolated.  Tyler and I would spend our evenings downstairs in the man cave.  He was fairly happy playing his wii bowling, and doing other activities, and I would watch TV or work from my laptop.  My wife and daughter would be upstairs in the living room.  We were actually to the point of isolating ourselves from EACH OTHER.  

Isolation usually does not happen overnight.  Rather, it is a slow progression that one day I looked back on and realized just how far it had gone.  That isolation contributed to my anxiety and depression.  Worse yet, the isolation can feel like the best option, or the only option, so we did it more and more.  Its like a cancer that slowly spreads.

It's easy to say...don't isolate yourself!  But reality is what it is.  The important thing is to step back and take inventory of the ways you are isolating yourself.  Once you do that, find ways to minimize the isolation.  Find some alternatives to what you feel you cannot do.  Try to take full advantage of opportunities that you do have.  Simply recognize that it is a dangerous and debilitating element of what we do as caregivers and that we must fight it at all costs.  We must preserve our sense of self, even in small doses.

My prayer for all caregivers tonight is to get that breath of fresh air, even once in a while, that lets us know that we are still social individuals capable of happiness.

Be well and God bless.   Tom  

Wednesday, July 19, 2017

A Rough Subject

There is an issue out there that I have seen very little discussion on.  This issue is unthinkable.  It's an issue that gets the occasional story in the news, we know it exists, but we don't talk about.  But I will....

Caregiver murder-suicides are real.  And they happen much more than we ever hear about. One study showed that 20% of caregivers fear that they could become violent at some point with the person they care for.  The same article sighted that over 30% of caregivers admitted that they had verbally or physically abused that person they cared for.  Cases of elderly murder-suicides has risen significantly over the last decade.  This often happens when an elderly caregiver is stricken ill and realizes they cannot care for their loved one any longer.

What causes this to happen??  These are people that LOVE their child, or spouse, and would do anything for them!

  • They have not secured adequate services.  Often, caregivers do not know where to go or how to get the support that they need
  • They have not secured adequate services.  No...this is not a typo.  Unfortunately there are those times where adequate services do not exist.  Worst yet, some caregivers seek relief and are turned away
  • Untreated depression.  Many, many caregivers are at risk for anxiety and depression disorders but do not seek help
  • The "nobody else can care for them" syndrome.  Caregivers will believe that without them, the person they give care to will suffer terrible consequences.  I'd love to say that this is totally irrational, but with a lack of available services, it can be a scary reality
  • Negative stigmas.  Without doing research, caregivers can assume that all facilities are dirty, cruel, and unregulated.  While poor facilities do exist, there are many available facilities that provide tremendous support
  • Isolation.  Caregivers that have been pushed to such tragic levels may likely have a feeling of being alone.  They can feel that nobody else understands and that the responsibility has been placed fully on their shoulders
I would be willing to bet that every caregiver with a significantly disabled person has at least wondered if things would end in such a manner.  I know I did.  I was afraid that someday I would become ill and no longer be able to care for Tyler, and that I may be forced to make an unthinkable choice for both of us.  This, as I would come to find out, was an uneducated and hopeless train of thought, perpetuated by a lack of faith.  

HOPELESSNESS is the common thread with most of these incidents.  The caregiver becomes so deep in the woods of depression that they believe there is no answer, no way out.  They feel as though their own lives are gone, never to return.  

There is always hope.  Let me say that again...there is ALWAYS hope.  Even when you cannot see it, there is hope.  But to find that hope, it means reaching out to get help.  The help may come in the form of an agency that can provide services.  The help may come from family who had never been asked before.  The help may certainly come from a support group, or church family.  Afterall, the right church will help restore lost faith.

As hard as it is, we MUST recognize as caregivers that we are at risk.  When we feel that hope is slipping from our fingers, we must find means of support to restore us.  We must always take a proactive approach to ensure that we, and our special loved one, are set up to live comfortably regardless of the outside circumstances.  In other words, we must never allow our lives to become void of support and help.

Be well and God bless.    Tom

Tuesday, July 18, 2017


First of all, full disclosure.....I like spiders.  I think they are fascinating creatures that do great things and get an incredibly bad rap.  Perhaps it was all of the 70's movies where the spiders took over towns and sucked people's blood!

The truth is, spiders are beautiful and useful.  They make sure that our lives are not overrun with insects.  House spiders, if largely left alone, will eat all other insects in your home. Look at it this way...if you have a spider in the house, he is eating SOMETHING!

Spiders do invoke fear in many people.  The biggest reason for this is the fact that they are largely misunderstood.  People fear what they do not understand.  Seeing a spider for most people means they are going to attack you, want to hurt you, want to crawl in your ear while you sleep, or will go to the nearest toxic dump and try to grow 8 feet tall to take over the world.  These are the common misconceptions.  We fear what we don't understand!

Such is the world of those with mental, physical, and emotional disabilities.  So often there are people who are not properly educated, and think it's ok to shun people that they do not understand.  Maybe someone looks at Tyler and wonders if they can "catch something from him".  Or they are afraid of him because they can't handle that he is different.  They might feel better if he is placed somewhere out of sight from everyone else.  

Tyler is still beautiful and useful, just like that spider.  A person with cerebral palsy and confined to a wheelchair is still wonderful, smart, and charming.  A person with Alzheimer is still fascinating to listen to and share time with.  People that are considered "different" have amazing stories to share because they see life and live life much differently than we do. They are not to be shunned or feared just because they look different or behave differently!

The most rewarding thing that a "typical" person can do is to educate themselves about the wonderful creatures around them.  Just like the spider, Tyler was created by God to serve a very specific and wonderful purpose.  Take the time to understand and feel the beauty in all things...ESPECIALLY those you don't fully understand.

Be well and God bless.   Tom

Sunday, July 16, 2017

Favorite Memory

I often receive questions that I try to answer here.  I recently got one that I wanted to address:

"What is your most memorable Tyler memory?"

I have a handful that would qualify.  I've written about a few of those in the past.  One that I would rank right up there happened just 2 years ago.

My wife and I visited Disney World in 2015 to celebrate our 25th wedding anniversary.  We took our children along, as well as my in-laws.  At this time we also knew that we were working on placing Tyler into a residential home.  Something inside of me knew that things were about to change soon.  

We wound down our vacation with one last day at Epcot.  Over the years we had spent many days there.  We took many pictures in front of the "ball" each visit.  I can remember how much Tyler loved riding Test Track, and all of the walks around the nations.  Tyler loved watching the fireworks show at the end of the day.  I can still picture him laughing at the noises and lights until I thought his belly would bust.

On this particular day I could feel that we were at an ending point of something.  It was as though I knew we would never pass that way again.  Tyler did not have a need to be back there anymore, and I would never have the opportunity to take him again.

As we left the park for what I knew to be the last time, I knelt down beside him.  We smiled at each other, and I told him that I was so grateful that he was with me so many times to enjoy such a great place together.  I told him that no matter how many times I came back, it would never quite be the same without him.  And I told him that it was an honor and a privilege to have given him that experience.  I told him that I loved him as much as any Dad could love his son.

While perhaps not the most joyous occasion, it was very memorable to me.  It was a moment of mutual respect and appreciation for each other.  It was a quiet and private memory that means a lot to me.  In that moment I felt like we were beginning our process of letting go of the relationship we had had for so many years, and preparing to move into a new one.  It was also a moment to appreciate where we had been and what we meant to each other.

Tyler may not have a deep understanding of the world, or how people function within it, but he seemed to have a feel for what was happening in our relationship.  On that day, he let me know in his own way that he was ok with us, and he was ready to turn a new page in our lives.  

That moment....that small snapshot in front of our favorite attraction may have seemed insignificant to someone passing by, but it is a moment that I will always remember.

Be well and God bless.    Tom

Saturday, July 15, 2017

Double Edged Sword

Good Evening,

We got to visit with Tyler a few times over the last 2 weeks.  He is continuing to do an amazing job in his residential home.  I'm so happy that HE is happy.  

Just this week I picked him up to meet us for some pizza.  As soon as he got in the car with me, he began to do the familiar habits we always had together.  He started to imitate my little physical driving habits the way he has always done. He pretended to hold the gear shift the way I do.  He wanted me to say and do all of the little things that he was always used to. Its almost like he never missed a beat.  We went and had a nice dinner.  Afterward, he was completely at ease heading back to his house and settling in.  In fact, once he did settle in, he was eager for me to leave him to get back to his "normal".

As his Dad, who loves him so much, it's a hard thing to reflect upon.  After so many years of caring for him, I waited for the day where I wouldn't be so needed by him.  It isn't easy to be someone's primary caregiver.  Every thought, or idea, had to start and end with how it would effect him.  There is no question that having someone depend on you heavily every day is a draining experience.  This holds true whether you have a child with special needs, or a parent with cognitive difficulties.  At times, it made me feel like I couldn't think for myself, or care for myself.

On the flip side, there is the new feeling of Tyler not needing me the way he did before. Watching him ask me to leave his space so he can get back to his routine leaves me with a very bittersweet feeling.  What the heck is wrong with me??

The truth is, I was his caregiver for 25 years.  In 25 years I became extremely conditioned in our environment.  In that time there became a stark difference between what I knew to be true, and what my emotions were telling me.  My head operated on one level, but my heart was always on a slightly different level.  

So when Tyler smiles and waves goodbye so eagerly, my brain is very happy that he feels so comfortable in his home, but my heart hurts because he doesn't need me the way he used to.  I don't want to be his "everything" anymore, but I hate the feeling that comes along with it.

My takeaway is that I have to follow my brain on this one, and try to soothe my broken heart. His emotional well-being is what is important, not my own.  And just as he has had to figure out how to fill his life in a different way, I must do the same.  

Be well and God bless.     Tom

Saturday, July 8, 2017


Alice Walker wrote:  "This is a wonderful planet, and it is being completely destroyed by people who have too much money and power, and no empathy".

Empathy is a very difficult thing.  It is the ability to reach into someone else's heart and feel what they are feeling.  It is the rare ability to not just understand what someone else is feeling, but to actually feel what they must be feeling.  It is a wonderful gift, but in today's world it can become a very heavy thing to carry around.  

I ask myself, all the time, WHY do children get cancer?  WHY do children go missing?  WHY are so many people becoming addicted to drugs?  WHY are so many children born on the autism spectrum?  The truth is....I don't have any answers, and I weep for every person that struggles.

Personally, I think we worry about the wrong things.  We are consumed with right versus left, who the celebrities are dating, and how much the Yankee outfielder is being paid. Meanwhile, we have 2 million children every year who are trafficked into the commercial sex trade.  We have over 7 million people die every year from cancer.  Approximately 1 in 60 children are diagnosed with autism.  1 in 6 people in the US do not have enough food on a daily basis.  Approximately 11% of adult homeless individuals are veterans.  

Somehow, some way, we have to become a society that rejects the frivolous nonsense, and begins to open it's eyes to the suffering of our brothers and sisters.  We must all feel the empathy that is required to reach out to those less fortunate than us.  We must reject the "politics" and embrace the humanity that is neighbor helping neighbor.  Having a single child sold into slavery is an abomination, having a single veteran sleeping in a subway is a tragedy.  Needing to beg for resources to cure cancer, while designer drugs have their own commercial time is horrible.  Having any child or adult with mental health issues go untreated is something that we will all have to answer for someday.

I ask everyone today to please set aside their political feelings, agendas, and animosity, and pledge to stand up for all human.  To not judge by someone's color, religion, orientation, or beliefs, and to start treating them with the compassion that all humans deserve.  To place our priorities with those less fortunate than us, hurting, disabled, sick, and lost.  

Matthew 10:8 says "Heal the sick, raise the dead, cleanse those that have leprosy, drive out demons.  Freely you have received; freely give".  

In other words....if you have been blessed with food on your table and good health, you should ensure the same for others.

Lets become a people who care for one another.

Be well and God bless.    Tom