Watching

Watching

I watch

your body slowly deteriorating

not daily, not weekly

but it is there.

I compare to a year past

and then I know

your body is betraying you.

Friends notice

family too,

our children don’t want to admit.

To them you are the superhero

one that can do anything

build anything

fix anything.

Maybe that is how it should be.

I watch you move and sway,

damn medications.

Damn disease.

I watch you struggle to button,

Damn disease.

I watch you walk with your bent back,

I watch you grimace in pain.

Damn disease.

I watch your hands tremor,

Damn disease.

I watch those many trips to the bathroom

Damn disease

I watch you take your medications

throughout the day

too many to count.

Damn disease

I watch you keep going

fighting back that pain and stiffness

I love your drive,

your determination.

I love that you never give up

I love that you refuse to slow down

I watch you with admiration and love.

I see the strength

Caregivers- 

the Well Spouse

I see the strength inside your words,

the strength you sometimes fail to see.

I see the love inside your heart, 

the love that helps you get through this.

I hear the pain in your words,

the fears, the screams, the doubts you feel.

I see yours smile and yours tears,

for moments bad, and moments good.

I see your journey through my eyes,

and understand your journey's hard.

J. Kendrick

2-28-15

2-28-15

If Wishes Could Come True

If Wishes Could Come True

by a Well Spouse 

If wishes could come true, my dear heart, these would be my wishes for you.

The pain in your body would go away

Good health would return to you this day

Out of bed you would get, with a bounce in your step

The light in your eyes would shine bright again

Thoughts of us would be first on your mind

We would once again walk hand in hand

To once again see the sun rise in the sky

To run and dance in the rain

To live, to laugh, to love again........

JMK

Caregiver Stories #3 - Determination by Tammy Kalp

Determination

Here we are two and a half years after Paul's life-threatening accident on September 15, 2012, an accident where Paul wasn't wearing his motorcycle helmet.

On the night of the accident, Paul was late getting to the club I was managing, but it didn't concern me too much since I knew he usually got caught up with renovations around the house. I sent him a text letting him know I was headed home early. When he didn't answer, I imagined his phone was tucked away in his motorcycle pouch, he would visit for a bit with the staff, and head on home having just missed me.

Instead, I received the phone call from the emergency room, the call no one wants to receive. The staff member informed me that Paul was in critical condition and being transported to another hospital. Frantic, I called his son, my mother, and my staff at the club. Just that moment, my best friend Valerie called me to pick her up so she could be with me.

We beat the helicopter to the hospital and waited for his arrival. Someone delivered Paul's wallet and ring to me. I remember having a disgusting feeling he had already left me. I was thinking to myself, "You better not die or I will raise you from the dead and kill you myself!"

Finally, we got to see him. Completely agitated, he was trying to find his way off the gurney. I told him I was there, informed him he was headed off to surgery, and let him know he could trust that I wasn't going anywhere. This seemed to calm him as he left for surgery to have part of his skull removed to allow for swelling.

The next four months were a nightmare that you would see in Lifetime movies of the week complete with recovery from infancy, family drama, and simple heartache from this whole ordeal. But he was finally home with me, ready to work towards our future.

Paul has been so amazing in his determination and drive to get back to his old self. Unfortunately, individuals that suffer from a Traumatic Brain Injury (TBI) cannot do it alone and that's where I really have to take control. Paul needs constant supervision and support- His logical thinking, impulse control, and anger management are real deficits. He also needs someone to manage his care to ensure he's getting every opportunity available to him. Additionally, as his now wife, someone needs to ensure we are taken care of on the homefront so that we do not become homeless. An individual with a TBI absolutely needs to live in a serene, safe, and happy environment- They cannot emotionally or mentally deal with stress or worry.

We are steadily moving towards our future. We have spent countless hours in doctor's offices, therapist's rooms, waiting rooms, and in vehicles driving to his appointments, with the focus on his recovery- We are always on the go. I participate in his therapy both in the office and at home working on his greatest weaknesses, speech and language. We work with iPad applications, flash cards, and general communication. He's considered 88% communicable and is now learning how to read again!!! I tell people this by far has been the toughest lifestyle adjustment I have ever had with the best rewards.

YouTube video of Paul's progress

As we round the corner towards the third year anniversary of this ordeal, I am sometimes saddened by old memories of what we were. I tell Paul that he took one for the team but he certainly didn't have to do it like this! But now that he is finally past the anger phase, he has gained more control of his behaviors and his endurance is stronger we can do more public things.

We are so fortunate that he's as well as he is, that he wants to work to get better, and that we have each other. We are grateful for the love and support of a very few family and friends and to have so many resources available to us. Because of this I am certain our future is so bright we gotta wear shades!!!!!

Caregiver Stories #2- The Military Family- Tammy Kalp

Paul's recovery after his motorcycle accident on September 15, 2012, has been one that Lifetime movies of the week are made of.

Paul's injuries included breaking everything on the left side of his body,losing the use of the right side of his body, puncturing his right lung, and most importantly suffering a Traumatic Brain Injury (TBI).

I specifically remember a phone conversation Dr. Geffe was having with Paul's family discussing the prognosis for Paul.  He stated that he felt Paul had some things on his side, he was "relatively young"strong and healthy.  But he predicted Paul would most likely land in a nursing home and "may" be able to feed himself.

It was time for the family to decide if Paul would want to live like this for the rest of his life or forge ahead with the rehabilitation for a hopeful better recovery
I posted on Facebook  that  those individuals who would like to pay their last respects to Paul should visit tomorrow. Thankfully I did!!!  The next morning 35 troops from the base showed up at  9:00 am to "pay their respects."  Instead, they inspired Paul to fight for his life.

Chris, one of the first troops to visit with Paul, later told me that he punched Paul in his broken leg and said, "You stubborn son of a bitch you'd better wake up!"  He felt Paul's glare on him, boogied on out of the room, and encouraged the rest of the troops to further inspire Paul.  For the rest of the morning pairs funneled in talking to their "brother", Paul, telling him it was time to show what he was made of, to fight to come back to us and prove the doctors wrong.

That day was such an amazing roller coaster ride.

I remember emotional moments of people crying uncontrollably, Becky rushing at me that Paul was asking for me, and the valiant voice of Paul's nurse to Dr. Geffe that Paul was indeed responsive. I remember the smile on the neurological doctor's face when he said, "You're going to get 85-95% of Paul back!" I remember his daughter Katie dancing around knowing she was right, her dad was going to make it.  I remember telling the troops we were getting him back but needed their help to do it.

Some did, I had the support of many in the journey.  When Paul began to become more cognitively aware, some would converse with him via Skype.  When he came home from the hospital, people could not wait to see him again.  He was isolated for so long from his everyday family that they needed to be reunited.  People would visit, invited us to functions, and we would visit them as well.  It was awesome to see the love and support his military family had for their"brother."

Then, everyday life took over.  Those "brothers" that promised to help me and would not let me do this alone slowly disappeared.  The "brothers" that promised to spend time with him never followed through.  Some simply moved away.  Some contacted me for an update and discovered our struggle only to promise to help yet turned the other cheek.  These "brothers" that you would think, after literally crying over him, would follow through on their word did not.

As his caregiver, I have lost contact with many of my friends, some supported us and were very willing to include us in their regular activities, yet most have faded away.

Eventually his "military family" faded away and we are in our own seclusion.  I say we have been "voted off the island";  We are our on our own little island working through this recovery process. People do not visit, call, text, or Skype this man they called their "brother."  Why? Not sure.  Our friend Brenda thinks they feel awkward around him.   In my opinion, these "brothers" inspired Paul to fight for his life-   He needed them that day and continues to need them..  The inspiration Paul gets when he sees someone from his "military family" is incredible;  He walks a bit taller, speaks a bit clearer, and shows signs of my old guy.

With Veterans Day just passed,  I cannot help but miss Paul's military family for him.  I believe that not only should we honor our vets, but the military family should take time to reflect and reach out to each other.  Reconnect with one another.  These are the brothers you trust with your life.  They all are important to you one way or another.  They still need your love and support.

Caregiver Stories- #1 Rider's Choice by Tammy Kalp

I am starting a new blog series for caregiver guest blogs. 

Why? I am involved in online support groups for caregivers and have met many amazing individuals that have so much to offer and share with the world. What a better way to get it out there is for those going through their caregiver journey to have a place to share their experiences.
--------------Jane

A few weeks ago, I received this post on Facebook from one of my caregiver friends,Tammy Kalp, titled Rider's Choice. When you read her story, you will understand why I needed to share this story with you. 

I was asked to write a piece that landed in our local paper. I hope it speaks to you all as well: Rider's Choice Rider's Choice they say self-righteously. Riders Choice that the individual motorcyclist has the right to choose whether or not to ride with a helmet on their head; This helmet either protecting one of the most important organs of their body or attached to the motorcycle protecting nothing. Let me share with you the choice my husband made on September 15, 2012 at about 8:50pm. He made the choice to jump on his motorcycle to visit me at the nightclub I managed and within ten minutes our lives changed and his almost ended. This Rider's Choice came with some serious consequences. These consequences resulted from a split second decision on his part not to wear his helmet, a novice driver's decision to pull out in front of him, and the subsequent collision Paul's injuries were extensive- He broke everything on the left side of his body, punctured his right lung, suffered a Traumatic Brain Injury and lost the use of the right side of his body. Paul did nothing to cause this accident- He was maintaining proper speed and being a responsible rider except he exercised his Rider's Choice not to wear his helmet. Had Paul worn his helmet, he would have been released to go home from the hospital on September 26th. Instead, he was sent to a rehab facility until January 11, 2013. What Paul had to go through was horrific- He had to start from the very beginning including dressing, shaving, tying his shoes, opening bottles, reading, writing, speaking, and toilet training. EVERYTHING! It was difficult to watch, but, over time he has become my walking, driving jabbering fool! I love this man and am amazed at what he's been able to accomplish through this ordeal. Unfortunately, this is a typical story many motorcyclists make- the choice not to wear a helmet. Now let me share with you what his choice cost me. At the time of his accident we were not married. While he did have a Will and Power of Attorney drawn up for me, he hadn't yet signed his Advanced Medical Directive (His accident was on a Saturday and literally Base Legal called me Monday to let me know it was ready for his signature). Without this document in place he left our lives in the hands of his family as his sister took over. All I could do was support and love him as best I could as his girlfriend. For the first three months he was basically in his own Happy-land and doesn't remember most of his initial recovery. But I lived it, I lived it every single day for the both of us. Once he began to come out of Happy-land, decisions had to be made as to where he would live and who would care for him. I had to jump through hoops to prove he belonged home with me so that we could rebuild our future. I had to attend training, meet with a psychologist, and do an EXTREME HOME MAKE OVER to prove I was worthy and capable of this huge challenge. So because of the Rider's Choice, Paul actually CHOSE FOR ME as well. He chose that I would now be his full time care giver, chauffeur, nurse, maid, chef, teacher, personal trainer, speech therapist, occupational therapist, physical therapist, accountant, administrative assistant, building maintenance crew, gardener, verbal punching bag and even his own brain. I used to joke with Paul I wanted to be a kept woman. When I made the joke I was thinking pool side or on a yacht with cute cabana boys bringing me cocktails and Bon Bon's! I never meant like this!!! I have been yelled at, spit on, hugged, loved, stressed, kissed, held, pushed away, married to and threatened to be divorced from, and called many names that don't include my own. I have been called Mum, Dammit, Barb, Jesus Christ, Chris, Sue, etc. All because he didn't wear a helmet. My real Paul would never ever do anything to upset me. He would rather cut off his leg than hurt me. This TBI Paul can't help it. I get it, but it doesn't mean this doesn't hurt. That split second decision stole so much from us. Paul probably will never ever look at me with the same love in his eyes that he did before his accident. That hurts like nothing I can describe. I had to mourn the loss of old Paul and truly embrace this new guy. This new guy in many ways is the same, but really quite different. If you ask this new Paul if he thinks helmets should be law mandated. He would answer "Yes, it's serious!" Rider's Choice?!? I completely disagree. I haven't even told you how his children had to decide whether he lived or died, how the girl who caused the accident still wakes with night terrors and refuses to drive, or how it affected the whole family dynamics. Do you have someone to love you unconditionally? Do you have a spouse that can leave everything and solely attend to your new needs? Do you have a parent that can do the same thing? Perhaps your children? Or would you become a ward of the state and end up in a group or nursing home? Do you actually want to put this on someone you love? When you exercise your Rider's Choice not to wear your helmet, you are making a selfish and irresponsible choice. You might not be as fortunate as Paul. You might actually die. You might actually end up in a wheel chair. Think about it long and hard. The choice is yours but remember you are also choosing for your loved ones.