Survival Skills For The Weary Caregiver

Last week I watched my nephew and my niece’s boyfriend riding a paddleboard on some very wavy water.  They balanced and paddled and battled the waves, both enjoying the challenge.  Every time a wave would knock them off they would get back on the board and try again.  I was ready for a nap after just watching them for thirty minutes.  They were determined and up for the challenge.  Eventually they got tired and hauled the board back to shore.  Oh to be young again!

As I watched them I was reminded of the number of times I was “knocked off the board” as we cared for David.  There were days I jumped back on the board as easily as Andrew and Andre did, ready for the next challenge.  But there were many other days I was knocked off and felt as if there was no way I could get back on the caregiving paddleboard again.  I would watch another ability disappear, a friend no longer calling or stopping in to say hello, a fall, an aide calling at the last moment to say they couldn’t work leaving us to cancel a night away and I felt like giving up.  I didn’t have the strength nor endurance to get back up again.  Unfortunately I didn’t have the choice of simply saying, “Hey I’m tired, let’s call it day and go get a beer!”  As David’s dad and caregiver I had to press on in loving and caring for him.

Over the thirteen years of caring for David, Brenda and I developed some practices that helped us get back up when we didn’t feel like we wanted to or felt so overwhelmed we couldn’t.  Here are a few that I hope will help you:

  • Take one day at a time! 

The moment you add tomorrow or next week’s challenges to today’s struggles you are guaranteed to be knocked down.  Guaranteed!   You have enough in your bucket with today’s “waves” so why add tomorrows IEP meeting, next week’s doctors appointment, or who will be your child’s teacher next year?  Worrying about something that is going to happen in the future that you have no control of until it comes is a wave you can not paddle through or conquer.  I like how Jesus taught this same principle in Matthew 6,

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”

Did we always succeed?  No.  But as we practiced living and embracing and enjoying the day, we always did much better.

  • Cling to what you know to be true! 

Very often when the waves of caregiving are high and scary we can easily loose perspective and get disoriented.  All of our energy and attention are focused on the waves and not on the person we are caring for.  When this happens we are prone to believing lies about ourselves, God, and even the one you are caring for.  So Brenda and I had two or three bible verses that we held tightly to to remind us of what is true.  Here are a few that really helped us.

  1. God is our refuge and strength, an ever-present help in trouble…He says “Be still, and know that I am God. (Psalm 46:1,10)
  2. Do you not know?  Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:28-31)
  3. Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” (Mathew 11:28)
  • Always believe there is nothing more important than what you do as your child’s caregiver!

I believe with all my heart that David was entrusted to me by divine appointment.  I had the privilege to be his dad.  I fed him, bathed him, taught him to ride his bike, read to him, and disciplined him as a child.  Little did I know that later in his life as an adult I would still feed him, bathe him, give him rides on a tandem bicycle, read to him, and at times discipline him as a little child.  Everyday we reminded ourselves that there wasn’t anything more important than loving and caring for all three of our boys.

So tomorrow when you set up the feeding tube for your son, remind yourself there is nothing more important for you to do.  Tomorrow when you daughter needs a diaper change, do it knowing that there is nothing more important than meeting her need for a dry and clean diaper.  Tomorrow when your son throws a fit in the middle of Tops grocery store and everyone is gawking, remind yourself there is nothing more important than helping your son know he is safe and that you are there for him.

How many times have the waves knocked you over this week?  Seven?  Get up and stand up!  You can do it.


My Final Letter to David

For the past four weeks I have shared some very personal letters I wrote to David.  As Brenda helped edit my posts she would often quietly cry as she was reminded of the joy of being David’s mom yet also the pain and struggle of watching her son lose so much.  I am so glad I took the time to stop and write.  To be honest I don’t think we would have remembered much of those days.  It was such a privilege to care for David and to be his daddy.  Maybe today you could take two minutes and jot down something about your day as your child’s parent and caregiver.  It doesn’t have to be long.  If you need a little assistance, here is a good website that may help you: http://dailycaring.com/6-benefits-of-journaling-for-caregivers/

The following is the last letter I can find that I wrote to David after he passed away.  I am grateful for the hope of seeing him one day again!

Dear David,

Today marks three months since you left this world.  How fast the time has flown.  I can only imagine you are still exploring the beauty and wonders of heaven.  It excites me to ponder what you are enjoying the most.  Is it your vision?  Is it being in the presence of your Savior?  Is it your new mind and body?  Is it sitting around talking with Grandpa, Melody, and others, listening to their stories of adventure, faith, pain, coming to faith, and the daily new discoveries of heaven?  Sometimes crazy questions enter my mind like, “Have you run into King David yet?”, or “What color eyes does Jesus have?”  Whatever you are doing I rest knowing you are whole and happy.

David, I want you to know that we are doing OK.  The first couple months were hard but we were so grateful your suffering was over.  Now we just miss you.  There isn’t a day someone doesn’t ask how we are doing, tell a story about how your life impacted theirs, or we don’t start laughing about one of your many crazy antics.  Thankfully our faith has helped us to keep strong.   I was reading two days ago and came across this verse in 1 Thessalonians 4:13,

And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope.

While we grieve David, we do not grieve as those who have no hope!  So don’t worry about us.  We continue to look for ways to use what we learned from loving and caring for you to serve others.  I miss you and love you.

Love,

Dad

PS: Hey Buddy, do me a favor and give my father a hug from me.


Dear David I Feel Helpless Today

One of the battles I struggled with as we cared for David was a sense of helplessness.  I couldn’t stop the disease from progressing, I couldn’t make David’s pain go away, and I often felt I was failing as a father.  A dad’s job is to protect their children from harm.  Sadly there was nothing I could do to protect David from the claws of Batten Disease.  I am grateful for my faith that would often remind me that while things feel and look like they are completely out of control, there is a God who is still in control.  He was my refuge when I had no where else to turn.

“Oh my people, trust in him at all times.  Pour out your heart to him, for God is our refuge.”  Psalm 62:8

Dear David,

Wow, what a rough two days.  In fact I would say they were the roughest we have had since you were diagnosed.  Dr. Mink thinks he went too high with your Triliptal and boy did it have a huge impact on you.  I don’t know if you remember, but you were in physical and emotional pain.  You were angry and constantly upset.  You didn’t know where you were.  You kept saying, “I just want to go home,” or “I want to go to jail.”  You didn’t know if you wanted to sit, lie down or walk.  You didn’t like it when people touched you.  It was horrible David.  Two nights ago it took you almost two hours to settle down and go to sleep.  Last night you slept well and today you seem much better.  David, I was so afraid for you and what else is before us.  I wanted to be brave, I didn’t want fear to overwhelm my faith in God, but it was too much.  I hated seeing Daniel and the emotional pain he was experiencing.  I hated knowing the struggle Brenda, your Momma, was experiencing, and there was nothing I could do about it.  I was helpless.  

I prayed for you.  I asked God to turn his attention to you.  I asked him to pour out his blessings on you.  I asked him to take away your pain.  And while I know God heard me, loves me, loved you, I still felt helpless.  I am still struggling with just feeling sad.  I can’t shake it.  I’m supposed to preach next weekend and I am a little concerned about my emotional state.

I miss your laughter David.  I miss your kidding around.  I miss seeing your smile.  I had a little peak into what it will be like in the future and I don’t like it.  David I chose today to acknowledge God is in control.  I claim and acknowledge that God is good and loving.  Well buddy, it is a quiet Saturday morning.  We have changed you a couple times already this morning.  Dan Edsall is coming to hang out with you.  I hope you have a good day.  I love you buddy.  Daddy

 


Dear David, I’m thankful for your Mom!

One of the greatest blessings I have in my life is my wife, Brenda.  For 33 years we have enjoyed the highs and lows of living together in this beautiful yet broken world.  By far the greatest challenge we have faced together was watching the devastating effects of David’s disease and his ultimate death.  It rocked our relationship with each other and our relationship with God.  Often at the end of a day caring for David we had very little left over for each other.  It wasn’t that we didn’t love each other.  We just didn’t have anything left to give.  Our tanks were empty.  As I look back, I wished I would have done two things more consistently:

  1. Tell her I loved her more often
  2. Prayed for her to experience and believe in God’s love for her and David

Maybe today you could do these two things for someone you love!

Dear David,

This morning you woke up having totally wet yourself, the bed, sheets, and blankets.  What is surprising is you had no idea you had done it.  These are new waters for us.  Your Mom was so good at getting you to the bathroom and getting you cleaned up.  You are so blessed to have her as your Mom.  She loves you so much.  I remember being embarrassed for her when she would see you buck naked.  I still feel a twinge of discomfort for her, yet she is really OK with it.  Sometimes I watch her in awe as she cares for you and organizes your aides.  She never complains, she is constantly looking for better ways to meet your needs, and counts it a blessing to be your Mom.  David, if and when you pray for Mom please pray she connects with God in a special and intimate way.  Being honest, your disease really has challenged our faiths in different ways.  I want Mom to be overwhelmed by God’s love for you and for her.  Sometimes she is too hard on herself.  She is such a blessing to me David.  I don’t know how I would be able to do what I do without her.  I need to tell her I love her more.  I am blessed to care for you with her.  Well buddy, I want to read my Bible.  When I’m done let’s jump in the hot tub.  I hope you will have the strength to get out.  The last few times have been difficult guiding you out of the tub.  Love you Buddy.  Dad.


Dear David…

For the next four weeks I am going to share some letters that I wrote to David near the end of his life.  One of the greatest struggles I faced as David lost more and more of his cognitive abilities was my inability to communicate to him my how much I loved him and ached for him.  I decided to start writing him letters that allowed me an opportunity to share what I was feeling and experiencing.  He never heard them or had the ability to understand them.  They were more for me than they were for him.  Writing became a way for me to vent the emotion and pain of watching my boy slowly leave me.

Dear David,

Today we are going to Rochester with you to see Dr. Mink at Strong Memorial Hospital.  He sure is going to see some major changes.  I have to be honest that the hardest one for me has been your inability to enter into any type of give and take conversation.  I wonder what you are thinking that you can’t express.  I wonder what funny thought or joke passes through your mind.  I wonder how many times you have wanted to ask a question or ask for something but you can’t get it out.  I wished I could help you son but there nothing I can do.  Your Mom and I have feared this step in your disease for years, and here it is.  I get some peace knowing God understand everything that passes through your mind and that Battens does not limit his ability to communicate with you.  I pray when your hear Mom and Dad say we love you that you understand that.  I pray that God would protect you from the hurt of people slowly backing away from you because they don’t know how to talk with you.  I love you David.  I love your impact in my life and in many others.  Hope you have a great breakfast with Dan Edsall.  Don’t forget to pray that Daniel does well on his math final.  Love you Buddy!  Dad

(This is the letter I wrote him the next day.)

Dear David,

The trip to Rochester was long wasn’t it?  I sure am glad we had a good dinner together with mom at Carabas.  The meeting with Dr. Mink was hard for me David.  Since our last trip you have lost so much.  You tried your best to follow the doctors requests but you couldn’t.  He would ask you to open your mouth and you would put your finger in your mouth and suck it.  I was proud you tried your best but so sad you couldn’t follow his instructions.  You didn’t seem bothered by it which I thank God for.  We talked openly before you about your loss and the changes we have seen and you were unaware of what we were talking about.  You played with the little fuzzy worm Dan Edsall gave you saying over and over again you were hungry, where are the girls, and when will we be done.  The doctor said you will see most likely the same amount of loss over the next 4-6 months.  That sure hit me and mom.  Don’t worry though David, I rest knowing God will give us everything we need to love you, take care of you, and walk you through your journey with Battens.  David, mom and dad have never told you that there is no treatment for Battens and that it is going to take your life.  I hope we made the right decision.  Sometimes we would wonder if you knew.  I guess we can talk about that in heaven.  You have lived your life to the full David and you have taught me so much.  I hope you have a great day Buddy!  Love Dad.

 


Are You a “Leaker” Or a “Gusher?”

My daughter-in-law, Brittney is from California.  She pronounces apricot as “āprəkät.”  I pronounce it as “aprəkät”  Who is right?  We both are!  There is no right way.  No matter how you pronounce it, they are delicious.  The same can be said for the way we process and deal with grief and pain.  Some people store it and stuff it; others express it and share it.  Some people allow their tears to flow freely; others hold them until they can no longer be contained.  Who is right?  The following is a blog I wrote seven years ago, three months after David died.  I am a “leaker.”  Brenda is a “gusher.”

Monday, January 18, 2010

I’m a leaker, she’s a gusher

Brenda says I’m a leaker.   Yes I know the word doesn’t exist in the dictionary, but it is still a good word to define one of the ways I am dealing with my grief.  For little to no reason at all, on a fairly consistent basis, my hazel eyes will begin to water and slowly leak tears.  I don’t cry inconsolably, I don’t cry for long periods of time, I just simply leak.  Saturday I was carrying down Christmas decorations to store away for another year and I saw David’s walker and wheel chair stored in the corner of our basement and I began to leak.  This morning I read a friend’s Facebook status that said,  “another Batten Disease little one passed away last night” and again I started to leak.  I sat tonight and listened to my son share his struggle dealing with his brother’s loss and you guessed it, I started to leak.  Leaking has become a normal part of my life.  A few tears escape, a quick wipe with the back of my hand or a tissue if I am lucky enough to have one on hand and on I go with life.  It keeps things from building up in my life.  It gives me an immediate way to release my sorrow.  So if you see my eyes fill up with tears and slowly begin to leak onto my cheeks, I’m OK.  I’m just releasing some of the pressure that is building up in my life.

Brenda on the other hand is a gusher.  She stores up her tears until she can’t hold them back anymore, and then she hits the release button.  She wrote the following in her journal;

“As I sit here tears are flowing from somewhere deep inside me.  The dam has been breached and the tears that have been held back for weeks are beginning to leak out.  Memories come and trigger the flow.  Fears of future loss trigger the flow.  Thoughts of other’s pain triggers the flow.  They have been gathering and waiting to be released.  Like in our creek, life flows on like the water and brings with it broken branches, leaves, and other refuse, trash thrown out by passerbys, rocks dislodged.  They hit a bend in the creek and trap the various items carried by the “flow of life.”  They begin to build up until the water is restricted.  The flow is stopped until the pressure is so great it either finds a new path or dislodges the plug in the dam.  It works the trapped refuse free and pushes it along until once again the water flows freely without resistance.  That is how I deal with my pain and all the broken bits of my life.  They jam up as a dam until somehow the flow of life triggers a release, pierces a hole in the dam.  Lord, thank you for the tears.  For walking with me through the sadness and loss.  For letting me be able to feel.”

As I have thought about our two different approaches I am reminded that there is no one correct way of dealing with grief.  Leaking is no better than gushing, and gushing is no better than leaking.  They are just different ways of releasing our sorrow.  We are still learning how to accept and allow each other the freedom to process our grief in our own ways.  As Daniel reminded us this evening, “We need to give each other some slack.”

No matter whether you are a leaker or a gusher the following verse from the book of Psalms is true:

“You keep track of all my sorrows.  You have collected all my tears in your bottle. You have recorded each one in your book.”  Psalm 56:8

Which are you?  A “leaker” or a “gusher?”


Alajuelita: Costa Rica

As you are sipping your coffee reading this blog Brenda and I are in Alajuelita, Costa Rica with our wonderful church, Turning Point Church on a short term mission trip.  We are joining with a local church, Iglesia, Cristiana Alajuelita, to help build a home for a wonderful family.  Karolina and her four children live in a rundown shack that has no floor.  We will pour cement, build walls, run wires and lights to show her the extravagant love of God.

Many of my friends have asked me why we chose to go on this trip with all the other things we already have on our plate.  Let me share a couple of them with you.

  1. Community: Brenda and I are still trying to get used to the fact that we are now “Floridians.”  We realize the best way to accomplish this is to begin building friendships and relationships with a new community of people.   A great way to do this is to join hands and serve others in need.   Here is a picture of the team we are going with.

 

  1. Service: We believe one of the greatest ways to serve Christ is to serve others in his name. There is a story in the New Testament where Jesus is commending a group of people for serving him faithfully.  He thanked them for feeding him and dressing him and giving him a cold glass of water when he was in need.  They asked him when did we do these things for you?   Look at what he says, “Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.”  (The Message)  As we serve Karolina and her children we are serving Christ.
  1. Faith: Alajuelita is one of the poorest barrios in Costa Rica. Some of the neighborhoods are dangerous, water unsafe to drink, and of course there will be a significant language barrier.  We know we are going to be stretched as we will have to trust in God to accomplish what at times seems to be the impossible.  It is all too easy to let your faith grow old and stale.  I am sure our time in Alajuelita will help freshen things up a bit.
  1. Focus: Serving others who are in greater need then yourself is one of the best ways to keep your focus on what really matters.  I am sure there are some of you are growing weary of the ongoing saga of our moving, selling homes, building homes, and on and on it goes.  I know I am!   We are praying and hoping a week in Costa Rica will “reboot” our hearts and minds to keep focused on what it really important in life.

Please pray for our safety, for our effectiveness, and for Karolina and her family to see, feel, and experience the love of God!

 

 


Transitions

Today I am believing in the phrase, “Shorter is Better!”

Tomorrow we are returning to Florida so we can pack up and fly to Costa Rica with our church on a short term missions trip.  Seven days later we return to Florida to supervise a construction project, then fly to Door County, Wisconsin for our nieces wedding.  During this time we will be unloading some belongings from our home in New York, shipping two cars to Wisconsin, and saying good-bye to our family and friends for the next few months. Transitions are tough and exhausting.  Therefore, today’s blog is going to be short and sweet!

Brenda and I would love it if you would pray for us or keep us in mind for the following things:

  1. Our family:  Saying good-bye or see you later is always tough.  We love our children and their children and miss them when we are away.  We want to have a strong, loving, and grace filled relationship with everyone.
  2. Our trip to Costa Rica:  We are traveling with our church, Turning Point Church, to help build a house for a single mom of four children who doesn’t have a home with a floor in it.  We want her to see our love and the love of God as we serve her.  Pray for safety and effectiveness as a team,
  3. Our physical, emotional, and spiritual well-being:  We are exhausted from the extended time of transition we have been in.  This of course effects relationships, energy, and many other things.  Hopefully when we get to Door County, Wisconsin we can unplug and apply what we preach at David’s Refuge.

Thank you for keeping us in your thoughts and prayers.  We would love it if you would let us know how we can keep you in prayer.  You pray for us and we will pray for you!  Text us, call us, private message us, or simply reply to this blog.  It would be our privilege to pray for whatever transition you are walking through.

 


Ordinary People Doing Extraordinary Things

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How do you calculate the value of a volunteer?  According to the Corporation for National and Community Service, last year about 63 million Americans gave 8 billion hours of volunteer service worth $193 billion dollars.  That’s a lot of money and time! Eight billion ordinary people doing extraordinary things for others.  They are not paid or coerced.  Their motivation is to simply share their time, talents, and treasures for the benefit of someone or something else.

This past Sunday we celebrated our volunteers at our annual Volunteer Appreciation party at the beautiful Owera Vineyards in Cazenovia, NY.  (Thank you Owera and Carrabba’s in Fayetteville for sponsoring the event!!!)  Gathered around the tables were ordinary people who are making an extraordinary difference in the families we serve at David’s Refuge.  Old and young, male and female, professional and retired, all there because they want to be a part of “Caring for the Caregiver.”  Some were hosts, others board members, some delivered flowers and gift baskets.   Together we pour hope and love into moms and dads who needed to be reminded they are not alone, what they do matters, and that they are loved by God.  Every person there inspired me!  These are folks who completely understand and embrace the following quotes:

“What is the essence of life?  To serve others and to do good.” -Aristotle

“We make a living by what we get, but we make a life by what we give.”  – Winston Churchill

“The meaning of life is to find your gift.  The purpose of life is to give it away.”  William Shakespeare

If you are one of our volunteers, Brenda and I want to thank you for helping our dream become a reality.  We love you and pray for all of you.

If you are interested in learning more about how you could volunteer with David’s Refuge, email Morgan Pipes, our Volunteer Coordinator, by simply filling out the brief form on our webpage.

Volunteer Form


Kate Houck: One Year as Executive Director

Last week I was talking on the phone with a potential board member for David’s Refuge who would bring great value to our organization.  During our conversation I shared how blessed we are to have Kate Houck as our Executive Director.  Without prompting, this person said,

“In all my years of working with nonprofits in the Syracuse area there have been two Executive Directors who I have greatly respected.  The first is Clarence Jordan from the Rescue Mission and the second is Kate Houck!”

Once again I say, “How blessed we are to have Kate Houck as our Executive Director!”

This past Friday we celebrated Kate’s first year as our leader.  She is loved by staff, volunteers, donors, business leaders, and the community.  She is competent, confident, compassionate and caring, and committed to excellence.  She lovingly and graciously took the reigns of leadership and has protected and promoted the mission of “Caring for the Caregiver.”  She has grown our staff, increased the number of families served, opened new territories, and supported the Board of Directors.  She is a great mom, wife, neighbor, and friend.

Once again I say, “How blessed we are to have Kate Houck as our Executive Director!”

Would you join me in celebrating Kate?  How would you answer the following statement: “I am grateful for Kate Houck because…..”  Please take a moment and reply on Facebook or this blog.  Let’s remind Kate “How blessed we are to have Kate Houck as our Executive Director!”