Monday, September 21, 2015

Caregiving, Care Receiving and Everything in Between

According to the Merriam-Webster Dictionary, the definition of a caregiver is, "a person who gives help and protection to someone...a person who provides direct care." Synonyms include, carer, caretaker and guardian. While this is meant in a medical sense, I see it in a different context. Anyone who protects, loves, and cares for another in anyway is a caregiver. The synonym "guardian" particularly stands out to me. I can be a guardian for my husband during this time, and even though he is bed ridden and physically unable function he is still my guardian as well. He gives help and protection to me, and in that way he has become my caregiver as well.

Becoming a caregiver has stretched my soul and my heart. It has brought me to my knees countless times, and I have cried countless tears. Sometimes I feel so exhausted it feels like I can barely think or move. But, it has also brought me unspeakable peace and an assurance that caring for someone else in their time of need is the most important thing I can do right now at this time in my life. Caring for someone is a sacred thing, and it can transcend the normal everyday experience.

Being a wife and a caregiver does not mean that it is all one sided. Adam and I are still a team. It is not his illness, it is our illness that we are battling together. This is what we do to be caregivers for each other. I felt like I needed to record what it is like for us on a day to day basis.
Karen Darling
In the morning, first thing I need to do is pray. I pray for strength for the day, for patience and understanding and for peace. Mostly I pray that Adam can have some relief that day and to help me know his needs. Then I have Adam's feeding tube set up. It is a formula that I mix together with water. The bags of formula and water are then attached to the pump with the correct settings and then connected to the tube in Adam. It takes a few hours to complete the feeding, and we have to make sure he is sitting up a little bit, or it causes heartburn and acid re flux. If we have a doctor appointment that morning, we start the feeding afterwards. There are pills that Adam needs to take morning and night. We have those nifty pill dividers for each day. It really helps us keep track. There are some medications, or over the counter pain medicine if he needs it that I crush up in a pill crusher (one of the best inventions ever), mix with water and put in his tube with large syringe. I always make sure there is an extra towel and a "just in case he can't make it to the toilet in time bowel" on his bedside. After getting him settled for the day, I head to work for a few hours and try not to worry about him too much while I'm away. :) During the day there are doctors to call, or appointments to make. There are sometimes prescriptions to refill, and lines to wait in to pick up the prescriptions. Everyday his bandage on the site where his feeding tube is needs to be cleaned and changed.

After I come home in the evening, first thing I check on him, make sure the feeding finished and see if there is anything he needs right away. I love spending the evening together. He tries to move from the bed to the couch, or a chair in the kitchen and we talk if he can or watch Netflix. Some days he is too sick to move at all, and so I keep a close eye on him and put cool rags on his forehead (that helps take the edge off of migraines and nausea). Those times are the hardest, where I need to take some deep breathes and remember that I can't control everything, but he is in God's hands. The pain of watching your loved one suffer is unlike any pain I have felt before. I am learning to take the time to deal with those emotions, and remind myself that everything will be ok. I then make dinner and catch up on chores and house work or whatever Adam needs help with. I am a stress cleaner, so it helps me release my stress a little bit. :) Because Adam is bedridden, I try to wash the sheets and blankets frequently and I also keep the toilet and bathroom clean as I can because he is forced to spend so much time in there throwing up, or trying to not throw up. Depending how much much he threw up that day, or if he is feeling particularly weak we do another feeding through the feeding tube. Nights can be especially hard as it is difficult for Adam to sleep or stay asleep with the constant nausea and vomiting. I try to help him as much as I can through the night if it is a really hard night for him. Often, he pulls muscles in his back or shoulders from vomiting, so I will rub his back, neck or head, or his feet to help him relax. Sometimes, we just hold each other.
                                                                                                            Caitlin Connolly

Even though Adam can't be on his feet right now, he does the best he can to take care of me in the best way he can. When I am in a lot of pain he will take the time to rub my legs, even as sick as he is. No matter what, no matter how sick he is, he has always been there for me when I need a shoulder to cry on. He is my best friend, and has always been perfectly accepting of me. He is constantly asking what he can do for me or for others.

He always helps me work through my pain when I am struggling, and in that way he is a caregiver for me as well.
At the end of the day we always pray together. Adam always takes the time to pray for everybody! Seriously, he names and prays for so many loved ones. And he always does it with such sincerity and faith. It is amazing to me. We listen to the scriptures and often will say what we are grateful for that day.

It is all about taking it one day at a time. As a caregiver, I often need to step back and think about just what I need to do that day, and do my best to achieve it, otherwise I get too overwhelmed. Adam helps me with that. He is my caregiver. He gives love, true empathy, patience and support. Truly, it is his strength that helps me keep going, even when I feel I can't do it another day.

We are all caregivers in one way or another. Be the guardian of the one you thought of while reading this post. Caring is having faith that you are doing all you can. It is my prayer that I can always be brave enough to care with all of my heart.

Tuesday, August 18, 2015


There are some days that feel as if the seams of the fabric of our life are falling a part. There are some days where the sorrow, heartache and pain seem to reach the very depths of our souls. But, there is one thing that pulls those seams back together. It eases the sorrow and heals the heartache. It soothes the pain. It is gratitude, and Adam and I have found it to be a healing balm and a source of comfort. Often, before we go to sleep we list what we are grateful for that day. It really helps us keep things in perspective and helps us keep a knowledge of how blessed we really are. Here is my list of gratitude.

1. I am so grateful that the surgery Adam had to have a feeding tube place went smoothly. The recovery has been so hard, much harder than either of us expected but, the feeding tube is working well, and he finally is able to get the nutrition and calories that his bodies needs to be sustained and to start healing. Hopefully this will help him not have the severe weakness and dizziness that comes from not being able physically to keep down enough food. This has given us hope, and my words can't describe the gratitude I feel for that. 

2. I am so thankful for Adam's resilient spirit. He has not complained once, and continues to amaze me and others with his love and grateful heart. 

Vincent Van Gogh
3. We are both grateful for the dedicated team of nurses and doctors that have made this happen. We are grateful for the steady and experienced hands of the surgeon who placed the feeding tube. We are grateful for the nurse practitioner and dietitian that have made sure this is the best thing for Adam. I am grateful for the dedication and care from the home health nurses as they call to check up on Adam and their patience and careful explanation as they have shown me how to set up the feeding tube, the formula and how to administer his medication. 

4. Modern medicine is a wonder to be grateful for during this time. While we don't have all of the answers right now, we trust that they will come.

5. I am so grateful, with all of my heart for the love and support of our friends and family. There have been times when my physical strength fails, and my angel mother and angel mother in law have been there to do what I sometimes can't. My parents and sweet brother came out last week to help, and I don't know if I could have done it without them. Adam's parents and siblings have been there constantly, giving both of us the love and support we need. It is a sacred and special experience to be on the receiving end of so much love and prayers, and Adam and I are constantly touched and renewed by the strength that comes from it. Sometimes, the most powerful and moving things are ones we cannot see. We can only feel them. This is one of those times, and we are so grateful. 

6. We are grateful for our wonderful apartment, and for Adam's aunt and uncle that have been beyond generous in allowing us to live there and to work through this in such a safe and comfortable place. Adam and I are grateful for them every day. We are grateful for a comfortable bed, a place where Adam can lay and heal and rest. We are grateful for his medicines, for pharmacies, for syringes, for pill crushers, essential oils, for the feeding pump and IV pole, for the formula that will give his body what he needs.

7. I am so grateful for music, a constant refuge and source of comfort for me. I am grateful for Disney movies, for the TV show Psych that we watch and can laugh and forget our problems for a minute. :)

7. There is peace knowing that God lives, that He is our loving Heavenly Father. I am so grateful that I feel peace when I pray. I am talking about lasting peace, it is not temporary, it is not fleeting. It is real, and it comes from Him who loves us. We are both grateful for the knowledge that God's timing it perfect, and that He is watching over us. We know that we are not alone. It is my knowledge of these things that has allowed me to be ok, and to be able to keep going everyday.

8. I am so grateful for marriage. That Adam and I can become one, and that we can work through this together. I know that we are stronger together than we could ever be a part. I am grateful that we can laugh and cry together. There is a healing that comes from loving someone with everything inside you, and I am grateful for that. 

It is not always easy, but recognizing and being grateful for the little things brings peace when everything around says otherwise. 

Nicoletta Thomas Caravia
"We can choose to be grateful, no matter what. This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer. When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.

Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges.

This is not a gratitude of the lips but of the soul. It is a gratitude that heals the heart and expands the mind.True gratitude is an expression of hope...It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will."

-Dieter F. Uchtdorf

Tuesday, July 7, 2015

The Story of Us

 It has been very hard for me to write about what Adam and I have been going through in the last part of our journey. With the challenges there have been many joys though. There is always more good than bad. There is always more joy to be found than pain. I think I am just going to open my heart up and share our story. Adam's story and strength need to be shared.

Adam has a rare disease in his esophagus called Esinophilic Esophagitis. It is a allergic inflammatory condition of the esophagus. Symptoms include difficulty swallowing, food impaction, heartburn, pain, nausea, vomiting and other GI upsets. He has had it since he was 13 years old. He has been bed ridden since we were married in July of 2013. He suffers with severe chronic nausea and vomiting. It is very difficult for him to keep down any food. Dehydration is a problem, so he has nutritional IV's and medicine here at home. We have wonderful nurses and doctors that work with us. He recently had a PICC line put it, which is a more permanent IV that allows Adam to receive much of his treatment at home. The suffering he experiences is indescribable. The nausea just overwhelms him, and often the vomiting is so violent that he throws up blood or pulls muscles in his neck or back. Sometimes, I am able to sit with him as he throws up and put my hand on his back, to be there for him. But, sometimes it is just too hard for me to watch him suffer. We are both grateful that I am not a sympathetic puker! :) The vomiting happens multiple times a day. Sometimes it eventually turns into dry heaving, and sometimes he feels like he can't leave sitting in front of the toilet for up to a hour even. It is times like this when we are so grateful for his PICC line and Intermountain Home Health that allows me to set up his IV fluids to help with dehydration, and also it allows us to give him anti-nausea medication through the IV that helps take the edge off, even just a little bit.

Adam also has some food allergies that tie into the Esinophilic Esophagitis. He is allergic to soy, corn and milk and is gluten free along with myself. It has been such a growing experience for me to learn how to cook and provide meals that are in accordance with his food allergies. I have learned so much in that regard, and I assure you that it is possible to have delicious and healthy meals despite having food allergies!

When we fell in love, it was the most natural and easy experience of my life. It was easy to know that he was my best friend, that we were meant to be together. I knew when we were married that we would have our share of challenges. But, there was no way I could comprehend what was coming for us. Because we had each struggled with chronic illness, we had a mutual understanding and we had true empathy for each other. I am going to be completely honest, the last two years have been a bit of a blur, late nights, hard mornings, doctor appointments, hospital visits, procedures, IV's and giving as much love as I possibly can each and every day.

This painting is by the amazing Caitlin Connolly. It is entitled "They Climbed A Very Small Mountain Together." For me, it perfectly depicts the mountain Adam and I climb together every day.

It wasn't till about a year ago that I realized that I had become my husband's caregiver. A word and a title that has such a deep and special meaning to me personally. I cry tears mixed with an aching and a reverence at the same time when I think about being Adam's caregiver. I have realized that to be able to care for someone and their physical needs, to do things for them that they cannot do for themselves is sacred and special. I have also realized that in our situation, the more love and patience I give, the more inner peace I have in my heart and my mind. I have been able to have lasting peace despite having this immovable weight on my heart, mind and body.

Adam is the most resilient person I know. He is the strongest person I know. I have never seen someone endure such great suffering, and yet he is unbroken. Despite his great personal suffering, he cares so deeply about others and being there for them. Despite feeling like he is wasting away, he will smile and talk to you as if nothing is wrong and that the only thing in the world that matters to him is you. He has been an incredible example to me of accepting God's will and enduring well, one day at a time.

In sickness and in health has become indescribably meaningful for Adam and I. It is because of the promises that we have made to each other, and to God that we are able to be at peace and still have joy in our situation. There have been tear filled days, sleepless nights, and stress and anxiety and pain and grief beyond anything than either of us have experienced before, and I don't know how much longer they will continue. But, I do know that as long as we have each other and the Lord we will be ok.

The other day we just held each other and cried. That has happened more than once. I am so grateful to Adam for his strength. He is my comfort, and he is always there for me. I know with everything inside me that the suffering we both have experienced is not pointless. It is poignant, soul moving, harrowing and heart wrenching, but never pointless and never without hope. It is full of light and love. And that means we will be okay. We will be more than okay.