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.