Confessions of a Caregiver

I have a cold.

I NEVER have a cold; I am unbelievably blessed with good health. But I have a bad, cough-until-your-ribs-hurt, stuffy-head-and-I-ache-all-over cold. I would love a day to lie on the couch with the remote, while my husband brings me chicken noodle soup and fluffs my pillow.

What I will do instead, is take him to his scheduled chemo appointment, walk the dog and take care of everything that needs to be done around here. Don't get me wrong; my husband is my best friend, the love of my life. That he is even here on earth is a testament to his faith in God, his incredibly gifted doctors and their staffs, a selfless individual who volunteered to be a bone marrow donor, a loving family, the most incredibly supportive friends and his own stubborn Irish disposition.

As a caregiver, your needs come second. That's the way it has to be. I have sat by Tim's bedside through seven years of chemo (why we didn't get a second opinion amazes me now), his complete bone marrow failure, more chemo, a bone marrow transplant, the never-ending battle of graft-versus-host disease, etc. I did this while holding down a full- time job, as I carried our health insurance when he could no longer work.

I have learned to do things I didn't think I could ever do. I was never trained as a health care provider, but the longer you care for a loved one, you learn to do what has to be done. I can hold a wet cloth to his head while he is sick over the toilet, or clean his PICC line after being taught by a home health nurse and most of all I have learned to trust my instincts when it comes to Tim's medical care.

BUT, as a caregiver, you can also feel like a second-class citizen. I know better than anyone how much my husband has suffered. I also know how it feels when we walk into a room and everyone yells, "Tim's here!" Inside I would like to say, "Yup, and so is Nancy." When you run into people and the first thing out of their mouths is "How's Tim?" I truly appreciate that people care. We had so many people praying for him, and I truly believe that is one of the reasons he is still here on Earth. But it would be nice to have a conversation start with questions about something other than Tim's health. I think even Tim gets tired of the questions.

As a caregiver, you can't put your own needs first. It has been 10 years of putting Tim's health needs first. Those of you who are wives and mothers know that you most likely haven't put your own needs first for far longer than that. That is the hand caregivers are dealt. People who have never been a caregiver can't understand how it is to lie in bed at night as you prioritize you next day, making sure you have all the bases covered. To schedule doctor appointments around your work schedule, pharmacy pickups on your lunch hour, etc. There is a never-ending worry in the back of your mind wondering what the next day is going bring.

And worst of all is watching the person you love suffer. There are so many days you want to say, just give me the chemo this week and give him a break. Also, having a friend(s) or a relative who understands what you are going through and is just as concerned about the caregiver as the patient is invaluable. Just getting a text saying that they are thinking of you or would like to grab a quick lunch to let you vent is invaluable. When everyone is asking how Tim is doing, it meant the world to me that someone asked how I was doing.

I know how fortunate we have been, how blessed we are that Tim is even here. But knowing that I could share that I was having a hard day meant everything to me. Because of these special friends, I hope I have learned to be a better friend. As much as I wish my role as the caretaker would end, that we can just go on with a "normal" life, I also know that as Tim's caretaker, I can take some of the credit for his being here. Tim would be the first to tell you that. He never fails to tell me that. Having him say that means more than everyone asking, "How's Tim?"

But I would still like that bowl of chicken soup and my pillow fluffed.

Share Your Thoughts

Have you been a caregiver? What was your experience like? As a patient, how did you rely on your caregiver(s)? Share your comments below.