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Caregiver Awareness Month

"Some people care too much. I think it's called love." --Winnie the Pooh

November is caregiver awareness month. Those of us with Inflammatory Bowel Disease have all had caregivers to some degree at one point or another. Husbands, wives, Moms, Dads, siblings, grandparents, nurses and doctors; they've all been caregivers and helped us get though some of our darkest moments. 

These people are sometimes on the front lines of our diseases. Making sure we're comfortable, getting us to our appointments on time, making sure we take the medicines we're supposed to, etc. Unfortunately, I feel like they are oftentimes overlooked for the work they do. If your caregiver is someone close to you, such as your mother or spouse, watching you suffer is one of the hardest parts of their "job."

Cindi Brooks of Fighting Flare agrees, "Hands down, the hardest part of this has been watching my daughter suffer." Cindi, whose daughter was diagnosed with Ulcerative Colitis at six years old says, "Every tear she has shed, every moment of pain or discomfort she has felt has been a dagger in my heart. I wish I could trade places with her."

My husband, David, agrees. "It's hard watching someone you love suffer," he says, "The feeling of helplessness, being unable to comfort that other person is almost unbearable. We spent months trying to find a way to calm the flare, to solve the problemI think I even stood on my head and did an IBD rain dance. That didn't work."

Ken McKim of Don't Punish Pain points out another harsh reality of being a caregiver--the social aspect! "I have learned to be more patient than I ever thought possible. One of the difficult parts was learning to take a 'let's see what happens' approach to our social calendar." Ken's wife, Corina suffers from many illnesses including Crohn's Disease. Corina was diagnosed in 2011, but she's been suffering since 2008. Ken says, "I've learned to not feel guilty when I go out and do things by myself, and she in turn has learned to not feel guilty when she can't accompany me."

Everyone needs time to themselves, and I think that's something that a lot of people suffering should realize. Coming from the perspective of watching my husband be confined to the house because of my illness has been something that has always weighed heavily upon me. He has done so much for me and sacrificed so many fun social opportunities because he felt obligated to stay with me and make sure I'm ok.

There were many times that I encouraged him to get out and do something but he refused because, "it didn't seem to be right" for him to go out. "I'm not knocking any caregiver that takes some time for him/herself. It is desperately needed. But I approached it in this manner: I made a promise to this woman to stay with her in sickness and in health. I was fortunate, though. I had a room upstairs that I could go and work on projects for a few hours and so forth. She was in the house doing her thing and I was close by. It worked well and it was enough."

This past Christmas, sick, on Prednisone and in the midst of a raging flare, I was hospitalized for severe dehydration. I couldn't keep any fluids down. It was the first Christmas either of us spent away from our families. Not an easy thing to come to terms with! 

There are a lot of naysayers and skeptics when it comes to chronic illnesses, but the caregivers have come to realize that it's not as simple as it appears to be. Cindi says, "I think there's a lot of confusion about the difference between remission and a cure." Cindi realizes that although her daughter is symptom-free at the moment, "she could flare again at any moment." 

People with inflammatory bowel disease are often given "advice" on how they can improve things if they just changed their outlook on life or their diet. While we understand that many are just trying to help when they give us advice, we also wish they knew that it isn't that simple. It's true that there are a few who were able to get their symptoms under control by making diet changes (such as Cindi's daughter), for many of us, it's just not that easy.

"It's laughable," says McKim, "because if it were really that simple, there wouldn't be millions of people the world over suffering from these diseases. If it was a matter of making simple changes, everyone would make them and cure themselves straightaway." 

My husband and I both suffered through diet changes as I attempted to pull myself out of my most recent flareup. We have since learned, as many others have, that our diseases are all very individualized. What works for one person, may not work for another.

"If it wasn't our diet, it would be meds (...) or something else." Cindi says, "There are no free rides with chronic illness." 

Ken adds, "The reality is, that these diseases are all very complicated; no one is sure what causes them, and no two patients are the same."

People like Ken, Cindi and my husband, David, are out there fighting every day. They make selfless sacrifices in order to make sure we are ok. There are times, that my husband snapped under the pressure. Times he just wanted to give up. I was unkind to him, out of my own frustrations. I took things out on him. I yelled at him--said the most awful things to him, but eventually, I came to my senses and realized that it wasn't his fault I was suffering. It was just something that we had to accept and deal with moment by moment. 

Your caregivers are there because they love you. They have a real compassion in the way that very few of us could understand unless we ourselves have been caregivers at some point in our lives. These people are true heroes and have a strength that I hope never to have tested. Please try to remember that they are people with needs, too. Remember that they are only looking out for your best interest. Let them have their moments, or days of frustration, because they, too, make sacrifices on our behalf. Take some time this month (and throughout the year for that matter) to step back and appreciate what they do for you. Thank them. Let them know that you understand the sacrifices they make. Do not take your caregivers for granted.

If you are a caregiver, here are a few links for resources and support:

Caregiver Action Network
Southern Caregeiver Resource Center
National Caregivers Library

You might also be interested in reading a few books about being a caregiver and coping with being a caregiver. 

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