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Le Prompt: Write about your advice for someone caring for a patient with your condition
Oooooh, nice one daily prompt! I feel like half of these prompts are list making filler posts, and then BAM, they hit you with an emotional jab to the kidneys.
Remember yesterday, when I said I had a hard time accepting help gracefully? No where is this more apparent than in my relationship with my caregiver. When I'm feeling sick, I'm like a wounded bear-I don't want to see or do anything, I just want to hunker down in my bear cave and make piteous bear moaning sounds and be alone with my pain and discomfort. I don't want anyone calling the bear cave with cheerful life updates; I don't want anyone stopping by to have a chat and some bear tea. I just want to curl up into myself and shut out the sights and sounds of the outside world. If you poke me in this state, if you try to have a conversation or ask me if I'm feeling better or try to give me bear advice, I will probably growl at you and chew on one of your limbs. It's not an attractive quality, this lashing out, but it's all that feels right sometimes.
Doesn't this make me sound fun!? I'm not always like this, of course, just like I'm not always in the midst of a flare. But on my worst days, sometimes I just want to be left alone.
My caregiver provides me with many useful things: Gatorade, new magazines, emotional support....and, after an adjustment period, space. We use a lot of "I'm feeling______" statements to avoid confusion and frustration. In the beginning, I took the support I was receiving for granted, and didn't focus on the effect my diagnosis was having on my caregiver. With the perspective of a few months time, however, I can see that we share many of the same frustrations, and I can appreciate what a gift it is to have someone who cares enough to, well, care for this bear of a Crohn's patient.
If I were to give out advice to other caregivers, based on my experiences with my own, I would say:
1.) Get some support. Take care of yourself; find someone to talk to.
2.) Educate yourself. Ask to go to doctor's visits, if your patient allows. Understand what treatment options are available, and their risks/benefits.
3.) Be patient. We're going through some shit-we may need extra time to process all of our FEELINGS, or make decisions about our health. Our disease is unpredictable, and our emotions might be too. Give us the time and space to make the choices that are right for us and figure things out on our own.
4.) Don't feel the need to be relentlessly cheerful or uplifting. It's not your job to be Captain Sunshine.
5.) Be supportive, but don't nag or preach. Look, we know we need to take our B-12 supplements. Picking up some extra at drugstore so we don't run out? Supportive. Placing a variety of B-12 pills in our lunchbox? See bear attacks, above.
6.) Realize that as much as you can learn about this condition, you will never know what it's like. You can empathize, sure, but we are experiencing painful and unpleasant symptoms for which you probably don't have a frame of reference. Respect that, and don't try to minimize our experience.
7.) Take our lead when disclosing our condition. Are we shouting our diagnosis from the rooftops? Great, you can include it in the Christmas newsletter. Are we only telling close family and friends? Then you probably shouldn't tell your physical therapist, barista, bank teller, or dry cleaner.
8.) Take advantage of the good days. If we're feeling great, it's a good time to go on a field trip. Pick something you both enjoy and get out of the freaking house.
9.) Take time off. Look, no one signed you up for 24/7 house arrest. There is no one right way to be a caregiver, but neglecting your own needs is certainly not the best way to do it. Unless your patient is hospitalized or in dire need of your medical attention, taking time apart will be good for both of you.
10.) Tell us what you need. Really. Set some boundaries. Ask us for support. Ask for information.
That's not a comprehensive list, of course, but a good place to start. I think a lot of people hear the term "caregiver" and think of a mother taking care of her elderly mother, or a husband taking care of his elderly wife. That kind of care giving is all encompassing and often a full time occupation.
The relationship I have with my caregiver is, for the most part, just a normal relationship, with the added bonus of some extra emotional support and encouragement. It's not all Crohn's, all the time. There are some physical needs, of course: I know this person will take me to get my colonoscopy in a month, sit in the waiting room, steer me towards the car, drive me home, and point me in the general direction of my bed. But on a daily basis, illness and Crohn's don't always even come up in conversation. What is vital is that I know that I have someone who cares about me enough to listen to my concerns, ask questions, act as a sounding board for difficult decisions, and sometimes just hold my hand. I am grateful for the unconditional support, and I offer it in return.
When I have the desire to growl and maim, I try to keep this in mind: I am lucky to have such a person in my life, and they deserve my respect and my thanks. That thought keeps the bear a little calmer.
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