Tuesday, April 9, 2013

WEGO Health Activist Writers challenge Day 9 (Advice for Caregivers)

Today's topic is advice for caregivers professional or otherwise, I'm not sure where to begin with this topic. This past week I have been a patient experiencing things from the other side as a member of my husband's family is in the hospital.

I think the first thing I would say is to LISTEN, this applies to personal and professional caregivers, for some odd reason when you get sick people around you seem to think you can't think for yourself, and your input is no longer valid. You are no longer an educated person with a valid opinion, you are just sick and weak in their minds.  Our bodies may be weaker, we are still the same people we were before. I will admit at times I suffer from brain fog, I also know people who are not sick who can't remember things half the time.

Patients will tell you what is wrong, why they're doing what they're doing if you're listening. People spend so much time talking, telling us what we they thing we should be doing. They tell us what we should eat, how much we should eat, how much sleep we need, when we should see the doctor, asking why you do this? why aren't you doing that? The list is endless. At some point you just stop talking, because no one is listening. They spend so much time judging what we are doing, not enough time looking for an explanation. I know much of the time it is out of concern, if they would take a few minutes and ask they would know why.

Then you might find a doctor who will ignore you because of their ego. They might rush through the appointment, dismiss your symptoms, tell you "it's all in your head." My advice, if you feel something is wrong, or you're not being listened to, find a new doctor.

I would also tell Caregivers to Educate themselves on your conditions, it is helpful to understand what you are going through. Go with you to doctors appointments when you can, ask questions, research, and again listen, I know after 25 years I know more than I ever wanted to know medically. Doctors go to school maybe 8 years for a degree, I have been going 25 years. We call ourselves "professional patients."

Another things Caregivers need is patience, much of it! Put yourselves in our shoes, think about your worst day with the flu, or when you  broke an arm or a leg, how bad did you feel. Think about living with that everyday for the rest of your lives. Add to it, people judging you, people not understanding, dealing with the isolation. We have good and bad days, sometimes our moods change multiple times in one day depending on our pain levels, try to understand and be patient.

Lastly, take time for yourself, eat right, exercise, relax, find a way to get rid of the stress in a healthy way. Some days it may not seem like it, we do appreciate all that you do!


  1. I am very lucky to have universal health care here in Canada and a great GP. I fought hard to get a decent "team" of health care providers and "fired" a few of them for some of the reasons you list above.

    What you're describing is the weird belief that people who live through an experience don't get to be the experts on it. Who's the real expert on our pain? The doctor who has merely read about it, or the person who has lived it? I vote for the latter. This has been an ongoing complaint for me.

    I also go nuts when people tell me how I should think and feel about my pain. People who have never experienced anything like what I'm going through feel it's their right to tell me to "think positive" and my pain will just away. This makes me really angry. Who made them the experts, and what gives perfect strangers (taxi drivers, people on the street) the right to tell me how I should think and feel about my own body?

    1. It took me 14 years to find the "right" Rheumatologist for me. I've been lucky as far as my GP goes, she is great. I agree, however everyone seems to think they are the "expert." We can't possibly be in "that much pain" at least my new rheumie doesn't have to see swelling to know I'm in a flare.

      We can only hope one day people will wake up, if not we just ignore the ignorant and go on with our fight. We have the support of those who do understand to get us through the bad days. That's enough for me.

  2. I have to go into work today (I mostly work from home). A co-worker called to tell me the elevator is broken and to give me an idea of how to get my special chair up the stairs. That was so sweet! Some people DO get it.

    1. That's awesome! It makes my day to hear stories like that, I hope you made it up those stairs safe and sound!


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