Caregivers!! Please be gentle.
by Kara L.C. Jones

This article is a response written after a bereaved mom contacted me when at her wit's end with her medical caregivers. While her story is just one story, I have heard variations of this story many, many times. So I'm here, writing again, pleading with you to ****Please Be Gentle****!!!

This mom lost her last baby at birth and almost died herself. There were many physical complications for this mom and she was in a coma for several weeks after her child's birth and death. In the years, since then, she has endure overwhelming amounts of physical pain during ovulation and her menstrual cycles. This mom's case was used as a "medical study case" so every caregiver far and wide in her area had heard about her story. She had worked intensely with at least three caregivers to try and figure out why her body was experiencing pain, heavy bleeding each month, and other complications.

Most recently, she began working with a woman doctor who this mom felt really could understand her situation. This mom wanted very much to find answers and possibly cures for what was happening to her physically. She was exhausted from having three weeks a month where her life was "relatively normal" and being absolutely unable to do anything during her menstrual week. She was hoping to find answers, not only for her physical self, but also for her own sanity -- these monthly painful reminders brought concerns for her and her family who were always brought back to the moments when their child died and the mom almost died, too. This mom and her family wanted to be sure she was okay, to know that she is physically healing okay, that she could feel healthy again -- without monthly debilitation.

Now, this woman doctor was, at first, extremely thorough. She seemed to listen. She seemed to do every test under the sun. She seemed able to think outside the box to try and find things that previous doctors had simply "cluck, clucked" away. After months of building up trust with this doctor, the mom went in for some "results." And the mom was BLASTED away by the attitude and "answers" from this doctor.

Listen to me closely:

This doctor determined that this mom was having these complication simply because her child died, because she was still grieving, and because she mentally couldn't be "just grateful" for the living children she had but instead grieved her dead child and grieved the fact that she could not have more children.

Did you hear that?

This mom physically cannot have more children. Physically bleeds heavily. Physically has pain one week a month. BUT THIS DOCTOR'S ANSWER WAS THAT IT WAS ALL IN HER HEAD BECAUSE SHE WAS STILL GRIEVING HER DEAD CHILD INSTEAD OF JUST BEING GRATEFUL FOR THE CHILDREN SHE HAS.

WHAT?!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, this article is me, screaming my head off for this mom! Let me tell you, that  I f!@#$&*) hate it when doctors can't find answers and so decide it is time to blame the patient -- adding guilt to the already existing physical problems by telling us we are doing it to ourselves. It's like the freaking people who say cancer is from negative thinking! So the ones who can't be cured are sure left wondering why they just can't think more positively and heal themselves??? ARRRRG!

In terms of doing something pro-active, I told this mom that with HIPAA in place now, she has every right to demand to see her FULL medical record including all doctor's notes. I suspect that one of the doctors along the way wrote "complicated grief" in the file, and so every doctor she deals with resorts to that "grief answer" when they can't find real answers!!!!!!! I encouraged her to file a formal complaint, to talk to the Ombudsman. I encourage bereaved parents to make their caregivers accountable for this kind of unacceptable care!!

In terms of speaking straight to caregivers here, let me tell you that there are a growing number of people out here who feel it is downright unethical for a doctor to blame the patient for their illnesses when the doctors can't find the root of the cause. And resorting to telling bereaved parents that physical complications are all in their head because they are "STILL grieving" is just plain, old BS!! Closure is for those who died and are buried! Closure is not applicable to those who continue to live and love and miss those who have died. Closure is BS, too! And if you have a patient like this mom who clearly has PHYSICAL things happening, then this kind of "it's all in your head" answer is completely unacceptable!

Now, even if -- and I am in NO WAY saying this is the case here or ever -- but even if grief is related to the physical complications in some way, an M.D. has ZERO CREDIBILITY in giving bereaved parents this kind of answer because M.D.'s are NOT trained in Thanatology!!! If you are a medical caregiver and really believe it is all mental, then you tell the patient you want to keep digging for answers physically AND you want to make a referral to someone who could offer complimentary mental/spiritual health treatments. You validate for them that you believe them AND you get further help for them. BUT YOU DO NOT SIMPLY SAY, "SORRY, IT'S ALL IN YOUR HEAD AND I CAN'T HELP." That is simply unethical and disgusting! You shouldn't be practicing medicine if that is the kind of answer you give!!

And let me also say that I CANNOT FREAKING BELIEVE -- and I'm just off my rocker here -- that this doctor confronted this mom about why she is upset over not having more kids and told this mom to be grateful for the living kids she has!!!!!!!! My response to this doctor is this:

"So if we cut off both your thumbs and pointer fingers, you'll be grateful because you still have six other working fingers, right???" 

No doctor has the right to make a bereaved parent feel guilty for 1) still aching for their child who died and 2) for wishing they could have more children without risk of death for child and/or mom. Even if they think the patient should "just be grateful", the caregiver should keep that opinion to themselves!!! If you as a caregiver can't get past YOUR HANG UP about this, then you need to find a GOOD referral for the patient to find decent, sensitive care!!

It totally and completely stinks that bereaved parents have to advocate for themselves when caregivers should be helping -- I know it. But I just firmly believe it is ethically and morally wrong that -- even if this doctor didn't mean to do it -- doctors create situations where the patient leaves their care feeling guilty ON TOP OF still being physically compromised!!! It is wrong. The first tenant of health care is DO NO HARM. And I'm sorry, but whatever this doctor's intention was, from gauging the mom's response, this doctor broke that tenant!! She might want to think about finding a new profession where she won't hurt people!!!!

So take this as advice for all of you who are caregivers:

PLEASE BE GENTLE.

About the Authors
Kara is a freedom fighting guerrilla artist who has recently taken to henna as a solace and form of expression. Check out her new site at: HennaHealing.com