Tuesday, April 11, 2006

When the patient's mom has mental retardation

One of the challenges I face as a case manager for children with special needs is mothers who have cognitive disabilities.

But something that doesn't occur to most other primary care givers is this:

You have those moms in your practice, too.

There isn't one kind of face or one set of symptoms by which you can recognize cognitive impairment in a caregiver. Most of us are used to thinking about impairments as something we assess in a patient; it is harder to get our minds around to recognizing it when it is subtly present in a caregiver.

Here are some hints for those of you who suspect there may be an underlying cognitive disability in a parent:

~~Repeatedly disregards written information
~~Cannot repeat instructions
~~Has difficulty generalizing information
~~Has difficulty prioritizing
~~Reads but does not comprehend material and/or cannot remember what is read
~~Always forgets appointments
~~Never learns how to negotiate her insurance requirements
~~Has difficulty recognizing her child's developmental milestones and anticipating them
~~Is not feeding her child properly

I find many primary and specialty practices who have seen the mothers who come to my attention-frequently seen them for many visits-and who have labeled these moms as "problem moms", and have never realized they, in fact, have mild mental retardation. They come to my attention as "non-compliant", which they are. But not intentionally.

Once I was called repeatedly to come see a mother whose child had a disability and mom was not taking her to needed appointments. I spoke to mom on the phone a couple times, and always when it came time to visit, she "forgot" or "had to work". Finally, I caught up with her at her child's bedside. The child had been admitted as "failure to thrive" and the hospital staff were on the point of reporting mom to CPS.

So I came in, introduced myself, and after about two minutes realized the problem.

Mom had mental retardation.

How did I know this, when it had been oblivious to other professionals? Because of familiarity with this population, largely, but also simply because I know there are moms with mental retardation out there slipping through the cracks and so I keep it in mind.

Because part of my assessment includes a family and social history I asked about two things that often get useful information: 1) do you get SSI? If so, what disability do you have? and 2) Tell me about your school days. Were you in any special classes for reading or other things?

This mom had found her own job, and was so proud of this! She was so proud of it, in fact, that she did not ever miss her scheduled days. Not ever. Even if the baby had another appointment. She could not prioritize this, because she had not been instructed in this directly. This may seem like something you shouldn't have to do: you shouldn't have to tell a mom how to prioritize these things. But you do.

She could parrot back the nursing staff's instructions on how to feed her baby, but five minutes later, could not repeat what was said (I know. I stayed and assessed this). She could read the instructions, but not follow them.

Before beginning to work with this mom on how to prioritize appointments and work schedules, etc, I asked the nurses to make one simple adjustment in home instructions. After making sure she had a VCR at home, I asked the nurses to videotape mom feeding her baby while the nurse gave instructions. Mom took this home, and watched it as she fed, until what was being done became second nature.

I wish I could tell you this story had a happy ending, but I can't. Mom disappeared from my follow-up; moved and left no address and I never found her again.

Hopefully, she showed up somewhere.

But maybe you might recognize one or two of the moms in your own practices from her description, and think about how to adapt your teaching or anticipatory guidance, how to make sure she knows how to feed and give meds, and how to refer her to your local resources when there are any available.

It is not a crime to have mild cognitive disability and be a mom. It is just hard to do it without significant help.



Anonymous Anonymous said...

Amen from another nurse who learned the hard way to recognize the subtle signs. An example to share: as a home care nurse, I had been making multiple visits to see a baby who had been diagnosed failure-to-thrive. I weighed her several times a week, and she either lost or failed to gain. I tried all the tricks: I watched mom feed her; I fed her & she took more than the expected amount of formula; I asked how mom was making the formula & received the anticipated response. Finally, after I had about run out of ideas, I asked mom to go through her formula preparation with me. She said that she was mixing the formula "2 scoops to a bottle, like the nurses at the hospital told me to do"; I saw the standard powdered formula scoop in the sink. When I finally asked to see the bottle that she was mixing the formula in, it turned out to be a 64-oz jug, in which she was mixing the "2 scoops" she remembered from her postpartum baby class. (By my calculations, each ounce of formula contained less than 2 calories.)
I have used this example frequently when talking to colleagues & nursing students, to point out that even if you get the answer you expect from a parent who means well, you have to examine their frame of reference, too, in order to figure out if they have the ability to generalize their knowledge to other situations. This story had a happy ending, the baby girl gained weight beautifully after that, and the nurse learned to ask many more questions if something just didn't seem right.

4:41 PM  
Blogger mary said...

Great example!!!!


10:09 AM  

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