Monday, November 2, 2009

Caregiver Frustration: The Gloves are OFF!

Another mother wrote to me about the frustrations she has experienced with her adult son's self-care in the area of diabetes and Home Dialysis. Oh, can I relate to this!

My husband, Steve, is the "poster child for Metabolic Syndrome." His diabetes was far out of control, with a HbAlC of ten (normal is less than six) when I first met him. His diabetes is in far better control now, with HbAlC values in the five-six range. But by the time he had his "come to Jesus epiphany," it was too late.

We knew his kidneys would eventually fail, but nothing could have prepared us for that precipitous crash when his creatinine went from four to ten in only two weeks. Steve's kidney disease, diabetes, high cholesterol, heart disease, and transplant failure should qualify me for extra Continuing Medical Education credits!

This morning when I left for work, Steve and I had just stabilized his blood pressure--from a low of 69/40! We were fortunate to have corrected the problem with oral fluids. But it's unnerving when you live on Bainbridge Island--a ferry (or airlift) away from Seattle!

It's even more upsetting when the juice boxes I'd begged him to purchase weren't there in the nightstand! He'd forgotten to buy them! And, believe me, I'd reminded him--to the point of disgust at my own nagging.

I know that Steve doesn't feel well. A friend whose husband dialyzed for nine years before his recent transplant said that her husband's best day was probably more difficult than our worst day. Maybe so. I don't have a clue what it feels like to actually have End Stage Renal Failure.

But I do get frustrated, for example, with things like this:
  • Steve forgets to buy juice boxes for emergency blood pressure and blood sugar regulation
  • Steve neglects to get a seasonal flu shot, and now--when they're harder to find, it becomes a major headache
  • Insulin needles get left on the bedside stand, not placed in the needle disposal container
  • Steve forgets to place his nitroglycerine tablets or phone next to the bed.
Should I just do these things for him? I do a lot for him already. And isn't that "enabling?"

In medical school, we learned a great slogun: "Never invest more in someone than they're willing to invest in themselves!" (I don't know the source.)

And while that slogun has helped me considerably in my work as a physician, it becomes harder to adapt for use at home. After all, if something does go terribly wrong for Steve, I, too, have consequences! If he is injured in a fall, for example, I will have to scramble to deal with the outcome, too.

So, Caregivers, how do we find that delicate balance of:
  • Being supportive without enabling?
  • Reminding without nagging?
  • Not giving up and just doing everything ourselves?
  • Taking care of our own hearts and souls so there's something left over?
  • Preserving an adult relationship with your spouse, and not feeling like you have yet one more child!
I would welcome any ideas--from "tips" to the profound. We're all in this together! Please write me with your thoughts, and I'll share our combined wisdom. Thank you and take care, Linda Gromko, MD




1 comment:

  1. Linda - I feel your frustration. I know it must feel like you just can't win.

    If the economics weren't so drastic, I'd recommend a very simple solution: a personal assistant - I'm thinking Swedish foreign exchange coed - who could just pick up the list of daily requirements, act as a gofer for both of you, organize whatever medical and personal scheduling is killing the both of you and let you concentrate on your more than full time job. It's a hell of a lot easier to have an adult relationship when you're not toting up the many ways your husband is letting you down.

    I wonder if something as simple as juice boxes is actually simple at all. Steve [and you] have faced a lot of disappointing news. In fact, the news has been relentless and daunting for a couple of years now. I honestly don't know if I would give a damn about juice boxes if I was getting pounded on a daily basis. Obviously those chores have to get done - I just don't know if I'd have the energy to care.

    One thing occurs to me: it's hard to get help from pals on the island, but my days are filled with trips to get products for jobsites. If you were able to put together a shopping list [as often as you'd like] I could pick up whatever was necessary and drop it off at your clinic. It really wouldn't put me out at all, and I've been feeling a little guilty about not being more of a help to Steve's recovery.

    Please think about it and let me know.

    Nice blog, by the way.

    George "Type A" Mead