Saying no to medical clutter – unnecessary procedures, supplements & meds

Mom and I have been letting go and saying no a lot lately.

First, she started refusing her supplements and vitamins.  Somewhere in her brain she still knows what the important pills are.  She’ll never decline her thyroid med if someone reminds her what it’s for.  So we’ve ditched the multivitamin and the vitamin E.  Anyone who’s been reading this blog knows my mother is ready and willing to die as soon as she possibly can, and though I do still enjoy her in my life, I’m ready and prepared to let that happen without doing anything to delay it.

Believe it or not, some doctors still push mammograms and colonoscopies for even terminally ill patients, but that was easy to let go of.  No way Mom would want to deal with chemo or radiation or extend her life at this point.   All cancer detection tests, gone.  

One doctor got righteous on me about this, saying if it was his mother and she was still only 74, he would never neglect to check for…. (blah, blah, blah….)  Of course, his mother doesn’t have dementia or a terminal disease, so it was interesting that he felt compelled to give a speech that I mentally pushed the mute button on.  Thankfully, he was an acute care doctor we never need to see again.  We’re saying no to all preventative tests and care now, except dental work, because neglecting that could cause unnecessary pain.

I’ve also have refused any brain scans or MRIs to see what’s happening up there.  Some doctors feel it’s important to make a correct diagnosis of Lewy Body Dementia or Alzheimer’s or whatever else could be befuddling mom’s thoughts.  Not me, not now.  When I ask them how it would change her treatment, they all say she’d basically do exactly what she’s doing now.    Hmm……

Mom has this new behavior where some days she won’t and mostly can’t open her eyes.  When I missed the call from her residence’s nurse, she was taken to the doctor and came home with a diagnosis and prescription (antibiotics) for conjunctivitis (pinkeye).  As someone who used to work in early childhood and got pinkeye from the kids all the time, I know conjunctivitis was much more often viral than bacterial.  Antibiotics are usually a waste of time and money and although they appease anxious parents who think they work faster, they also help create more resistant bacteria for our whole human society. 

Interestingly, Mom had none of the normal symptoms of pinkeye.  Her inability to open her eyes seemed more related to her movement disorder (parkinson’s/lewy body issues).  When I called the clinic about my suspicion, I found they hadn’t taken a culture to pinpoint any bacteria.  They just assumed.  So I asked the nurse to hold the antibiotic and just use warm water compresses.  Mom was fine the next day.

And finally on my list of recent unnecessary medical procedure rants, my husband and I took a risk and headed north this weekend to go to his family’s cabin for Labor Day weekend.  Late Sunday I checked my cell phone and there were 8 messages, which I knew meant trouble with Mom.  Turned out she’d fallen and was in the ER.  We headed home just before 11 that night and got back to her memory care at 2AM, just as the ambulance pulled in to return her.  After doing so, we realized we probably could have finished our rare vacation and she would have been fine.  She was comforted by our presence, but not so much that a familiar caregiver couldn’t have done almost the same.

When I read the notes from the ER staff, I was proud of my mother and shocked at the unprofessional responses about her resistance to treatment.  She had fought them hard over an IV procedure.  “Why the hell do I need that thing?”  They quoted her exactly, on the staff notes / discharge report. 

Well, I had the same question, and called them up the next day.   Why had they fought my mother over something that wasn’t medically necessary (she wasn’t dehydrated and didn’t need anything injected)?  Why had they documented that she was a “most unpleasant patient,” and labeled her as “mentally and physically taxing to staff” when she pinched them and pushed them away, swearing like a sailor as they’d tried to force the IV in against her will?  Why not consider her viewpoint and respect her boundaries, especially when they were fully aware of her “Do Not Resuscitate” orders requesting no unnecessary medical intervention?

The main reason I feel like I can’t get away these days isn’t so much because of what I need to DO for Mom, but for what I need to prevent people from doing that creates unnecessary stress and expense for her.  It can get exhausting.  This is why I so look forward to the time when she’ll qualify for hospice.  Their staff will fight these battles for me. 

Until then, the nurse at Mom’s memory care understands and respects my and her point of view, but is bound by company policy to get Mom to an acute care facility whenever something arises that’s out of the ordinary.  I understand their perspective, and I wouldn’t want them to ignore issues that arise, but since Mom has been at the doctor almost every week this summer for endless little issues as she declines, I’m yearning and ready for even more letting go.

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This entry was posted in advocacy, caregiver stress, support, and respite, dementia, doctors and medical, holistic health, legal issues, lewy body dementia, memory care and residential options and tagged . Bookmark the permalink.

6 Responses to Saying no to medical clutter – unnecessary procedures, supplements & meds

  1. momsbrain says:

    I, too, was surprised by the medical staff at the ER when my mom fell, and how they expected a dementia patient to be able to answer questions, understand the blood pressure measurement might hurt, things like that. I was glad I was there, but that isn’t necessarily the norm. And I am about to go out of town four different times in the next two months – yikes.

    I hate it that your vacation was interrupted. I love it that you called to challenge their documentation of her hospitalization. But the forced IV – totally inappropriate. It’s interesting that in this day and age, a patient still feels so powerless.

    I stopped Mom’s mammograms at the first hint of Alzheimer’s and still regret putting her through a colonoscopy before I realized what was going on with her. And that doctor who would force testing on his parents: I pity those parents. What a crock. Your advocacy is impressive. I know it is also very difficult.

  2. Laura says:

    You are so wise …
    Hope it is a peaceful week …
    Laura

  3. Barbara says:

    I just found this blog thru a facebook link. I am a nurses aid in a skilled nursing facility, and I totally agree with what I am reading here. I will follow with interest & support.

    • Megan says:

      Thanks Barbara! That was so kind of Susan to pass on the link. (I’m assuming you may have seen Susan Marynowski’s post) I’m often wary of putting personal things on FB, but I’m glad it brought you here and would be interested in hearing more about what region you’re in, your perspective, and how you negotiate some of these issues with your clients.

      Megan

  4. Melissa Cook says:

    I have mild cogntive impairment and am 60. Iinherited early onset from my dad. I was his executor and because I was I was ignorant, I and watched/administered agonizing care for him for 12 years. My brother had it, but luckily died at 67 from stroke complications, but was subjected by his daughter (executor) to horrible and unnecessary medical procedures, including prolonging his life by hand feeding. I have been ranting and raving about NOT “going into one of those little rooms” for years. Fortunately I have the best of the best executors and a supportive husband. I recommend googling Caring Advocates website, for those of you who are searching for a legal, ethical, humane way for your loved one to die (self starvation). I’m signing myself up via the legal process recommended by Caring Advocates and will make a CD of my wishes with my attorney, executor and husband present. Will have plenty of copies on hand for anyone who dares to block my wishes.

    Melissa

    • Megan says:

      Thanks so much for speaking up, Melissa. I’m glad you have such solid support and have found a way to get your wishes put solidly in place. I will check out Caring Advocates.

      Hospice, I’m learning, can also be helpful. My mom just qualified and they help back me up whenever I decline things like flu shots, etc. for my mom at her residence.

      Glad to hear from you,
      Megan

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