Should I be proud of that?
For the last month and a half we've been messing with Mom's medications. Dr. Susan, Mom's geriatric psych doctor, recommended cutting out her daily dose of Zoloft as the Seroquel may be duplicating benefits. With pill taking getting more and more challenging for Mom we readily agreed, hoping to make her life easier by paring down the meds.
Turns out, we were wrong.
We broke up with Zoloft then spent two weeks watching Mom slip into increased anger, higher levels of combativeness, and flat out solar-level flare ups of rage. Dr. Susan and I both came to the same conclusion: "Wow. That was stupid. Zoloft now! Zoloft forever!" (More my words then Dr. Susan's, but we agreed in sentiment.)
So, we went running back to Zoloft with open arms, tears of regret, and promises to never, ever, ever abandon it again.
About the same time we got back together with Zoloft, I came across an FB post from caregivers who had discontinued Namenda for their dementia loved ones and had noted dramatic improvements in cognition and temperament. As I'm familiar with these caregiver's journey from following the page regularly I knew their dementia people were about as progressed in the disease as Mom, prompting me to try for the same results.
I have to insert here that Namenda, or as I like to call it, "That f'ing green pill!" is everyone's least favorite pill to administer to Mom. It's a capsule, so she almost always tries to chew it like a jelly bean then spits it out (if we don't watch her while she's supposedly swallowing it we find those f'ing green casings all over the house). It's time-release, so you can't crush it. It does come in liquid form, but one bottle cost Mom $150.00! And that was before she hit the Medicare "donut hole."
So, without bothering to consult Dr. Susan, and justifying it as sure to be great for Mom (ignoring the fact that getting out of the whole f'ing green pill ordeal every morning might be my primary motivation), I decided to nix Namenda, certain it would result in dementia's equivalent of champagne wishes and caviar dreams!
Turns out, I was wrong.
Losing that f'ing green pill left Mom in dementia shambles. So much so, that when heading back to her home after her weekly shift The Other Girl's parting words to me were "She's more of a mess than ever before... FIX IT!"
So, I did. And the result? Well, I've medicated the fight right out of her.
Now, we're all relieved that Mom is more at ease, smiles more, talks more (although gawd knows what she's babbling on about), has less anxiety, and is content for much of her day. (We've even experienced her straight on walking into the shower! No screaming, crying, cussing!)
But I'm conflicted. I feel like I'm taking the easy way out with drugs. Especially because I am well aware that there are a growing number of studies that conclude non-drug approaches are more effective, and less riskier, than anti-psychotic drugs for the worst of dementia's manifestations.
I appreciated this balanced article from the University of Michigan that simultaneously acknowledges the need for behavioral medication, but clearly states if the health care system incentivized caregiver training - be it family caregivers or professionals - there would be a lot less prescribing of high risk drugs for our dementia people.
What a concept, eh?
Instead of ignoring and leaving 15.7 million dementia family caregivers in the U.S. to fend for ourselves, to put our lives on hold, our financial futures in jeopardy, our own health at risk, how about allotting a portion of the $217.7 BILLION DOLLARS A YEAR we are saving the health care system to educate, provide best-practices training, and support us as we care for our terminally-ill dementia loved ones?
Incentivized education, training, and support would have been so welcomed when we began this journey. Instead we piecemealed an education together through internet searches, and continue our learning by the ineffectual method of smashing ourselves against the treacherous Isle of Dementia, constructing a raft from the wreckage, then ship-wrecking again with all new mistakes.
And now, after 3-years of full-time caregiving, even with all the resources and respite we have been able to access, just the thought of training exhausts me. Dementia has dementia'd the fight right out of me. Which I guess is why I'm reluctantly okay with...
Medicating the fight right out of Mom.
P.S. Statistics provided from the Family Caregiver Alliance web page "Caregiver Statistics: Demographics" Give it a read, if for no other reason than the comfort of knowing we are so not alone in this journey.
P.P.S. I STRONGLY recommend getting a geriatric psych doctor on your dementia loved one's medical team. If their primary care physician has not provided a referral to one of these folks who specialize in medications to help lessen the worst of dementia's manifestations, ask them to do so immediately.
Update: Turns out this post has a sequel... Care Surviving
Kerri, thank you for joining us on this journey. And for your words of empathy, clearly coming from a place of experience.
I finished this post realizing that I didn't quite get the point that was in my head onto the screen. I hope I didn't give the impression that I think the drugs are bad, they are def working for Mom now! I'll have to think it through more and possibly get it right in a post in the future!
We give our loved ones who suffer in pain from other diseases medicines to make them more comfortable and Alzheimer's is no different. Just because they may not be in physical pain doesn't mean they aren't suffering in other ways they are unable to communicate. If the medications make them happy and content, then I'm on board. Until there is a cure, we have no choice but to make our loved ones as comfortable as we can until the inevitable.