A is for Advocate

25 May

We had some excitement the last couple days.  Keith had been told to go to Urgent Care whenever it was convenient, so he could have a back x-ray.  He’s been having terrible pain in his back for many months now, but hasn’t been able to see his primary care doctor (it’s actually more that his primary care doctor had left and hadn’t been replaced yet, but that’s another story).  He’d had appointments with doctors on tele-health, but it’s hardly the same thing.

I think he finally has a doctor now (I’m knocking on wood as I type), and she seems to be a little more proactive about getting to the bottom of what’s going on with his back., including leaving orders for this x-ray.   So, on Saturday, I took him in.  Naturally, I couldn’t go back with him (thank you Covid), but I didn’t think it would be a big deal.  It was just an x-ray.  Keith was going to ride his bicycle home, but I waited a while in the lobby just in case.  It was a good half hour before the nurse came out to let me know what was going on.  He had seen a doctor, who gave him an IV and some anti-inflammatory medication.  I was surprised but thought, well, ok . . . weird, but no biggie.  It was going to be another hour before the IV was done, and I had flowers waiting at home to plant, so I left.

When Keith got home, he said something about a prescription the doctor gave him.  Oh?  What did he give you?  Prednisone and Vicodin (aka hydrocodone).   While all the red flags in my head started waving and alarm bells went off all over, I mustered the calm to ask how much Vicodin he gave him and how he’s supposed to take it.  He wasn’t able to give a clear answer – something about 6 days worth, half a pill a day,  the doctor told him 3 pills, but there were 6 in the bottle . . . it was clear he didn’t remember/understand what the doctor told him.  Meanwhile, my brain is screaming – Did the doctor even look at his chart??  Who thinks it’s a good idea to give a dementia patient who has a history of alcoholism, who has it in his chart that he gets 2 beers a night – Vicodin!?!?!?

I looked over the discharge papers and the meds they gave him – it was 6 pills, and the bottle said to take one every 12 hrs.  I asked if the doctor mentioned anything about not drinking alcohol with this medication and he said no.  I told him that if he takes it, he can’t have his beer.  No problem – he’s not going to start the Vicodin till the next day when he has to work.  So . . . then, you’re not going to drink beer tomorrow?  No … maybe – can’t I just take the pill in the morning and not take the one at night?

. . .. . Can you see where this is going?  Only in FTD Land do I get to be both the Policeman AND the Bad Guy.

I called the doctor.    I told him about my concerns and that he put me in a very difficult position.  To his credit, he owned up to the fact that he missed the dementia diagnosis on his chart and suggested that I hang onto the pills.  He had been reluctant to give them in the first place and only wanted Keith to take them when the pain was unbearable.   I asked if he realized that Keith was going to get angry with me if I try to take the pills.  He started to suggest several other approaches I could take but I stopped him.  How about this, I said – you can tell him.  I handed Keith the phone telling him that the doctor had called back and, having had a chance to look at his chart better, wanted to clarify a few things about his meds. (Remember the 4 D’s and Loving Deception?  Pretty good, huh?)

Keith was agreeable and polite with the doctor, but was NOT happy about me taking the pills.  I have them, but that doesn’t mean it has gone well.  There has been a lot of very hard feelings about being treated like a baby, I don’t trust him, I get off on emotionally abusing him, etc., etc., etc. . . ..

Ok, so, why am I telling you this?  I want to impress on you how important it is to advocate for your loved one.  It is an absolute must and you can’t allow yourself to be bullied or intimidated out of your responsibility.   I let my guard down.  I made assumptions.  I let my desire to go home and enjoy the rest of my Saturday afternoon take precedence over my duty to Keith.  And I paid for it.  Do not get me wrong – I am not beating myself up or running myself down, but I’m owning my mistake and I am using it to strengthen me for the next time.  I will not leave him alone at the hospital or doctor again.  Not ever.  I don’t care what disease or pandemic or other issue may be happening – he and I are a package deal and if they don’t want me there, they will have to bodily carry me out.  And I’ll be on the phone with 911 and reporting them while they do it.

If you think I sound like I’m being over dramatic, consider the “could have’s” here.

  • He could have not told me that he got that prescription.
  • He could have taken the Vicodin/hydrocodone and then drank beer.
  • He could have taken the Vicodin and then snuck upstairs while we were outside or not paying attention and got into harder alcohol that our daughter hides in her closet (which she needs to hide because he has been known to go looking for it).
  • He could have taken a half pill, decided it wasn’t working (or not working fast enough) and taken more – lots more.  I know this because he has done this before with other medications.
  • Bottom line – he could have died.

Hydrocodone and alcohol is a dangerous mix.  He could have very easily overdosed and I would have had no idea what happened.

So, the take home today, folks – advocate.  When your loved one – regardless of their condition – can no longer process doctors’ instructions, does not have the ability to reason and use logic, doesn’t understand the consequences of their actions – you can’t assume that the doctor has read their chart or understands their condition.    You have to be their voice.  They may not like it.  They may get mad.  But the reality is, you are all they have.  Their ability to make decisions and know what is best for themselves has been compromised and they need us to do it for them to the best of our ability. **

This, folks, this is dementia.

**PS.  I feel compelled to add – do not put yourself in danger.  If your loved one is explosively angry or you risk some sort of physical harm – don’t get in the middle.  Make sure you are safe and then, if you are able, do what you can.  If you can’t call the doctor in front of him, call from your car or a friend’s house, or hand carry or mail a note.  If you are at the hospital or clinic with him, say you need to step out to use the bathroom and speak to the doctor or nurse in the hallway.  Finally, if you are in danger with a suddenly out of control Loved One, DO NOT hesitate to call 911.  Explain that he is a dementia patient and is in a rage.  They are trained to handle these kinds of situations and they can help.

1 Comment

Posted by on May 25, 2020 in Uncategorized


One response to “A is for Advocate

  1. Brenda Clifton

    May 25, 2020 at 2:37 pm

    Oh Jen, I am so sorry you and Keith deal with this. We are actually in the same situation with our son Alex. He presents normal but has all kinds of issues and we look like controlling parents. We have to clean up all kind of crap no one understands.


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