Squeaky wheel

60 falcon

I mentioned in other posts or comments that my wife's PCP and I have been trying for months to have my wife seen by a psychiatrist to better manage her meds.  This healthcare system was repeatedly screwing up or denying the referrals that the PCP submitted.  The PCP was as frustrated as I was and she filled internal complaints that made it all the way to the CEO.  I filed a formal grievance for a violation of her patient rights... Access to appropriate care.

I'm not certain that the grievance and PCP's efforts are the reason, but my wife had an appointment for the following day.  It was with a neurologist who specializes in Alzheimer's. I'll consider that a win even though it's not a psychiatrist.  The appt was kind of weird in that the doc herself is in New York and we saw her on video while we were with the neurologist's PA in person. 

Finally she has her foot in the door and a plan in place to try to get delusions, hallucinations, and agitation under control.  We're weening her off some of her current meds and will begin Seroquel in a few days.  I'm expecting some tough times until the right dosing and the right medicine is figured out. But I'm relieved and hopeful.

The doc also referred my wife for palliative care.  The initial appt for that is next week. I'm not sure how that'll help us but I'll take anything I can get. We also got a referral to a social worker to help us see if there are other resources available that I might not know about.

I'm not accustomed to being a squeaky wheel and I was uncomfortable filing a grievance, but it might have paid off for my wife.

M1

Good for you 60F. It's so sad that it takes so much energy to make the right things happen. When we're all exhausted already. Here's hoping she really benefits....

sandwichone123

Palliative care focuses on symptom relief, and if they can do that it will be a real blessing to you and your wife.

Gig Harbor

Good for you for persevering and getting her the care she needs. My husband has been having delusions periodically and his PCP suggested trying Seroquel. I gave him 25mg and in 45 minutes he could not talk and could barely move. I quickly called a nurse friend and she looked up how quickly Seroquel worked and it was 45 minutes. I guided my husband to the bed and had him lie down. He slept for two hours and when he woke up he was back to his normal baseline. I haven’t given him another dose as his delusions have stopped for the time being. Seroquel is usually started at bedtime and I think it might be because of reactions like his when it is first started. I just wanted to mention his reaction to the drug but I will try it again if the delusions start back up.

toolbeltexpert

Falcon60 that's good news but I hate you had to fight. I learn from others how to work the system if I have you. Thanks for your example.

Ed1937

With a number of posts like this lately, it seems we need to start a "fight force". Sorry you had to go through that.

Joydean

Good for you and your wife. I is such a shame that we have to fight to get help for our love ones. I hope you truly get results. 

M1

FWIW, I got a letter from the state health department that they did an unannounced inspection on the hospital where my partner was, and found them in violation of a number of regulations--and laws.  Unspecified actions will follow.  No surprise there.  Medicare also was prompt about following up; the nurse reviewer was very supportive but said it could take up to three years for resolution (because they'll drag their feet on turning over records).  That's okay though, just having them have to hassle with Medicare for three years is worth it if it can prevent those disasters from happening to someone else.

You're absolutely right Ed, we need a fight force.  Who has the energy though?  This is exhausting enough.

Ed1937

M1, that's a win!! I know they would rather be left alone, rather than have someone forcing them to do things the right way. Great job!!!!

Joydean

Great job M1! I’m sorry you and your wife had to go through all that you did, but maybe, just maybe it will save someone else.

June45

Thumps up!!  Keep us posted on how it goes with the Rx adjustments.