Is there a doctor anywhere on this planet who will listen to dementia patient’s families?
My long-time family doc retired a couple of years ago, and that appears to have been the end of having a doctor who would listen to what I’m telling him or her, believe what I’m saying and diagnose and treat based on that. What I’m experiencing is docs who complete the chart and ignore the patient. Worse for me and my dementia-bound mother, they totally ignore the patient’s family.
I have power of attorney, so it’s not a legal issue. They. Just. Won’t. Listen.
Many times, I can’t even get them to look at me. Other times, I can’t get face time or even phone time at all. I’ve been begging docs for help, and I mean begging docs for help with a single problem of Mama’s dementia that is killing me and the whole family and will ultimately force us to put her in a nursing home, and I can not get them to listen to me or believe what I’m telling them. As for as getting actual help, forget that. Mama and I are the invisible people, overshadowed and totally negated by the almighty Chart.
Here’s the problem: Mama will not sleep. She goes down for about 3 hours of zzzzzzs, and then she’s up, rocking and rolling all night long. She roams the house, raids the fridge and tries repeatedly to make jail breaks by leaving the house to go wander the streets. She gets confused and does not know who I am or who she is or where she is.
She gets dressed at midnight, 2 am, 3 am, 4 am, etc, and tries to go to her “job” (Adult Day Care.) She’s taken to stripping off all her clothes and trying to leave the house naked. A couple of weeks ago, she started hallucinating that we were trying to kill her. She also hallucinates that someone has told her things, including that someone is going to kill her, that someone is stealing her things, etc, etc.
What this means is that I have to be up with her all night long. Let me repeat this: I have to be up with her all night long. The exhaustion is eating through me like acid.
And I can not get a doc who will prescribe a sleeping pill for Mama. I mean, I Can. Not. Do. It.
I put her in an in-patient diagnostic center for dementia patients. The doc there was supposed to be the best. Yesterday, the doc called me on the phone (first time I’d heard from her, we’ve never met, exactly zero face time) and jumped on me, asking why I had put Mama in the hospital. You know, why I’m such a mean bad totally unloving daughter.
It seems that Mama has supposedly been sleeping through the night in their lock-up ward.
The doc’s main purpose in the call was to announce that she was sending Mama home in exactly the same condition as I admitted her; no help whatsoever. I felt like asking her to come stay with us for a few nights and see what she thinks. What I did instead, was try to explain what was happening in this first-ever discussion with the almighty doc.
I couldn’t get a word in edgewise. This doc doesn’t listen, big time. In fact, she’s not so big on letting anybody else talk at all. Finally, she relented and said they’d keep Mama a few more days. I hung up, realizing that I may not have a choice. I may be forced by these docs who won’t listen, who fill out the chart, read the test results and never look at or listen to the patient, to put her in a nursing home.
I can not go on staying up 24/7 around the clock, just to keep her from burning the house down and dealing with her night terrors. The irony here is that I know that if I am forced to put her in a nursing home, these same docs will happily prescribe sleeping pills for the nursing home. In fact, they’ll turn her into a zombie at the behest of the nursing home.
The operative medical thinking here seems to be that if a patient or, in the case of dementia, a patient’s family, is stupid enough to go to them for medical care, then they must be total idiots, and, of course, nobody listens to total idiots.
This isn’t my usual kind of post. It is a full-on rant. I’ve spent much of the last 24 hours crying about all this because crying seems to be the only thing left that I can do.
This post is a rant. I can’t call it a way of relieving my feelings because nothing seems to relieve my feelings about this. I am going to pull myself together here in a minute and call the people at the Oklahoma State Medical Association and see if they know of doctors who practice medicine instead of just filling out the chart and gatekeep.
If that doesn’t get me help, I’m going through the phone book, looking for a doc who treats patients.
I don’t need a genius doc. I just need a doc who will stop completing the chart, get their nose out of the test results and listen, then treat.
I begin to despair. Maybe such critters are extinct.