To be clear, my earlier comment was not a request for @ThelmaLou to quit bugging us about this unfolding tragedy. Rather the opposite. We are all here for each other, at least as much as invisible (but not imaginary ) internet people can be.
FWIW I also advise @ThelmaLou to reach out to sister Fanny. Perhaps sound her out first on what she thinks is up w MaryLou before dropping your latest news-bombs on her. She may be well aware, but stymied on how to help from 1000 miles away.
In my condo prez role I’ve watched several descents into Alzheimer’s, a couple into plain old senile dementia, and one Parkinson’s case that AFAIK never involved hallucinations. Long ago my grandfather had a stroke that spared his body & motor control, but fried the thinking part of his brain. Instant dementia.
Based on those experiences my decidedly not-a-professional WAG is that MaryLou is already not safe physically or financially to be living unsupervised. The clock on disaster is already ticking.
Mary Lou has told me that she informed sister Fanny of the hallucinations, but I’m guessing she might have downplayed them. I will call her at some point, waiting for my intuition to tell me the soonest best time.
The thing is, about two weeks ago, one of the younger brothers (65-ish) in the family had a stroke. (There are six siblings, Mary Lou being the oldest.) He’s single, in the hospital here in SA. He was unresponsive for a week, then began talking a little. So there’s already this family crisis in the works. He is being tended to by the youngest sibling, a woman of 60-ish. She is totally capable, a thoroughly competent Rock of Gibraltar. It’s not clear yet if the stroke brother is going to get any better. If he does he’ll need beaucoups of rehab, which youngest sis will oversee with enormous common sense. Down the road, she would ultimately be the most capable of caring for Mary Lou if It Comes to That. But it would need to be here in San Antonio.
thank you. … she was a horrible parent, abusive and neglectful and nasty - but OMG everyone just adored her! So Fun! So lively! Always up for a good time!. … And there I was, raised by my grandmother half the time, left to take care of her dirty old azzz. I could tell you a thousand other horrors. It ain’t easy.
That really seems the urgent question to get addressed, more than the diagnosis.
Yes accurate diagnosis will matter as it informs about likely speed of progression, what to expect … but her family immediately getting involved to assess whether or not she is safe and what needs to be in place to keep her safe is much more urgent than that.
It also matters very much because of the off chance that instead of one of the all too common untreatable dementias, she might instead have something treatable.
Or a simple case of over-, or mis-, medication. We’ve seen that here before. Unlikely in MaryLou’s specific case given the backstory we know so far, but not impossible.
The good news is that while a medical diagnosis might be the work of months and much hair-pulling and insurance-fighting, a determination by the family that she’s unsafe to be left at home alone can be settled quickly if the family is clear-eyed and open minded.
But my point still stands pretty much whatever there may be as a possibility that I am ignorant of.
Today I happen to be spending some time doing my continuing medical education. It is in the form of a variety of multiple choice questions. (With discussions of the answers after you make your choice.) The situation here is of the form similar to a few of them. Child presents pretty sick and with enough information to be pretty sure they have a particular something, a posterior brain tumor with increased intracranial pressure maybe. Something bad that you are pleased that you’ve recognized. What is most important to do next? The temptation is to pick the answer that results in the diagnosis, or treats say the increased intracranial pressure that you have figured out must be there. Wrong. Stabilize the patient. Be it the give the oxygen, place an airway, fluids … The diagnosis, even the urgent issue of the increased intracranial pressure, relatively can wait. The oxygen/airway/so on … is of the immediate concern.
I’d like to say how sorry I am for everyone that has had to deal with this. It is awful in so many ways.
ThelmaLou, I wouldn’t wait to call the sister. Just do it. I wouldn’t be surprised if she has no idea how things are. Some people do not like to admit to increasing infirmity, and your friend telling you that she has told her sister about her hallucinations is not a sure thing. Or that the sister grasps the seriousness of the situation.
Lastly, you CAN be an advocate for your friend. You can speak to her doctor, or more likely a nurse in his office. Just call and say you would like to speak to someone involved in your friends care. Ask for someone to call you when they have time. When they call, start by saying that you understand that they can’t give you any information and that you are her friend and you would like to tell them what you know. Be succinct and to the point regarding what is going on right now. Your friend may or may not tell her doctor what is going on. Frequently people are very vague when talking to their doctor.
Good luck
Older people sometimes have really weird reactions to urinary infections. Or, as @LSLGuy says, to medications. Or encephalitis, or a brain tumor – those are sometimes treatable.
That’s pretty much what happened to my mom two years ago. She was suddenly hallucinating, talking nonsense, etc. My sister got her into the ER: badly infected gall bladder. After surgery, her cognition went back to normal.
I had a long chat with Mary Lou’s sister Fanny. I think both of us are much relieved. Fanny didn’t know that ML was having hallucinations in the daytime. Mary Lou had told her they were only happening when ML first woke up in the morning, AND that often, the figure she sees is Fanny–and this is almost every morning! ML never told me that. When I told Fanny about the daytime visions of people in the back yard who weren’t there and especially about the people who were sitting in the car (who weren’t there), she was surprised. And a little alarmed. I also mentioned the possibility of a UTI to Fanny and texted Mary Lou about that this morning and said to be sure to bring that up to the doctor.
Fanny agreed that ML definitely needs to go to her doctor and take their brother with her (bro lives in town with ML; Fanny lives in NYC). And Fanny said she would call brother today and fill him in. Brother is a very nice guy but also very easygoing, laid back, and not initially proactive. However, he is a widower, and he did see his wife through her last illness, so he can step up when needed.
There’s also a sister-in-law who could be pulled into this web. She also lives elsewhere pretty far. She’s very sharp and this SIL is the kind of person who can definitely take charge. Mary Lou and SIL are very close.
I feel much better that the family knows more. There really is no shortage of younger family members who could be called into service–it’s just that they’re currently scattered all over. Fanny did say, if Mary Lou needs me, I will be there, even if I have to move back to Texas (she’s been in NYC at least 40 years). It may eventually come to that.
Fanny said she and Mary Lou had been planning for her to come to Texas to visit in July but ML keeps putting her off because “the house is a mess.” This is very typical-- always has been. Fanny said she’s just going to tell her that she’s coming the first of August and will stay in a nice hotel/motel with a pool. Maybe by then ML will have a referral to a specialist. (In my dreams, eh?) Mary Lou is retired, only drives to the grocery store and a few other familiar routes. She is otherwise able-bodied and capable of taking care of herself. For now. A year from now? Who knows/
In other news, Fanny’s long time boyfriend-now-platonic-friend has been diagnosed with some type of hydrocephalus and is having surgery next week. Meanwhile, there’s their youngest brother who had the stroke and may or may not be getting better and will need Medicaid for long-term care-- if it’s still available. It’s always something, to quote Rosanne Rosannadanna.
My sister also saw a family member “living in a bush in the yard.”
My sister never let anyone in her house. Never admitted it was a mess, but we found out after she was hospitalized. Mess was an understatement. (I have a whole story about not letting anyone in, but this is your time…I’ll save it for another time)
I am so happy that you called Fanny. As I suspected, Fanny was not aware of the gravity of the situation. Now it’s out there and her family can band together and be sure that MaryLou is taken care of.
Didn’t Billy Joel have surgery for hydrocephalus recently? This poor family, it seems like they are getting hit with everything all at once. Thankfully there seems to be several family members that can support each other.
Please keep the updates coming…
PS does ML have a Managed Care Medicare Plan? or Traditional? It will make a large difference in specialist that she is able to see.
I’ll third this, it happened to my mom. Unfortunately her infection spread and she ended up dying from sepsis among other things so we never got to find out if she would have gotten back to normal after the infection was treated.
ThelmaLou I’m sorry you’re having to go through this. Please keep us posted.
Please don’t hesitate to include your own supplemental anecdotes. I’m very interested, as I’m sure others are, too.
That is really interesting!
Yes, in fact Fanny said it’s that same thing that Billy Joel had. There is a woman here at The Home who had this also, and she had surgery a few years ago and now she is absolutely fine. She is well into her '80s.
The reason I mentioned her insurance, is again, a sister experience.
She had a Medicare Advantage Plan as opposed to Traditional Medicare.
After her hospitalization, she was referred to rehab facility for Physical Therapy. The only rehab facility that accepted her insurance was 60 miles away in the wrong direction. We never thought of that until it happened. (why would anyone?) We decided that the easiest thing to do, was to pay out of pocket, and get reimbursed when her house was sold. The whole process from hospital admission to hospice to funeral was 4 months. A very long 4 months.
Had we been aware (or even thought about it) we might have changed insurances during open enrollment.
Yes, Medicare Advantage is a crock. Unfortunately, people have to find that out the hard way. One of my neighbors here at The Home says, “Medicare Advantage takes advantage.” I don’t know what kind ML has.
Did you ever get reimbursed?
I’m hoping things are underway today. The sister Fanny is very much on the ball, if far away.
Thanks for your comments. Always glad to hear from you. Anything you feel move to share (or not), please do. When it’s my thread, I’m open to wandering from the main topic.
) internet people can be.
This is very typical-- always has been. Fanny said she’s just going to tell her that she’s coming the first of August and will stay in a nice hotel/motel with a pool. Maybe by then ML will have a referral to a specialist. (In my dreams, eh?) Mary Lou is retired, only drives to the grocery store and a few other familiar routes. She is otherwise able-bodied and capable of taking care of herself. For now. A year from now? Who knows/