My 85yo mother’s dementia has progressed significantly but she can still make enough sense to fool you as long as you don’t talk long. After that she repeats the same questions asks off the wall questions forgets 2 minutes ago all the way to 30 plus years ago. She cries and begs to go to the dr and when we get there she smiles and says she’s fine. When they leave the room she will ask me where are we and why are we here? She has pulled some of her hair out and has developed a constant “tick” of picking and rubbing her face and head. I feel like the doctor thinks I’m exaggerating but it is so much worse than they know. What should I do?
I had to do that all the time with my husband, as like your mom, when his Dr would ask him how he was doing, he would always respond, fine. But thankfully his Dr knew otherwise, as I had sent him via the patient portal, what really was going on.
There are also places that will test a person for any signs of mental decline. You might want to look into that. Her Dr. should be able to recommend such a place, as they're usually affiliated with your local hospitals.(at least they are here where I live) Good luck.
This is what my list was like:
1. Shows signs of sundowning
2. Shows signs of showtiming
3. repeats the same thing over and over.
Give ur list to the receptionist and ask her to give them to the doctor. This gives the Dr. a basis for his questions to her.
UTIs and other infections can alter behavior, demeanor or even make it seem like dementia has suddenly gone MACH II. Bloodwork can show evidence of non-UTI infection, then it's their job to figure out where the infection is.
After Covid leaves you can make ER visits until you get the testing done. Until then, not wise to do.
The neurologist or the Neuropsychologist will work with the PCP, the Neuropsychologist will work with a Neurologist and a PCP. They are much more equipped to assess the stages of dementia.
As far as "showing" the PCP decline if you keep notes or better if you can provide a vide of a conversation with your mom that "goes off the rails" that might help.
I've found that a quick, succint question to one of my drs will often result in a much quicker response than making an appointment (sometimes WEEKS out) and if it something he needs to 'see' he has me make a FU appt.
You can do a bullet point listing of mom's changes. This is kind of how they diagnose anyway--looking at all the 'top issues'.
And YES! It is important to see the right doc! My hubby is a liver transplant patient and his PCP does not like to deal with ANY drama that crops up with that.
(FWIW, many people complain , moan and groan and when finally in the drs office, they say 'oh I'm fine'. Teeth grindingly frustarting for the poor person who took them there.
My LO also could perform “social discourse” adequately, but after her testing the psychiatrist indicated that she was overwhelmed by anxiety that someone could “find out” that her memory had badly failed. Her actual language functioning was far more impaired than had been readily apparent.
If you’re not satisfied with the first try, a second opinion is always an option.
Don't you just love that? My mother pulled that a few times. She was already in MC when the leg/knee pain, complaints, wailing, etc... I'm certain it was because she never had her knees "done", despite saying for years she should do it (SHE said it!) One staff member was up my butt about it.** Really? What is any doc going to do about this? She was maybe 95 at that time, with dementia. Not about to put her through surgery! I DID make effort to have ortho check (PCP at the time prescribed SO much tylenol and ibuprofen, it was scary!) I DID get her to the ER first, where she promptly said she was "fine." By the time we got into a bed, pending some tests, I listened to her moan and complain for FOUR hours! They found nothing (but didn't repeat xray, as they'd done one maybe 6-7 months before - yeah, fine, but things CAN change!)
After I made appt with ortho, but it so far out, I begged them to get us in sooner, which moved it up a bit. She was "beyond" the whole pain thing by then, but I had him do the injection, just in case (he did xrays, and said if she were 20 yrs younger, we'd be talking surgery!)
(** this staff member was asking me if I liked seeing my mother in such pain. No tootsie, but if the ER finds nothing, what do you expect me to do?? She suggested Urgent Care. Pshaw. They don't have her records, mom can't explain anything, and could deny pain. WHAT would they be doing? Nothing. Nothing like adding a guilt trip, eh?)
If PCP doesn't do regular cognitive tests, or brushes off your concerns, clearly this is the wrong person to work with. Many PCPs don't have enough experience with dementia and CAN be fooled, since they spend so little time with the patient. It might be best to highlight your concerns, list all the signs you see, either through a letter or if they have it, a portal, before mom's appt. Then, leave mom in the room with the doc and/or techs. With you there, she may be more "propped up." The first doc visit we had for this, she started on me, so I left the room. The doc was outside the room and talked to me first. He agreed to do up the letter I needed to become rep for the federal pension, but sadly trying to work with his office, despite documents for what was needed, regular calls, letters, portal notes, nine months later I had nothing!
It might help to schedule an appointment to talk to the doctor by yourself so you can explain things. Geriatric medicine doctors and neurologists are better equipped to help you figure out what to do. Good luck. This ain’t easy.
In front of her, I let MD know short, specific instances- like what you related. Tell him/ her how fast the advance is, any weight gain or loss, and the new ‘ tick’. It could be a med side effect.
If you don't already have durable power of attorney, make an appointment with an elder law attorney. Attorneys are used to determining whether or not their client is capable of understanding the papers being signed.
Later, when we sent him court paperwork for guardianship and placement in assisted living, he had all the information he needed for an informed response.
In response to a request for a letter needed to be rep for mom's pension (federal, so POAs are NFG), they set up an appt. I had MAILED all the paperwork, form needed, information required, definitions, etc as part of the request. The doc agreed to do the letter, but the office never complied. They asked for documents - I said I sent them, but also attached them in the portal. They asked for POA, which I also sent to them, but attached it in the portal. Nine months, multiple calls and portal pleas EACH month and they never sent anything. Because the MC chosen was too far from their office (closer to where I live, to manage things easier and be able to visit more often), we changed docs and I got the needed letter very quickly.
If PCPs don't comply or brush it off, get appt with a specialist or change PCPs. We had to change again (it was in the works already, but doc decided to retire with almost NO notice!) New doc tried to have the cognitive test done - not sure why, since mom was into year 2 at MC by then. Between almost no hearing (plus hearing aids had just gone through the laundry) and dementia, she couldn't take that test. A few months later at my exam, they gave me the test.
So, better PCPs are now doing the mini-exam for older patients, to have a baseline. When they see changes, they can be more aware and ensure nothing else is going on.
HDA I am in the same boat as you!
This is what I did for my mother....I live 650 miles away from my parents and when talking with them, I had noticed that something was off with my mother. My father told me he wanted me to take my mother to her doctor because she has her doctor totally fooled. I made an appointment a couple months off so I could go for a visit but in the meantime like response below from "katepaints" I too sent a letter, along with a list of things that my mother had or was doing or saying, and a copy of POA (my brother & I are both listed on POA). The doctor asked her all kinds of questions but when she asked my mother how do you think your memory is of course my mother said fine and I spoke up and said "mom I don't think your memory is as good as it once was." I could tell she was agitated that I said that and I said why don't you let the doctor just checked you out remember how you mentioned that your sister memory was way off like she couldn't remember her address and we just want to make sure you are ok so if something ever does happen the doctor knows what to do". My mother agreed, so her doctor referred her to a neurologist, which did a number of tests plus an MRI. After a couple week the neurologist said that she has Alzheimer's. My brother knew what this meant right away, my dad really didn't know but knew it was bad and my mother just sat there unresponsive; it didn't register with her. At least we had a diagnosis and we knew what we were dealing with and not to question or get upset with mom when she does certain things or says certain things. Unfortunately, 6 months after this diagnosis my father passed away so my mothers care fell onto my brothers shoulders since I lived so far away. My brother stayed every weekend with my mother and during the week (unless I came up to give everyone a break for a couple of weeks) we managed to find a couple of people to help in her care that we paid and we did this for 2 more years, until my mothers care advanced to the point that she needed more care than we could provide and we moved her to a memory care center and she passed 2 years later.
I agree with other posters that a letter to the doctor or even a video could help here, but it depends on how well the video actually reflects the behavior (a doctor is not going to watch a lot of footage) and/or how well the note expresses the true need in a concise but clear way.
I know exactly what you're saying about your Mom. My mother can pull the wool over anyone's eyes when it comes to a short conversation. She is 98, witty and engaging. But when that conversation ends, she doesn't remember a word of what was said or who she spoke to. She doesnt remember when she ate, what she ate, or even IF she ate. She has no idea what her meds are and will take them twice if left out. She leaves the water running. If she goes anywhere, Doctor, hospital, or family party - its gone from her mind a few hours later.
The list grows.
It sounds like your Mom shouldn't be left alone anymore and you need help at home for her. You can private pay someone local for a few hours to give yourself a break. You can install cameras so you can monitor her from your cell phone. If you are planning to apply for Medicaid so that you can get her a home aide, it's a lengthy process - especially if she has assets. So contact an elder law attorney to be sure you are doing it "right". It's the best thing I did for me and Mom - but Medicaid laws are changing rapidly - so don't delay.
Now the long story.
For most of the 36 + years that my wife and I have been married, I have gone to as many of her Dr's apts that I could. For the past 20 years, I have been to all of them.
The doctors all know me well and when I tell them something is different they listen 100%. If fact a few of her drs have said I am more of a colleague to them instead of a complaining spouse.
Before she came home in August after her last PT rehab stay (6weeks during covid, so I could not visit her any during her stay) I had noticed her phone calls had decreased from 10 to 15 times to maybe 1 or 2. When she did call, all she could do was cry.
When she got home, I noticed a large decline in her cognitive functions. I call her PCP's office, left a message for him and within a few hours he called me back saying he had started referral process for a neurologist and had call for her an appointment because he was sure the referral would be approved before the appt, date.
The neuro started the testing, which was causing my wife a great deal to duress. Her anxiety level was through the roof , her answers were no where near being correct and after about 60% of the way through she stated I have enough info for a diagnosis. I can't continue to cause this much anxiety for her. Advanced Vascular Dementia.
Since I dover separate from her medical transport so one of her aides could go with her, we did not talk for about an hour, After she was home and settled back in bed, she asked "What did we go to that dr, for." The next day she asked " When is my drs' appointment this week. Completely wiped her visit from her mind.
To make a long story short, The relationships I have with her Drs make all the difference in the world. I have become knowledgeable in all he illnesses, diseases, and diagnoses, The doctors respect my knowledge, research, questions I ask them, and overall awareness of my wife's condition. ( I have had no medical training. My occupation was retail management (problem solving) I became disabled in 1996 about 15 years before my wife was no longer able to work. I am not supposed to lift over 10 lbs, no bending, reaching stretching etc. to help avoid pain increase. I am the primary caretaker for my wife as I am the only one with her for about 16 to 18 hours of the day. How can you stay within the above restrictions while changing diapers, transferring back and forth from bed to wheelchair even with a Hoyer lift.
Again, the relationship you have, or build, with all doctors and the knowledge of your LO conditions are two of the most important ingredients in getting proper care for the individual in your charge.
The 36 Hour Day very informative and helpful. If you do not yet have power of attorney for finance, health care etc. get it. See an attorney who specializes in elder law, too many mine fields to cover here. Best wishes to you and your Mom, they call it the long goodbye for a reason.
I lost my Mom at least 3 years ago, but she is still alive in a memory care near me at age 95. They do EVERYTHING for her, she has no idea who she is, where she is, lives in this moment only. Can not remember what happened 5 minutes ago ( sitting at the table " Mom was lunch good? Has no idea she just ate.) Has no plans for later. She has wonderful caregivers, is not in pain and just tested positive for Covid. I have not physically been with her since March. It breaks my heart everyday. Been on hospice for 20 months, we pray every night she does not wake up. Good luck.
DL
My mother's doctor when she was still at home would spend all the time in the world with my mom, but she would only talk to her. That wasn't too helpful, since my mom had dementia and thought she was fine and dandy. I started writing to her a week before the appointments, and even though the doctor refused to learn how to use a computer to make her responses easier, she did manually write her responses and have her staff scan the paper to send back to me.
Working with a doctor really is a partnership. They don't have magical powers to know and understand what's going on in the span of a 10 minute appointment when they have to write everything down in addition to dealing with the patient. Do the doctor and your mother a favor by taking your own copious notes and sending them in before the appointment, so they can be up to speed with your concerns.