I'm taking my mom to see a geriatric specialist to see if their expertise can help with memory problems. She wants to be proactive about her memory. She sees some of the issues I see about her memory but others, only I see.
Some problematic behaviors are:
- using pens and pencils to clean out her ears
- going to bed really late. She says if she goes to bed early she then wakes up in the middle of the night and cant easily go back to sleep.
- not understanding that her primary care doctor wants her to taper off of Xanax and that she needs to do it slowly and carefully. She takes it before bed. As I explain to her the time to take it, she says she wants to wait until 1-2am so she can sleep deeply for the whole night. Sometimes when we talk about bit, she dismisses everything and thinks it is stupid to even take it at all. A few times, I have found the pill on her bedside table - a missed dose for the evening.
- When home health physical therapy was here, she would repeat herself a lot about pains and previous diagnoses from other doctors.
Wow, writing this out is just he tip of the iceberg and I feel overwhelmed. It's hard to document each thing that seems to be a little off and may be due to memory issues.
The clinic has a memory form that my mom filled out and I am filling out my own version because she can get defensive about what I observe, and I find it best to let it go rather than get into an argument over something that is impossible to reason out with her due to any possible cognitive decline.
I feel a bit stressed, I keep feeling my own sense of pressure to try to capture all of the issues I am seeing so that doctor can get the best picture of her memory. But that alone is overwhelming and difficult to pin point. Her memory is very good in general, but there are days when it is completely off and when her mood is difficult to deal with. She is usually a complete sweetheart, but at times she can pick on me and bully me. Generally, those times involve an ear infection or UTI or cold, etc.
Recently, her primary has put her on Zoloft and that already seems to be helping. Also, she has a referral for sleep apnea, which I very much believe she has based on her snoring and shallow breathing patterns.
Any advice or sharing of experience is very helpful. So far I have not been impressed with the mini mental exam, it has been easy for both of my parents to pass it, and my dad has been unable to pay the bills for three years. Obviously the test does not capture the depth or complexity of dementia. My dad has it and it is undiagnosed AND he's in denial. My mom at least wants to be proactive and protect her memory as best as she can.
Side note on the Xanax...you will hear a lot of negative comments about it being prescribed for the elderly, but mom is 89 and it does help keep to keep her calm. She hallucinates with or without, so for everyone's sanity I don't see the harm. She is on a very low dose and takes it only before bedtime. I do understand concerns about stopping it abruptly, and maybe your PCP has a different replacement he would rather try?
The specialist will take you aside and ask questions about her behavior, address any concerns you may have, and offer suggestions and advice as to how to move forward. Mom was diagnosed with moderate short term memory loss dementia.
Since she had MRI/CTScan's done within the past six months he will study those and perhaps change the diagnosis depending on the findings.
It's a long process and be prepared for a lot of questions ...... they dig deep as they want to get as much information as they can to completely understand your situation, Best of luck....will be looking for a follow up.
My Mom WAS diagnosed with Dementia from the cognitive testing. Her neurologist was giving her Xanax for the combativeness & sundowners that comes on & makes them 10x meaner! In reading your questions & comments I could truly feel your anxiety. I still get it. After my Mom was diagnosed she had a hemorrhagic stroke & lived...that’s when I became her 24/7 caretaker. What a long road. You truly have to be a special kind of person to do what you do.
Definately start tapering the Xanax. My Moms NEW neuro now has her on seroquel. I give it to her @6:45 & she’s asleep by 10. Thing is she can’t get up & try walking around...she will fall. Sorry, this is way more info then what you need until you find out if she’s got the beginnings of dementia!
Yes, I suggested a neuro too for a cognitive test.
1. Expect to be there for most of the day. Find out everything you need to have ready, including other family members before you arrive.
2. What are your goals with your mom? I know it's a hard question but it has to be asked. What are you hoping for and what do YOU need? Write these ideas down so you can see if this team can give you the support you need. What are YOUR top three talking points?
3. Please eliminate the ear infection, UTI, or cold to be sure this is not the cause of your Mom's downhill slide.
4. I'm super excited your mom is taking her zoloft. Just be sure she does not quit taking it abruptly as the side effects can be awful.
5. Don't worry about the Xanax. Your Mom's physician(s) will figure this out for you. Are you worried that she will become addicted to Xanax? If so, again ask yourself your goals here. If she gets a good night's sleep with a nightly pill to do it, is this OK with you? If she goes without the pill and can't sleep, is this OK with you? At certain ages, we hope our parents are comfortable. Is someone at 80 or 90-years-old on this pill the same as a 20-year-old addicted to Xanax. Figure out what works best for you and your Mom.
In the beginning of my mother's dementia I had to hide her car keys and then disable her vehicles and then hide my car keys. Then take her credit cards and her sss number card. She was giving out her info to anyone who asked for it.
You have to do what ever you need to do to protect them. You have to live in their world and the logic is slowly leaving that world.
I had her primary make an appointment with a neurologist and with a few test and a brain scan it was officially diagnosed.
Maybe it’s different states?
How did the visit go to the Geriatric Doctor?
The doctor referred her to be evaluated and diagnosis was Lewy Body Dementia.
Now the medical group has her set up online and I can text everyone involved with her case and they have access to the information.
My mother is very capable of putting on a show for the doctor. Without my info to him he would have no clue about her problems.
Getting a good thorough exam is the best place to start. Observations are good to bring along. There are many medical issues that can present as some form of dementia and many of these are treatable. Reviewing medication would be a good idea as well. If it is early stages of dementia, many people can "fudge" their way through an exam or even the tests.
Before our mother exhibited signs of dementia, I happened to stop by her place on my way to work. She was in a miserable state and clearly confused/befuddled. In her case (we went to the ER and she spent the night in the hospital), it was most likely OVER-hydration. Often people consider under hydration, but drinking too many fluids can wash out the electrolytes in your system (keep in mind that the 8-8oz glasses of fluids suggested should include fluids you get from FOOD as well!) One of the symptoms of low potassium is "Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations." She was drinking too many fluids. Once her system was properly restored (drip bags), she returned to her normal nasty self!
As for the mini-test: we recently changed doctors (it was planned anyway, but just in time as PCP retired!) Mom was given the mini-test (she is in year 3 MC) and couldn't pass it. Back when this started, she might have been able to squeak by. They gave me the same test when I had my checkup a few weeks later. Mini is the word! When I suspected dementia for what I observed, we contacted an aide agency so we could start with minimal (1hr min) sanity and med check . Before scheduling anything, they sent a nurse who did a pretty comprehensive test (covered by Medicare.) She made recommendations for a locked/timed med dispenser and other suggestions to get us started. The plan was to increase aide days/times as needed, but after a few weeks she refused to let them in.
So, be sure to have a full thorough exam to ensure this is not some treatable medical issue. Some of what you have described could be attributable to dementia, but could also be some other underlying issue. Just testing her cognitive ability may miss any other treatable condition.
In order to prepare for her first visit to her current doctor, I wrote a 5 page report that I emailed before her appointment. I included factual observations of her physical capabilities, list of medications and how she took them, diet, habits and behaviors using my own experiences with her and those from family members. This allowed the doctor to have a little bit of knowledge going into the appointment. Obviously, the doctor's own observations were the most critical, but the information I provided helped to add context and gave them some idea of where to dig a bit more in their questions for her. I think that really helped.
You will be present for the first part of the exam, and believe me, the doc knows when the elder is “lying” but believes themselves. They also know when YOU are observing things the elder is denying. After a 5 hour time period, these experts have a really good handle on behaviors that you have seen and some that you haven’t. The outcome determines the course of treatment.
For my dad, the outcome was that he was NOT getting his drivers license back...(something he thought he’d be able to fool the doctor into signing off on) and taking Aricept. The doc also suggested assisted living, which he scoffed at.
i had the same exam, at 50, because of a brain tumor... In all seriousness, I have a baseline for my cognitive abilities, and because dementia runs in my family, it will be useful in the future. (Turns out I was fine) As for my dad, he’s not getting any better, but I do think that the answers and course of action was helpful. Taking him off the road was paramount, and it made me feel better knowing we did the right thing. He was worse than we all thought, and he was good at manipulating conversations to make ME feel like I was the crazy person for thinking he was a danger on the road. The neuropsychologist saw RIGHT through it!
Good for you for being proactive and noticing small changes, and trying to pinpoint what’s causing them. Behavior changes are SO hard sometimes, and unfortunately, the “dementia” diagnosis is used to explain many of them.
I wonder if some of their reticence to talk without the patient is due to HIPPA etc. Dealing with dementia, you’d think they’d know it’s going to freak them out and chaos will follow but I’ve yet to be with any Dr. who didn’t want to include my mother in the conversation. She never admitted my stepfather had Alzheimer’s, even in the last stages, which I’ve told the Drs. but they insist on acting like I’m nuts until she slips up and they see he in action. Then it’s “oh, now I see it” lol
My mom has the opposite sleep problem, she goes to bed at 7pm, so she’s up in the middle of the night wanting breakfast! Hard when you’re in an assisted living facility..
I leave the room, and I go talk to the nurse or doctor and explain that you would like to tell them what you have observed. Explain to the nurse that if you say these things in front of your parent they either deny it or gets upset that you told them.
then just go back into the room sit with your parent or wait for the doctor to come in.
And cross your fingers and pray you do not have to use a bathroom since you have already been!!!!!
A real sign of dementia for most is when they have no concept of time. Mom is always off on what day of the week it is. She has no idea what time of day it is or that 6 pm means I'm eating dinner so she shouldn't call. Phones and remote controls become very confusing to use, thermostats are foreign, anything that has controls or buttons is problematic. Mom could work the DVD player in April and by May was clueless. I had to turn off the answering machine because she couldn't remember the password or how to listen to messages. It's getting more and more difficult for her to make phone calls or to remember to press the off button when done.
Repeating the same story or sentence is common as well. Having to repeat yourself is very common, sometimes 10x in one visit. My mother suddenly started introducing me as her mother one day. Yet she could carry on a conversation from pure muscle memory. The Hello How Are You type of chats that she'd had socially for decades were and are still intact. This is the dichotomy of dementia.
Don't feel like you have to tell the doctor every little thing they're doing or saying that may seem off. Its a good idea to keep a noebook of happenings so you can remember the incidents when at an appointment. The mini cognitive tests ARE accurate enough to establish a baseline and to measure decline from that point forward. The decline can be pretty slow......you may notice a step down at some point that seems pretty big....but it can take years to get there.
A UTI will notoriously make the old folks act unhinged, every time! As soon as my dad started acting the least bit off, I'd have him tested for a UTI and it would be positive. Like clockwork. Same with mom.
If your mom wants to preserve her memory, get her some crossword puzzle books and sudoku games, things like that which help keep the brain working. Cut down on sugar intake and keep active with exercise is also good. Alzheimer's is now being called Type 3 Diabetes and thought to be related to high sugar intake and insulin resistance. Who knows?
Hope some of this info was helpful. Good luck!
- the financial PoA should know their banking info; what investments they have and where the paperwork is; insurance papers; pre-paid funeral paperwork etc. Their sensitive information needs to be locked down so that it is protected against abuse and scammers.
- go through their photos with them, for fun and to write down names, dates, places
Your plate is full so that's enough for now. Many are in your same shoes. Wishing you peace.
After you have done some simple tests with Mom write out the results for the doctor. ie cannot remember three words after 3 minutes or cannot draw a clock. Write down anything you notice JUST as you did for us. Share this information with him openly. Be sure the POA for health care is there and that doctor and you and Mom can all share information now. Do not do this secretly but with Mom there. Her reactions with doctor will tell a lot. Be upfront and honest.
Be certain now that all paperwork is done and that you know wishes for advanced directives, POLSTS, that there are plans for POA when and etc. That you know where everything is, what is entailed with taking on these duties and whether you choose to be the responsible one.
So sorry for all you are going through. This isn't going to get better or easier.