I finally got my mom to go to a neurologist and the doctor did a 5 minute series of questions and told us her memory is worse and she prescribed Donapezil and suggested mom not live alone anymore. There was no post-visit treatment plan and diagnosis paperwork, no portal to access info, nothing. I called the office and asked that they forward the info to mom's PCP and to be given a formal diagnosis. They said dementia and that they don't know more and the doctor does not have any intention of exploring further because the treatment is the same regardless.
Is this normal? It seems completely inconsiderate to me, the person who has to find her care and possibly assisted living. Maybe she is trying to avoid the full diagnosis so that she has more options?
Has anyone else dealt with this? Is it some sort of strategic omission or just negligence?
Did we go back? No, we just watched her and made our decisions from there with consultation from the MC facility.
IMO they were useless.
I don't know if this is a matter of not being able to discuss because you are not POA or what the problem is but there is a serious problem here and it is one that requires exploration. You will need to follow up and you will perhaps need an elder law attorney who will give you pointers and options moving forward.
Again, this inability to give any documentation as to safety for this patient functioning on his/her own is ABNORMAL.
Thanks I said. Now I am 65 and wondering if I should proactively look into if I am next.
Best wishes to you.
Additionally, I am not looking for hope. I am looking for proof that there is none so I can do my job. My mom was an abusive narcissist throughout my life and would have parked me in a facility years ago as she did her mother. I have been far kinder and it is costing me my career, travel, and health care. I got POA a year ago when mom was finally willing because she is desperate to never leave her house and needed a reverse mortgage to continue living there. I was the only one to help her. I am looking for validation so I can get rid of her dodgy assistant and take care of myself!
My kids just graduated college and so I decided to go on leave from work and get mom situated once and for all.
* I do have a POA that gives me all of the powers listed on a "Uniform Statutory Form Power of Attorney".
* My mom's symptoms are consistent with Middle Stage Alzheimer's Stage 5 and even Stage 6
* She is also legally blind due to advance Macular Degeneration so that makes it difficult to differentiate some symptoms, such as when she doesn't recognize people, confusion about locations, etc.
Dementia is fatal and no treatment exists. Even Teepa Snow says that. I'm no clinician, but I believe that definition, "fatal with no treatment", has to be put in context. Not all dementias are irreversible, progressive, neurodegenerative diseases. Recently, Billy Joel was diagnosed with normal pressure hydrocephalus, a rare non-fatal and often treatable cause of dementia. The late Kris Kristoferson was diagnosed with Alzheimer's, but later correctly diagnosed with lime disease, a non-fatal treatable cause of dementia. Maybe these should be called “pseudodementias”, but Teepa doesn't differentiate.
My wife had brain scans, blood work, and almost a full day of a cognitive evaluation with a neuropsychologist who still couldn't definitively say she had a progressive disease. So diagnosis is difficult. Your mom may, indeed, have AD, but continue to find a board certified neurologist who can give her the proper diagnosis.
"You don't mention what her symptoms are; why you sought a diagnosis."
Mom has gone in and out of various forms of symptoms but the most difficult part is that she also has Macular Degeneration and is legally blind. The good thing about this is that she could not renew her drivers licencse. Also, she now has to sit in a chair 3 feet from her 65" tv to see the screen at all. She used to lie in bed about 22 hours a day so sitting is a little more active and she falls asleep less throughout the day.
She repeats herself constantly and memory is very spotty. Some things she remembers and some she doesn't. It's hard to tell what is denial. For instance, she repeats over and over that she has never fallen yet she had a period where she was passing out a lot from orthostatic hypertension. We removed Desipramine from her rx list and that solved that.
She completely relies on others for all of her financial tasks partially because she can't see and partially because she doesn't have the werewithal. But it's very difficult to differentiate something like this between the dementia and the blindness.
She had rats in her house but couldn't smell it like I could and couldn't see the droppings and urine everywhere. Her dog goes to the bathroom in the house and she can't see it, yet she denies that it does it. Her house is not a hoarder mess...she has cleaners weekly and it is very nice to the naked eye. She is not living in squalor and will criticize me for even leaving a cup on the counter but she is oblivious to rodents and ants.
That sort of thing.
This is why I think it is even more important to diagnose her neurologically in order to tell which is which.
I don't think I will be able to get her to a second neuro visit. She won't go now. She has dug her heels into her denial and is fighting me on everything, even though everyone else's enabling delayed her getting the meds that could have helped her long ago.
Most definitely DO have some idea of the type of dementia involved after a full workup and testing; was said full workup and testing done? Are you the POA? Were the findings discussed with you? Were any scans such as MRI or CT done?
It is very common for neurologists to have to write letters that confirm a diagnosis of dementia and its severity in terms of being able to do executive functioning, live alone, and etc. and this is REQUIRED by many POA documents, and etc. I would inform the neurologist that you require such a letter that will satisfy legal requirements for you to act for your parent if you are the POA. If you are NOT the POA we are talking a serious problem, because once you have the document your elder is no longer considered competent to request you act as their POA. Competency is required to appoint a POA.
Now if you are not POA or guardian or conservator then you really don't have rights to any information from the doctors and will need to see an attorney about getting said rights set up.
Sometimes it is unclear, especially in the beginning, which dementia is involved. Until autopsy after death it is often difficult to fully ascertain just which dementia is causing which problems. But if someone does have dementia severe enough they cannot function for themselves them the MD can complete a letter documenting his diagnosis. My brother's, diagnosed by his symptoms was "Probable Early Lewy's Dementia by symptoms".
No, the neuro did nothing but a 15 minute office visit. I am going to ask for another neuro. This one gets the lowest ratings of any in mom's area.
Does your mom have memory problems? That’s the hallmark of Alzheimer’s, and Alzheimer’s is the most common form of dementia.
If you suspect she has a different kind of dementia, it might be worth pressing further, because some meds prescribed for Alzheimer’s can have a negative effect if she has another form of dementia. But honestly, you will know that soon enough anyway. My dad had frontotemporal dementia and the first drugs prescribed made him DRAMATICALLY worse within 2-3 days. Then when he got on the right course of meds, it helped considerably manage his behavioral problems.
Anyway. The other reason for a formal diagnosis would be if you need it combined with DPOA to have her declared an “incapacitated agent” with her bank, social security, credit cards, and the like. You don’t mention any problems along those lines.
If you are already looking into assisted living — that’s good. I’m not sure whether they need any formal type of dementia diagnosis. You can ask them.
Its hard. We spend our lives looking for the Source of the problem and the Reason and the Solution and the Cure. But there is no cure for any kind of dementia or even much hope in slowing its progression. It requires a reset of expectations and approach.
I honestly think our understanding of dementia is in its infancy.
I wish you all the best.
I believe you might be looking for hope, but hope doesn’t live there anymore. I’m so sorry. The reality is harsh. I’ve learned that it’s best to accept early on and move forward from there. We can’t help them unless we roll up our sleeves and get on with what needs to be done.
Best of luck to you.
Perhaps get a second opinion.
A score of 9 or less on the test suggests severe cognitive impairment, indicating that the individual may have significant challenges with various cognitive functions, including memory, attention, language, and executive functions.