First to thank you all again for welcoming me into this warm, supportive community. Your responses to my first post about my Mom’s recent diagnosis were informative and extremely heartening. I feel much less alone in this journey and I’m so grateful for this space.
So tomorrow, I’ll finally be speaking to the Neurosychologist who carried out the cognitive tests and diagnosed my Mom and I want to be sure I’m being thorough in asking him questions.
Below is what I have for him so far… I am humbly asking again for your advice / input and if there anything else that is crucial I ask that I maybe have not considered? As always, thank you for your input.
1. What would “further medical evaluation” usually look like? Would prescribing meds (e.g. Memantine) usually come before a scan or blood tests?
2. How was spousal abuse measured in this screening?
3. What would be the best way to determine whether depression/PTSD (as a result of chronic stress from husband’s behavior, past traumas) could be the underlying “reversible” cause of her symptoms?
4. Is it possible that Mum’s “fear” of “testing” (e.g. drawing a “blank” under pressure) could have hindered her ability to complete these screenings accurately?
5. What is considered LOSS of independence - e.g. a COMPLETE inability to cook a meal, or saying she’s “forgetting” for fear she won’t make it correctly (which is what my mother experiences, but she gets through it without any issues)?
6. Based on these results, what level of care would you consider appropriate at this stage?
7. Was there anything that stood out to you as being most alarming / clearest indicator of a sign of dementia during testing?
I have so many other questions for him, but I have a small window of time and I want to use it wisely. This is so nerve wracking!
----
Updated to ask: Now I'm wondering ... is it normal to be given only a 20 minute window to discuss such a huge report / serious diagnosis? Should we not have been given a follow up consult to go through each area of the report?
All of that is just a given. I would let him first go over his findings. I would then ask if he had been made aware that Mom is in a difficult relationship in which you can only say her spouse "gaslights" her, making her feel she is "not right" and that she is made very anxious because of this.
I would ask him if an MRI is in order at all to rule out brain tumor or any possible measurement of gray of white matter, any evidence of stroke or other vascular problems.
You are right about the level of care issues.
I think that no matter what, this is difficult. You have your one chance. Tell him you feel a bit like Mom must have felt.........you need to get it right and get it quick or you are "out". And you would bet you are leaving with an assessment of anxious, because you ARE anxious.
I sure wish you good luck. So much depends on the "bedside manner" in these instances. And I am not saying that bedside manner equates with skill. The surgeon I chose when I had a dx. of cancer was the one in our institution with the LEAST good bedside manner, because he was the best at what he did.
I sure hope you get some more answers, or answers that are the least bit helpful. I found it was hard to "hear" and think and remember when I was meeting with MDs. You might ask if you can record, take a few notes, ask if there is any way you could be allowed to contact him if you think of something you believe to be crucial. Likely not, and I understand, but worth a try.
Sure do wish you luck! Hope you'll update when you come down off the ceiling after all this, and have a chance to recover yourself. (Maybe you will be lucky and not even have to HIT the ceiling; I sure hope you are.)
If the meeting is on Zoom, or if you can have it on a speaker phone, I suggest you have someone to “scribe” for you.
In a meeting like this, with such a time constraint, it’s difficult to ask questions and write at the same time, let alone remember what is said.
Come back and update us, if you can.
1. Medical Evaluation: My father’s neurologist referred him to a physician who specialized in memory assessment testing. He first interviewed me to get a baseline and then talked with Dad for about 2 hours, asking questions that seemed like a general conversation to put Dad at ease. Following the session, he sent a report to the neurologist with a copy to me. He was able to identify specific areas of decline.
2. Based on her own evaluation of Dad’s condition, my written observations as his caregiver, and the evaluation report, the neurologist did prescribe medications to give Dad the best quality of life (which was a godsend for Dad).
3. Her doctor will need to take PTSD into consideration. You are Mom’s advocate. Make sure you have a written list prepared for the neurologist to take into consideration. That will help you to get the answers that you need. You can always call back or make an appointment for a follow-up.
4. It’s natural for your mom to have concerns but I’m sure the memory tester will put her at ease. It’s not their first rodeo.
5. Loss of independence is usually related to a decline in the ability to care for herself. You’ll know when it’s time to intervene.
6. Have this conversation with the neurologist. Never hesitate to ask questions or follow up with a phone call.
7. No, dementia isn’t just one ‘thing’ that can be pinpointed. It might include loss of memory, language (can’t find the right word), inability to problem-solve and other thinking abilities that are severe enough to interfere with daily life.
Wishing you all the best in your journey!
Maybe making it clear at the start that you want to be as proactive as possible in protecting moms cognitive abilities and you need their help to understand what exactly mom is dealing with and the best way forward.
I really encourage you to not be put off and cut short. If you need a 30 or 40 minute call, so be it. If the doctor doesn't want to communicate, tell him that you want a second opinion and someone that is willing to communicate with you as mom's advocate. Often bringing their attention to their inappropriate, unprofessional behavior is enough to change it.
Best of luck getting enough understanding to take the next step.
I feel I now have a much better understanding of my Mom’s results. The outcome is that although it was a dementia diagnosis and there was no specified cause (which I already knew), it was worth exploring treatment for the depression since this could be considered a “reversible” cause. I explained the home life situation and he acknowledged that there could contributing factors there but said ultimately a psychiatrist could comment on that.
He did say, however, that even although there are notes on her history (e.g. her struggling with independence / ADLs) which would come from a verbal discussion, these are not what is factored into the scoring. It’s the cognitive tests that are designed to to check the “circuitry” and the diagnosis comes that.
He confirmed that meds (esp anti depressant to see if it improved symptoms) and neurologist would be prudent next step. However, he did agree that the NP/GP should have followed through with this from the start w/out my asking. Another issue to address at another time (I am not letting them get off easy).
So in short, we don’t know for sure what’s causing her symptoms (other than a ‘general’ diagnosis of dementia) so we have to wait for the neurology scan see if there are any visible issues in the brain and if nothing comes from that, it’s a “wait and see” situation.
In the meantime, I’ll focus on the depression - have urged her to try the Zoloft for a while, find her a therapist, get her away from her husband more often and see if these all help. She still doesn’t actually quite “know” about the diagnosis - I’ve told her but it’s not really sinking in (she’s blocking it out) - so it’s a conversation I need to have with her again. I’m dreading it. I don’t want it to make her “worse” from worrying.
This has been hard so far, there is so much to think about and do and it feels like I’ve had to go from 0 to 100 in less than a week. But without the support of all of you and resources on this site, I would be utterly lost.
Thank you all again for your helpful input (and will probably have more questions soon).🙏🏽
…”He confirmed that meds (esp anti depressant to see if it improved symptoms) and neurologist would be prudent next step. However, he did agree that the NP/GP should have followed through with **suggesting **neurologist referral from the start w/out my asking (instead of just meds)**.
My mom also "heard" her diagosis of Cognitive Impairment and apparently didn't take it in. She was concerned that they were going to tell her that she was "crazy" and since they didnt' say that, she was a happy camper.
I wouldn't force an acknowledgement from mom; just see if getting her away from toxic spouse and if taking the Zoloft consistently helps.
She DOES need to understand that the Zoloft is a long-acting med that is not going to have an immediate effect and that she doesn't take it/not take it dependent upon how she's feeling. She just takes it. Everyday.
Keep us posted!
Ultimately I will have to tell him at some point since keeping it from him could make things worse for Mom. I don’t see her having the courage to leave him and I can’t pressure her. On the other hand, I know that him having this knowledge means she will forever feel “judged” (I don;t think he is THAT horrible but after all the water under the bridge and the covert abuse, it would be hard to convince her otherwise - she’s become untrusting of him in this respect). So I am in a very tight spot.
And yes, I agree, best not to “push” the issue with Mom herself. For the time being (or until we have a scan that says otherwise), I’m taking the approach with her that “it’s probably just depression” - which is still very much could be, so it’s not a lie - and that is why she needs to continue with the zoloft (and stressed to her she needs to give time to work), go for therapy and see how it goes….
Baby steps and one day at a time.
It IS anything but an exact science. It worries me that your Mom is a bit in denial as that makes it so much more difficult. My brother was not in denial where his diagnosis of probably early Lewy's dementia was concerned (diagnosed mostly by his symptoms). He was he said, very sad and concerned about his future as it would mean loss of control,and he and I are BOTH somewhat control freaks. He said he was happy to know there were REASONS for what he was experiencing and he could learn more. He died before he could descend further into his disease, and in fact once he made me Trustee of Trust, sold his last little home, moved into Assisted Living and had me paying all bills, doing financials and sending him a monthly statement he did nothing but improve. The hallucinations involved almost completely disappeared. He was so much more relaxed and we would sit by the hour discussing how he "saw" the world differently. He would have been a marvelous study subject.
I love how you are there for your Mom, and it reminds me of me and my bro, having been Hansel and Gretel to one another in the woods of life, as I describe it.
Don't force anything onto your Mom but do continue to say what the docs found, and how less anxiety will help her, how she is an individual, not a diagnosis, and how she may be doing nothing but IMPROVING with good loving care. Just keep stressing how important it is for her to have LOVE and SUPPORT now, and how you will be there for her when she needs you to help with what she needs help with.
You are a pleasure to have on the Forum and I hope you will stay, update, and help others here.
Any meds they prescribe are going to progress her dementia even quicker.
4. yes. these tests are not very good.
There's not much a neuropsychologist or any other neurologist can do for your mother which is why 20mins is sufficient. Your mum needs proper action to get her health back on track. When that is appropriately addressed and this takes time, because dementia takes decades to develop, then cognitive issues reverse as her health balance returns. It's a no brainer but we've been so brainwashed to rely on meds and to believe that there is no coming back from brain disease. My research shows that in most cases except late-stage disease progression, it is reversible and her brain health can be restored. Health creation and healing are however not the focus of the medical industry.
Hopefully, your mum's dementia will progress slowly rather than quickly. Keeping her stress levels down will help with this. Keeping her hydrated will also slow disease progression.
My mom had a stroke and while she has aphasia as a result which complicates things she also has dementia which is unrelated but being able to attribute her issues and inability to live alone anymore to the stroke makes it more acceptable for her so we go with it. She knows her memory and ability is getting worse and that her neuropsyc exam indicated she shouldn’t live alone but we are careful not to call it Dementia or Alzheimer’s and they didn’t make a diagnosis that I recall, I think that was up to the Neurologist but it’s been a while. We were fortunate I guess that to get the results of her exam the person that did the test sat down with her, my brother and I for probably an hour going over each section of the test and sharing the results as well as answering any questions we had. This was pre-COVID though so the phone probably isn’t a surprise. She also heard the good things and made them what she wanted to a large degree but we all were part of the same discussion which was helpful and the tester helped lead us through helping her hear the important things. This is where I learned some of the white fibbing skill. Good luck on your journey!
A friend, who is a psychologist, suggested I try framing the neuropsychological testing as "checking brain function for the purpose of intervening early with medication that might control or slow any impairment. L's radar is on quick alert if I dare mention anything close to dementia...for all the same reasons I've read here. This may have been an easier way for him to process since it was a delay in diagnosing his hereditary transthyrein amyloidosis (hATTR) that allowed the disease to advance further than it had to.
THanks to all for sharing similar journeys - we caregivers seem to offer the only road maps to follow in helping ourselves and our loved ones.
You give the impression you want to control/micromanage the call with wanting to discuss each area of every report. If you trust him, you don’t need granular details. If you don’t, he could explain til the hogs come home and you won’t be convinced.
I suggest ultra concise wording designed for concise answers - not let’s discuss and rehash.
You also need to give the doctor a chance to explain before you start questioning him - if you get answers as he explains, fill in the blank and ask for questions he didn’t answer.
I think this is what you are asking:
1. Do you have a prognosis? [dementia] and/or [something else]
2. Did the screening show spousal abuse? [yes/no]
3-4. How did her fear and depression influence her testing? [answer]
5. (Refer to “Activities of Daily Living” then frame the question)
6. What are the next steps (further evaluation, treatment)? [list them and who provides them]
7. What care does she need now? [care] [how long] [who provides it].
Then at the very end of the call, if you need to, read back the answers in the [ ]. A good recap can be done in 60 seconds.
Btw, if you have the reports, read them and highlight the top concern.
Good luck. Don’t self-sabotage with a trip to the weeds.
My GYN told me to take nothing that is suppose to lower cholesterol. Because the medication cannot target just one area of the body. The brain is also effected and the brain needs cholesterol to function properly. When my PCP recommended a statin, I said no. He did not argue. Recommended Red yeast. No, haven't gotten around to trying it.
The rx he gave her was Donepezil. It has very few side effects and seems to help both memory and mood.
He advised us that she can be independent as long as she can manage her medication and food. I would say personal care as well though.
Perhaps print out and give the doctor a copy going line by line with each question.
Before the end of the session ask about
scheduling a follow up appointment.
Medication and dosage may need to be adjusted….ergo the follow up appointments
ask if they have any other recommendations.
we keep a daily journal
With Medication, food diary etc to check what works and doesn’t. When the medication is given can be significant as well.
I have appointments every 6 or 8 weeks
with my 99 yo Mom’s doctors.
Additional questions to consider:
Which types of therapy would your prescribe to help her?
With therapy and medication, in what way(s) will her behavior change or improve - in a matter of weeks, months, and years?
What would be considered the usual course that her illness will take during her life?
How should I prepare to meet the challenges she will have in the next years of her life?
What resources are available to help mom and myself meet these challenges?