My 67 year old husband has his follow up neuro appointment next month. In June, the neuro said she considered him "borderline" for cognitive impairment but she did not know at that time what form it might be. She wants to see him every 6 months. MRI was unremarkable, but she wanted a "baseline" MRI now for future comparison.
I do not want to tell the neuro, in front of my husband, things that I have observed that may...or may not...be related to cognitive impairment. We are asking her to rule out other possibilities such as ADD, HF Autism, etc. My husband remarks to me (half jokingly) now and again that he thinks I am trying to have him "committed." He is by no means in any middle or advanced stage of cognitive impairment. But he has short "episodes" of seeming confusion, he forgets things a lot more now and before his PCP put him on Lexapro he had gotten mean and nasty. He retired early and his brain is not being exercised as it should be...and he refuses to consider a part time job. I do not want to sit there at the appointment and, in front of him, go down the list of things I have noticed, only to have him blame me later. MUST I give input for the neuro or will the testing and her talking to my husband allow her to make a properl diagnosis without my input? Or will the neuro talk with me alone at some point?
After that horrible experience...I got a different neurologist...
This time I had two phone conversations with them prior to our visit...
So, same advice repeated...talk to them privately and discuss your observations and ask then to explain their process...
Example:
1. She routinely confuses the TV remote and the phone, then gets upset when the remote won't make calls.
2. She can no longer write a check correctly...puts the company's address where the name should be.
3. Her neighbor called me to report that she rang his doorbell at 2 am and said she was ready to go to bingo.
BTW...all of the above true for my my mom.
It is important to get a correct diagnosis because some medications, sedatives, for example, can be very problematic for certain kinds of dementia. My husband was diagnosed at Mayo Clinic following a reaction to anesthesia.
I think the answers you have here from others are really insightful and helpful. Good luck to you!
Please be honest. Tell him you are being honest. If he says NONE of that happened then tell him you thank him for sharing his own perspective with you and you will consider all of it.
Whatever you decide to do you need to make an honest, short, concise list for the MD.
MY DH has had multiple health issues in the past 13 years and I have been 'in' on ALL of them (except the psych doc b/c I FORCED him to get some help and he would generally come home and tell me what went on in sessions).
If DH had a cog eval (and I am sure that is in the picture in the next 10 years) he wouldn't care if I were there or not or had been 'signed off' as being OK to be involved.
It seems to be a 'rule' that is fairly loosely followed. I went with my FIL to a LOT of drs appts...and I KNOW I wasn't on his "ok" list. My daughter came with me to several cancer dr appts and she wasn't on my 'ok' list either. Nobody ever said a word.
What type of major neurological disorder was mom diagnosed with, Piper?
My mom has chronic small vessel disease and other vascular issues and history, so in her case it's mainly vascular. However it was enlightening to see how other factors have contributed.
For some this kind of information is valuable, in other cases like your mother I guess it wasn't needed. Every situation is different.
For instance, do you need to know why husband exhibits certain behaviors or is it more important for you to know why the changes in his brain cause particular problems?
Are you keeping a record, for yourself, of what you see that concerns you and the dates, time of day, and length of time the episodes occur?
Will the neurologist respond to phone calls from you? Might you ask her if she would consider a baseline psychiatric/psychological assessment a worthwhile addition to developing a meaningful profile for managing his care as circumstances move forward?
It seems to me that the line between maintaining client planning and self management and assuming more and more responsibility as caregiver is a very fuzzy, messy, gray area, with caregiver typically being in the more difficult and awkward position of the two.
If you see a NEED to gently take over the reins based on your observations of your husband, ask yourself if what you are considering is based on your husband’s safety, comfort, and overall welfare, then make your decisions accordingly.
If you are acting out of love and respect, your efforts cannot go far wrong.
I do make notes when I notice something unusual in him. I did start a letter to his neuro, which I will send asap. One huge thing that has become more apparent in the past month is that I have to remind him of things over and over and over again before he will take action...like getting his car inspected, clipping the dog's nails, fixing a leak in a gutter, etc. This is becoming worse lately but, again, I ask myself, is it normal for his age? Or is he just not interested in any of those tasks so he forgets to do them? He has so many symptoms of HF Autism...I do not want him to be misdiagnosed with cognitive issues if that is not the real problem!
I have gently taken over the reigns with many things and he is more than happy to let me do so. Less for him to do! If he can go out to the garage and work on his projects all day, he is happy to do so.
I just need to know what is going on so I can start planning the future. And it was not even me who even considered dementia as a possible cause... it was his PCP...and I was shocked when he tested him in-office and referred him to a neuro.
https://practicalneurology.com/articles/2016-july-aug/a-primer-in-neuropsychological-assessment-for-dementia
You do not have to give input as the testing scores will speak for themselves. Just ask the neurologist to order the test as a baseline.
My mom got one of these tests after her initial MME test indicated impairment. Those short tests like the MME that are done during an appointment are mainly screening tools, the neuro-psych eval is much more in depth and they can not be fooled.
It would be a good baseline for your husband whether he meets the criteria for dementia or not. Oh by the way, since the DSM-5 came out dementia is now called "Neurocognitive Disorder" and it can be major or minor depending on the test scores.
Good luck.
Note your observations in this manner.
Be concise but give details if you can (If this makes sense)
Focus on the main concerns that you have.
You can also ask if the doctor would talk to you after or before the appointment. This might not be possible given time restraints.
When you send the letter, include details like the time of day, day of the week and any significant things that occurred just prior. You may see a pattern of occurrences in the afternoon or evening, the day after an outing, if he has gone too long between meals, if alcohol is part of your lifestyle, after meeting an old friend, etc.
I worked as a MOA for years and often passed notes to the doctor prior to appointments. It is best if you can get the letter to the doctor at least a few days prior to the appointment, to give them time to review it.
The guesses are based on behaviors and other factors.