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?
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The guesses are based on behaviors and other factors.
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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.
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.
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.
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.
Here are a few examples of my mom issues that were included in the letter plus many more that were listed:
My mom was forgot how to find the hospital my father was in and kept going to the apartment building my grandmother used to live in and was upset they wouldn't let her go up to my dads room.
Every day my father was in the hospital I called my mother just to check on her, but after my father was home for 3 weeks one day when I called she said I can tell you now that your dad was in the hospital. I told her that I knew that and I called her every night, but she didn't remember it.
My mom usually went with my dad when he went for physical therapy, but one time she didn't and when my dad came home the stove was on with a pan on it
One day when I called my father said they were filling out some legal paperwork and I could hear my mom in the back ground wanting to know how do I spell my name.
This is a very small example of issues my mom was having. Those letters were a heads up to the doctors and at the appointments no fingers were being pointed as you did this or said that, the doctors already knew. It made handling the appointment so much easier. For the neurologist appointment, I was unable to get off of work and make the long trip, so my brother went with my parents and when the doctor told everyone that my mother did not passed and my mother has Alzheimer's, my brother and dad were shocked, but it didn't seen to faze my mother. The neurologist put her on medication to help slow the progression of Alzheimer's, which she was on for a couple of years and then as the disease went into later stages we took her off of it.
So we now actually had a diagnosis's and now could learn and check into how to handle this, what arrangements needed to be made. Unfortunately or fortuntely my dad passed away 7 months later after my moms diagnosis, so he did not have to see and try to take care of my mom as this dreadful disease took it's
toll. My parents were one of the rare few that were so in love with each other for their 65 yrs of marriage. My father would have never agreed to put my mother in a memory care center that would have killed him alone if he had to do that.
Do the letters with his doctor's, if you don't feel the doctor either didn't take the letters seriously or didn't read them then make a consultation appointment for yourself to talk to the doctor (realize you may have to pay for this appointment yourself). Definitely go in with him at the neurologist appointment, because he isn't going to remember what the doctor says.
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