After EEG and MRI - Questions for Doctor

I just know that with our situation, we know some of these issues as they come up. yes, stumbling/falling is common, and even more-so as 'this' progresses. If a LO is stumbling or falling, then any stairs should probably be at least supervised, with someone behind when going up, and in front when going down, keeping a firm hand on that railing.

For driving - is LO forgetting things or misplacing objects? Since driving is more intense, that is often 'removed' earlier than later. We don't want them to hurt themselves or an innocent party. We took MIL off the road when we found out she got lost 'once'. After we took her off the road, it turned out she had gotten lost several times, and then admitted she came to an intersection and forgot what to do. However - if you can let the doc be the 'bad guy' to tell him that, it would take it off of you. also - if diagnosed, insurance doesn't have to cover anything if something should happen.

Toileting independently seems to vary, as I've learned here... Some folks have had to be careful that the LO doesn't flush an abundance of paper at once, or even a towel, or a soiled adult-pants. And sometimes, you won't know this until there's an overflow or clog. MIL is still ok, for the most part, but there was an issue, so we took the precaution of putting a full-zip mattress protector on her bed.

You could ask the doc what type of dementia you are dealing with. Sometimes that can make a difference with certain medications.

A lot of questions I've had are answered right here, but there is also a board right here in the forum about things to ask...

https://www.alz.org/alzheimers-dementia/treatments/questions-for-your-doctor

@concerned_sister

IME, neurologists are great around the diagnostics, but not so much the stages of caregiving. You and the rest of the family probably have the opportunity to get a more accurate bead on his ability to function in real life than a doctor will have from scans, a 10-minute MMSE or talking with him for 20 minutes if you can be truly objective.

I would ask about driving and managing finances. It would be great if the doctor is willing to advise him not to do either, so family doesn't have to be the bad guys. I was lucky that dad's neurologist banned both even before he was officially diagnosed, but many doctors won't. Still, it would be prudent to stop now for a lot of reasons-- beyond the moral ethics of allowing someone with dementia to potentially harm some innocent victim to avoid upsetting their LO-- this can cost you everything you have if his insurance won't pay and he's sued with this information in his medical record. In most places, POAs can also be sued for being negligent in allowing the PWD access to driving.

Things like fall risks and toileting/incontinence issues are going to be very individualized. You'll know he's becoming a fall risk when you see things like shuffling and holding onto furniture while moving around a space. You'll know he needs assistance in toileting when he starts skipping steps like flushing or handwashing or when you find used TP on the vanity or in the trash basket. This generally precedes incontinence which starts as wetting accidents occasionally before progressing.

HB

There is a tendency to want to wait until a problem arises before taking steps. But what is discussed here is becoming proactive. Become prepared because anything might happen at any stage. Know what to expect, but not everything happens to every person.

Iris

When my lo was diagnosed the doctor said no driving and no living alone. She was not happy about it but accepted it. There is no way that would have happened if it was me or my brother that told her that. At a follow up visit we asked about her not showering when no one else was home. The doctor agreed and she accepted it. Before this we tried but she said we were being ridiculous. For us it was more than just the doctor being the bad guy. She actually listened to the doctor. I’m sure that may not be the case for everyone, but it’s worth a try. I also believe that a note to the doctor is the best place to inform them of difficult topics that would upset the pwd. I told the doctor that mom needed to be reminded to shower. Mom would be mortified and angry if I mentioned that at an appointment. We do a follow up every 6 months with the neurologist PA. I have found it to be very helpful. My brother is slow to accept some of the changes I suggest as well and the doctors input has helped convince him also. As far as what issues your lo may face going forward, no one can predict what will happen. I think I would stick with current issues and concerns.

He may understand his impairment today but may not tomorrow. In nearly all PWD there comes a point where the brain no longer computes its deficits and then we caregivers have to use therapeutic fibs and work behind the scenes to do what needs to be done. And the falling, incontinence etc are also nearly assured. It happens on a different time line for everyone, but this document can give you a general idea of averages. Look at the stages starting on page 12 it tells you symptoms and how long each stage usually lasts. Stages 5-7 are the ones where day to day life is significantly impacted, and those stages each last 1-4 years. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

If you can get the doctor to say he shouldn't drive that's huge. Even if he doesn't remember the doc saying that you can use it to your advantage. Many people have to make the car disappear because out of sight out of mind. If it's sitting right there the PWD may still try to drive it long after their license has been revoked. Or disable it like remove the battery and use a fib - the mechanic is waiting on a part. If he gets a dementia diagnosis on his medical record and then gets in an accident or god forbid hurts or kills someone it could be financially devastating for him and his wife. A PWD in my state recently got behind the wheel, forgot to turn on his headlights, and struck a pedestrian severely and permanently injuring him and just kept on driving. Can you imagine a person with dementia spending the night in jail, let alone the fall out for the months after such an incident? Driving is something family members have to take care of early due to the risks. Have the doctor flag the DMV so he will have to take the test, or you call the DMV yourself to report him or take his keys away or disappear the car or whatever it takes. We never had to have that talk with my mother; my dad or I just always offered to drive her where she wanted to go and she would let us and pretty soon they got a new car with way more bells and whistles than she was used to. I don't think she could have even figured out how to start it with all the new tech. We kept the keys hidden just in case.

When the PWD is still with it and following a conversation it is often easier to communicate issues to the doctor privately. Use patient portal or bring a list or note with new symptoms or problems to quietly slip them or ask for a moment out in the hall. It's very difficult to maintain your loved one's trust if you are saying things to their doc they believe to be untrue due to their cognitive deficits.

Good point, HB. That’s it in a nutshell: they don’t know what they don’t know.

Have to agree with Iris. Your brother is giving you classic examples of lack of insight -"maybe it's stopped.". he should not be working, driving, or getting on the internet, period, much less on financial sites.. I'm afraid you all are in for a rude awakening. I know this is a lot to absorb in a short amount of time and im sorry.

As I’m reading these posts, I agree with @harshedbuzz. I personally tend to try to grasp at any way to control tragic, difficult, uncontrollable situations. I’m sure we all do. I am wondering if you, as many people do, are overestimating your loved one’s ability to reason, use logic, have a conversation and manipulate the information he’s given to draw conclusions, and be allowed some freedom to “manage” (meaning even log into) his financial accounts. I suspect he has already more compromised executive functioning than you realize. I would err on the side of what you consider “overprotecting” him. You won’t be removing his independence. You’ll probably be saving him from harm. My 2 cents.