After EEG and MRI - Questions for Doctor
After reading here for a while, and becoming familiar with the Tam Cummings assessment tool I have some ideas of what's coming. I have read here that a good strategy is to provide the Dr a list of questions/concerns to be addressed during the appointment, but to do it out of sight of the PWD. There are things I've read here that I'd like to plant as questions to be sure these points come out of the Dr's mouth. Any suggestions to add?
With this diagnosis, what impact will this have on his driving?
Is stumbling/falling common as this progresses, and will it be safe to go up and down stairs at home?
(Is it too soon to bring up the following as a question?)
At what stage does toileting independently become a problem?
Comments
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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
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I would never want to have those questions discussed in front of the PWD.
What I think is important is to let the Dr know before the appointment the things that you have noticed since that last appointment.
Yes, there will be an impact on your husband's driving. He will have to stop.
Yes, stairs are going to be a problem.
Yes, balance is going to be a problem.
No one can predict when any of the above are going to happen.
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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
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I think you've gotten excellent advice. By reading the responses you can see that the doc won't be able to give accurate answers to some of your concerns. I wouldn't ask a question (other than having the driving/financial discussion) if you already know the answer or there is no answer. You're wise to consider all this prior to the appointment, it will make your time with the doc much more productive.
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Thank you all for your input. Although brother has trouble getting words out, it seems early enough to take information in. Part of my thinking was let the Dr be the bad guy to let some of this come out of his mouth.
I'm in total agreement get him off the road ASAP. Someone recently made the point that his decision making has likely slowed down, and he'd be unable to react to someone entering his lane. I like the framing of that, in the case he still believes if he was alone on the road he'd be just fine. To my knowledge he hasn't got lost yet.
Re the stairs question, the bedrooms, bath and showers are upstairs in their home. They are considering paying off the mortgage early. I thought it would be wise to at least have this discussed as a danger before they meet with the CELA in case it affects their view of the wisest course of action.
The points on toileting are more than I considered. Perhaps I'm looking too far down the road. Part of me wants him warned before it happens . They can have depends or other products in the house for when that day comes...it's the disease and not his fault.
Thanks for giving me things to think about.
I'll go check out that link to questions.
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FYI, if it seemed I ignored the advice on discussing finances, my brother has already turned this over to my SIL. While he was in for the MRI, I had time outside his hearing to discuss the need for a CELA, though I had mentioned it to him last weekend. I told SIL I went to the law office and picked up business cards earlier this week. She asked I give those to them after the appt to discuss his results. Per her English as a second language she's made it clear she'd like my involvement at the appointment.
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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
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Iris, thanks for your continued support. I'd like the DMV restriction to come out of the doctor's mouth. But even if it doesn't once we have the diagnosis in writing I'll be proactive.
I like the wording that he won't be fast enough to react to someone else's mistake rather than confronting him with he's more prone to start making mistakes. I can also push the insurance aspect. We seem to be days away from getting something in writing, then I can act. Note, since his PCP appointment in February discussing signs of cognitive decline, I've always done the driving when we're together. (I therefore can't say I've seen a decline in his skills.) Last night during the MRI I told my SIL she needs to take over the driving. They own a car (hers) and a truck (his). Last night after the MRI he told her she needs to learn to drive the truck and be able to drive it on the highway. I don't know if anyone involved in the MRI said something to him or he just sees the writing on the wall. Hopefully there won't be much push back if I have to take him to DMV for testing rather than the doctor revoking his license.
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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.
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Thanks for your input Chug. I'm glad your loved one responds so well to the input from the PA.
Regarding current issues and concerns...I'm a planner. There are things like setting up an appointment with a CELA, and learning about the "medicare spend down", that call for planning ahead. Hopefully after we've helped him adjust to the change and have the start of a plan for the future we can go to present tense mode.
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FYI, the planner in me felt good today that we set things up so that I can log on to various things on my brother's behalf, including his password vault. It's nice to have that todo done.
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Just another caution, when you say "helped him adjust to the change,"---you can't assume that he will respond rationally. He may not recognize his deficits-most don't-and won't comprehend the need for changes. The point is that you have to do it anyway. You learn workarounds and you tell compassionate lies to keep them safe.
I assumed that if my partner was told she had dementia (by me or our doctor) that she would know what that meant and would therefore understand the need to let me make certain decisions. That was ten years ago. To this day she thinks she's fine- and she's been in memory care for two years now.
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M1, thank you for the advice. My thought had been as we're going through this diagnostic phase, and as he has shut down his side business he has recognized his deficits. But I know even though he recognizes his limits on most things now...that doesn't mean as he progresses, or even moment to moment, he'll see he's not his old self. I guess I've been telling myself, he'll forget that he learned that there are things he can no longer do...but there are some deficits he may never 'learn' and accept. This isn't that he'll later forget, he just may not recognize some now.
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I totally understand the need to prepare I’m a planner too. A CELA is important as well as getting things figured out for Medicaid. My point was just that the doctor can’t predict what is to come and when.
You mentioned being able to log into things for your brother. My mom’s doctor linked her health care online portal to mine and made it very easy to to access all her medical info.
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HI Chug,
Unfortunately, both the neurologist and the PCP do not have online portals. I had hoped I could access things on his behalf on-line. I take your point that Bros progression is not predictable.
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To all who have taken the time to offer advice and insights, thank you.
Last night it hit me how much it felt like I had a personal coach through all this. I appreciate you each taking your time and energy to coach me through this.
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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.
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Cobbling onto what MN chickadee said, I am certain dad had some real awareness of his memory issues in the early and even middle stages. He wasn't as cooperative as your DB is currently and took steps to avoid others recognizing his deficits. He was able to convince mom his changes were "part of the normal process of aging", but he knew I'd pick up on them and could potentially prevail in taking away his independence.
Initially after he was diagnosed in the middle stages, he would admit to forgetting something but would minimize it claiming he could recall things like childhood phone numbers or that something he forgot came back to him in the night. But there was some significant anosognosia around some of the critical losses evident even in earliest stages. He had no idea how impacted his spatial reasoning was (he was constantly scheming to convert a 10 x 6' attic storage into a jack 'n' Jill suite with a connecting bath). With his lack of empathy, he had no appreciation of the toll his disease took on my mom and me. He was clueless around losses in executive function and reasoning skills one needs to manage IADLs. Basically, he didn't know what he didn't know.
HB
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Good point, HB. That’s it in a nutshell: they don’t know what they don’t know.
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Thank you Marta, HB and chickadee,
You are all providing valuable input. I've been starting to wrap my head around the DPOA not just as allowing us to help him with things, but it will have to be instead of him. Perhaps it's through a password switch or some such thing. I spoke with older brother this morning. He thought I was given great advice to seek out someone from the Los Angeles chapter to can help SIL re language and culture. Living with her husband she'll be on the front lines of not letting him use her keys to drive, making sure once passwords are changed to not letting him process transactions any more. I think those of us in the circle of care around him need to understand he will not recognize his limits, and at times we will need to kindly enforce that he stay within his abilities. Thanks for sharing with me your journey down this road.
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Re "That’s it in a nutshell: they don’t know what they don’t know."
I spent some time with DB today. I helped him verify he can log in to various financial sites. After doing that, and discussing a few things, the subject turned to the pending results of his MRI. He speculated, maybe it will show it stopped; I'm doing better now than I was six weeks ago.
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Re: logging onto various financial sites. To put it in another nutshell, PWDs cannot manage money, they can spend willy-nilly, they can lose money, and they are at risk for being scammed and taken advantage of. Be forewarned.
Iris
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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.
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Iris,
Yes that's where we're heading. We need to see how he gets in, passwords etc. before we can change it over to his wife etc.
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M1, thank you. I agree with Iris as well. This is on our path to getting there. He starts carpooling this morning. More steps to follow after MRI results are in and we talk to the neurologist.
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I've heard that one before. I'm sorry. I can totally appreciate the wishfulness that all of the concern is for nothing.
I worry that you and your family are focusing too heavily on the results of the MRI. This isn't like a COVID test where a little blue line is going to pop up in 10 minutes. The test can rule out NPH, tumors and stroke as a cause of cognition changes and it could show a loss of brain volume consistent with Alzheimer's. The doctor might use this test as a baseline for comparison at a later date-- you may leave the appointment without a clear-cut answer to your questions.
Has your brother had any neuro-cognitive testing done? This would be the 4–5-hour battery of testing to tease out areas where his cognition and reasoning skills are most impacted. This can be helpful in determining not only the kind of dementia, but where his losses are most profound.
HB
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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.
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HB, I used the quote from DB as an example of they don't know what they don't know. As we were doing his various login's and calling support lines where necessary his deficits were clear. Not knowing his mother's maiden name and other prompts I had to write down for him. I refer to the MRI in a sense of this then that. With DB being unable to appreciate his deficits, I think this is the best hope of making it clear what's going on and getting buy in from his wife (and youngest brother) of the changes that need to be made. (I'm there. If there weren't privacy issues I'd quote an email he wrote that make it clear how broken his reasoner is.) DB has said he'd sign the legal forms after the MRI results. SIL has asked that I wait til after the MRI results to set up the appointment with the CELA (oldest brother and I are picking up the cost of the appointment). I'm an influential member of the family, but I need to recognize where the edges of my authority exist. With complete authority he'd be on a leave from work, we'd have met with the CELA shortly after I heard of this specialty here. I'd be encouraging DB and wife to sell their cars two for one new one with lots of bells and whistles just to present a learning obstacle for him, but to get one new set of keys that she wouldn't share. But I can't make it so. Not all at once. Not without her buy in. PLEASE KEEP PUSHING ME. Although I can't do it as quickly as I would like, and as quickly as it should be done, I appreciate each of you strengthening my resolve. My conversations with brothers (not PWD) now include, "People at the support site say...".
"Has your brother had any neuro-cognitive testing done? This would be the 4–5-hour battery of testing to tease out areas where his cognition and reasoning skills are most impacted. This can be helpful in determining not only the kind of dementia, but where his losses are most profound." No the only cognitive testing was the MMSE. Is this standard? Is this something I can ask for from the neurologist? Are there any key words I can use to look this up and to learn more?
Thank you again. Please keep pushing me in the right direction.
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Housefinch,
Thanks for your input. The logging in with him was just the step on the path to get it so we can take it away and be able to log in for him. Before this weekend I couldn't have logged in for him. Neither could his wife. At one site he had changed his user name to something he intended for a password. He didn't realize it. It took me there with him. He was incapable of calling in to tech support himself, and they would only provide service if it was his voice answering identifying questions (which I had to write down for him). His wife needs access. This will ease that where we can make sure she can get in, "and then close the door behind us." by changing passwords etc.
The advice from you and others is worth way more than 2 cents.
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HB,
I wound up on this site: Neuropsychological Testing: What It Is, Purpose & Procedure (clevelandclinic.org)
That had the following information:
When is neuropsychological testing done?
Healthcare providers, like neurologists and primary care specialists, might want neuropsychological testing if they notice trends or changes such as:
- An unexplained change in personality, like an increase in anxiety or depression, the development of delusions or hallucinations.
- Changes in short-term memory, like asking the same question over and over.
- Difficulty communicating or interacting with others.
- Difficulty speaking or finding words.
- Difficulty drawing or using a map.
- Frequently losing items or getting lost easily.
- New difficulty with understanding or managing bills or finances.
- Poor attention and concentration.
- Poor judgment/decision-making.
- Trouble recognizing familiar people, like close family members and friends.
- Trouble staying organized or completing tasks.
For my DB "Difficulty speaking or finding words", "Poor attention and concentration", "Trouble staying organized or completing tasks", are things I can say I've observed, and/or has been reported as observation by bro (not PWD). Others are likely true but I can't report from personal observation (though there are other things I've described before).
So is this a judgement call by the Neurologist? Does the family ask about/request this?
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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