The Results are in

concerned_sister

The MRI shows deteriation of the brain in the area of memory suggestive Alzheimers. The testing rules out tumor, and stroke. He has prescribed a pill that is to be started as soon as the Rx is received. It is to be taken daily in the evening.

He stated there were two other tests that could be done, 1) the spinal tap to remove fluids to examine for evidence of amyloid protiens, 2) another test involving fluids. Both were quite expensive (and he wasn't recommending them). He wants to see how DB does on the pills.

We discussed my concerns regarding driving. He is contacting DMV to set up a test for DB. Retaining his license will be dependent on the results of the test.

After I hung up, and called DB and his wife and repeated the information.

I learned long ago that getting a dx does not give you a disease, you already had the symptoms, it just names it. So from that point of view this is good news that the results are in and we can proceed accordingly.

AlzWife2023

Good luck! This is exactly how I felt when DH got his diagnosis. We didn’t do the spinal tap either. Now you’ve got your official membership card as caregiver of pw Alzheimer’s. We are here for you. (((Hugs)))

concerned_sister

Thanks AlzWife, but I'm only an associate member. DB's wife will be the care giver, I help where I can. My "job" has been to set up and attend appointments, do research, and now do the other tasks that are more 'mental' in nature (financial consultant, CELA), than hands on.

Iris L.

Good for you on getting this done. Here are some of my thoughts. You're right the dx doesn't give you a disease, it just names it. Apparently the results point to Alzheimer's Disease. Given that there are several current aspects, if it were me, I would think about neurocognitive testing for more confirmation of the diagnosis. This would to give you more documentation that you are dealing with a progressive neurodegenerative disease. These are the concerning aspects:

--younger age, at age 65

--wife with limited English and from a more deferential culture

--having clients, who may have questions about possibly receiving wrong information or poor work on their accounts

--still employed

--still driving. Although many members do rely on a professional driving evaluation, what do you think of LO's driving skills and ability to react quickly to traffic and pedestrians.

--younger brother not totally convinced about the need for changes.

Of course, you don't have to do any more testing, you can go with what you have. You are in charge. If he were 75 and retired, I would probably not do any more. The point of the testing is to exclude a treatable cause.

Is he on Namenda? When I first began Namenda, it gave me insomnia.

As I said, you have accomplished a lot. I hope you and your family can enjoy your weekend.

Iris

concerned_sister

Thanks, Iris. I'll comment on some aspects of the above.

Re Clients: He has disengaged from this.

Still employed: this is the tricky one. Younger brother is in a position to influence how long he stays on payroll. My best case scenario is they (work) put him on medical leave. Youngest approaches life as everything is fine until it isn't. Maybe after the meeting with the CELA (in about 2 weeks) we (youngest and I) can have a strategy meeting re going on medical leave…applying for SSDI. It seems DB needs a strategy to take out some living expense money from savings to cover any period off payroll before SSDI kicks in. Note youngest acknowledges DB is not really contributing anymore.

Re driving: I am concerned with reaction time. This looks like it will be resolved with the Dr contacting DMV and the test. If not, there will need to be a talk with SIL about hiding the keys etc. (My favorite scenario is sell current two vehicles and she get a single new one.)

Issue with the youngest, that again is a tough one.

"I would think about neurocognitive testing for more confirmation..", I went back and re-read that and it triggered a memory of DB saying after he got the dX, he wanted to go to the VA for a second opinion. Maybe they'd do the more comprehensive testing. (Note the local university in an option and there are free studies he might qualify for, but at last discussion he preferred VA.)

I don't know the name of the medication.

concerned_sister

My prior comment sat in draft overnight. I had another thought I was going to add, but I was interrupted.

This morning, I'm the bad guy. It's raining outside. DB invited me to breakfast. We agreed where. I said I'd come pick him up. He said he'd meet me there. I explained my reasons for concern and asked him to please let me drive. He insisted he can legally drive. I noted that's true. But, told him in that case I have to cancel. After explaining my concerns, and then having you drive to meet me in the rain, I'd feel like a hypocrite.

Phoenix1966

@concerned_sister It must have been incredibly hard, but good for you to cancel on the breakfast. perhaps, because you cancelled, he won’t go out.

Regarding your younger brother, is there any way he can come to the CELA meeting as well? Perhaps hearing from the “horse’s mouth” regarding legal and financial issues might help him to really grasp all the ramifications of you LO’s current and upcoming challenges? Of course, it may not be logistically possible(who is watching/supervising your DB during this time) and having several people at one meeting who are not aligned in their thinking may waste very valuable(and expensive) time that might be used more constructively with less in attendance.

Edited to add: I am referring to younger brother who can influence how long DB can remain on payroll. But, after re-reading, it sounds like he is coming to the meeting.

harshedbuzz

@concerned_sister

I agree with Iris that neurocognitive testing could be useful in decision making. dad didn't have the full 2-day testing, but he had enough done that we learned about areas where he was more impaired than we knew. Dad's language skills remained freakishly intact. Even when he lost a word, he was able to deftly come up with a synonym quickly. This made him appear less impaired to people who didn't spend a lot of time with him than he actually was. It also made it easier for mom to cling to her denial that things were as dire as they were.

I don't think it's a good idea to bring a PWD to an initial legal appointment. The notion of "horse's mouth" doesn't apply; if it did, he would be accepting his neurologist's diagnosis instead of asking for a second opinion. LOL, even after we got a second opinion in the form of a geriatric psychiatrist, dad blew it off saying "all the doctors stick together".

You need to be able to speak openly not just about his condition, but also about the logistics of planning for care needs for him while preserving a reasonable lifestyle for his wife now and for her care needs down the line.

HB

Phoenix1966

@harshedbuzz I guess I wasn’t clear. I was trying to suggest to bring the younger brother who can influence how long DB can stay on the payroll to the CELA meeting.

Iris L.

CS, you referred to yourself as the bad guy. I don't think so! You are the good guy for keeping an impaired person off the road, especially on harsh driving conditions. You all became concerned about him, not because of MRI results, but because of his functioning at home and at work. I wonder, has anyone observed his driving in traffic in person? I have a personal experience. I once rode along with my older neighbor to his medical appointment about ten miles away over the freeway. He drove slowly, but okay. At the entrance, he stopped and couldn't decide to turn or go straight, with cars honking behind him. After that, I told him I would be happy to drive him to his appointments. He still drove locally but I told him that he should be home before it got dark. Later, he was diagnosed as having Parkinson's Disease. I already knew he did not have the dexterity to handle a car in traffic. Nevertheless, he was able to pass his driving test and receive an extension for five years at the age of ninety, I still don't know how.

My concern about neurocognitive testing is to confirm his impairments, because the all family does not appear to believe that he is significantly impaired.

Since he is a veteran, there are several benefits available to him. There have been several threads on getting a disability rating, especially on the Spouse/Partner board.

Iris

concerned_sister

https://alzconnected.org/discussion/comment/203941#Comment_203941

Phoenix1966,

He did go out, but I think I've layed down my marker. I can play bad cop again as needed. I'd lose all credibility if I waivered. At least that's how I see it.

You and I both see the pros and cons of youngest brother going to CELA. I see more cons than those mentioned here, just parts of the picture not shared. I think bottom line, the $ for the meeting argues against having him, and I have a lot of credibility. If I say the lawyer said X, there won't be a question of my objectively stating that and not just reporting things that support my point of view. Actually DB will be attending. Although he struggles getting his words out, I see him as still taking information in, and he and his wife must be there (in my opinion). (Uh oh, I scrolled back and saw someone else sharing a different opinion. I'll have to read that post.) Re youngest influencing payroll, I spoke with him a few minutes ago. The business has been consolidating in recent years. There's no immediate need to make a move to put someone new in the position. It will likely turn out however the CELA advises in terms of whether he needs to be off payroll to qualify for SSDI, or can he be on (paid?) leave to qualify for SSDI. We should get some advice soon.

concerned_sister

HB, he communicated he would want a second opinion months ago when we started this journey. There was a debate to go through his PCP or go to VA. He trusts his PCP with a relationship that goes back decades. But he knew he would want a second opinion. That made sense to me in terms of if we got the dx that seemed likely, we would then apply for VA benefits. When talking a couple of weeks ago, he said he'd probably want a couple weeks in between just to absorb it. That time line seems to fall just after we've seen the CELA. I don't want to remind him of it until after we've seen the CELA, I want it to sink in that the MRI showing deterioration is a fact. (I re-read that and remember the adage about a broken reasoner.) The dx could be subjective and you could get a second opinion there. But I think the CELA is urgent for planning purposes and no postponing that for a second opinion.

Re your dad and his ability to find synonyms - I'm a little surprised it isn't more like that with DB. He stops mid sentence. Yesterday when talking about some figures he sent me, when I asked a question, he started and then started saying, "Uh, Uh, Uh", xxxxxxxxxx you answer (x = the person standing next to him). It would not have shocked me if he had said something along the line of his word center, not just memory showed deteriation.

HB, I understand your points about talking about his care, but as of today he hasn't signed those forms so as I understand it such discussions need to happen now so he can put his directives in place.

concerned_sister

Again, thank you both for helping me think this through. It would have been nice if the Neurologist had said something like, call my office Monday to set up an appointment so we can discuss the implications and prognosis. He did give me the option of asking questions, but I was afraid of forgetting what had already been said and repeating it to DB and his wife.

concerned_sister

Iris,

Thank you for the support. "I wonder, has anyone observed his driving in traffic in person?" Youngest let him drive one day last week when they carpooled. (insert rolling eyes) He said he did ok except when they entered the parking structure. He seemed to have difficulty parking. For a number of months he has backed in to his parking space so it's easier pulling out. He parked head in with younger in the car. Later he went out to repark backing in.

concerned_sister

Forgive my going on. When he speaks, he doesn't (usually) go to phrases like thing-a-ma-jig or other substitutions, he just stops mid sentence. That processing stop is what concerns me about his decision making in a driving situation.

Iris L.

A story: Many years ago the supermarket manager called a shopper to the front. Apparently an elder was attempting to park and ran into her parked car. Since then I decided to avoid parking in the front, I don't mind parking in the back where there are fewer cars.

Iris

harshedbuzz

@Phoenix1966 Duh. That makes perfect sense now. Reading fail.

I agree, the CELA could bring strategies to the table that would be mutually beneficial to both the firm (in terms of reducing liability and protecting reputation) and DB (putting an exit plan in place to maximize benefits).

@concerned_sister, I suspect you are being deliberately vague in terms of describing the nature of his employment in a bid for anonymity. A one point there was a mention of a "family enterprise" and a culture of "rewarding a long-term employee". If this is a smaller shared/individually owned family business, it could get complicated.

I think it makes total sense to have a second opinion in this situation. Given that it can take some time to get seen, I would take steps to schedule the VA evaluation immediately if that is your preferred choice. It's highly unlikely they would schedule before the CELA appointment. It's hard to know how aligned the results of the two evaluations will be. Some neurologists routinely give an MCI dx or withhold an official diagnosis until an interval of time (6-12 months) passed with measurable losses. That said, if the diagnostic process doesn't start for another 4-6 months and takes 2-4 months to complete, you would expect to see some disease progression in terms of skill loss and behaviors.

Good luck with your appointments.

HB

concerned_sister

Thank you Iris, and H.B. for your input.

I like the strategy of starting to schedule appointments sooner rather than later, per the baked in delays. I am thinking I should call my DAV contact. As posted about previously, I'm aware that there are provisions for a veteran diagnosed with a "catastrophic disability". Alzheimers would fit that. The wording on the phone (with the neurologist) was very precise as to the MRI findings are "suggestive of Alzheimers". When I used the phrase possibly Alzheimers he was quick to correct me. He also would not say he has a dx of Alzheimers. I don't know where that puts us in terms of VA benefits, and it's probably wise to get a better understanding of that before requesting more tests. I'm doubtful his insurance would cover this, and it would be nice if it turns out that the VA would cover additional testing.

concerned_sister

FYI, I had a similar line of thinking on a separate discussion, but I'll leave this here as this is more up to date. I just used the live chat feature here, and this is the exchange.

Reason: Do you have a liason with the DAV (Disabled American Veterans) that might provide guidance for a veteran where his MRI "is suggestive of Alzheimers"?

Thanks for contacting the Alzheimer’s Association. We're glad you have reached out to us, and will assist you in any way that we can. Please give me a moment, while I read your request. 

We don't have a liason. Alzheimer's is determined by either a PET scan or a spinal puncture. Have you been working with the VA up to this point? 

Not yet, I'm inquiring on behalf of my brother, whose first preferance was to go to his PCP who referred him to a neurologist.

The neurologist contacted us friday with the MRI results.

I've been in contact with DAV, and they indicated a letter from the doctor indicating that his military service was 'as likely as not' for his disability.

Here at this site I've learned there was a law withing recent years that would cover a veteran with a 'catastrophic diagnosis'. I need to get from here to there.

The VA may cover services and treatments for Alzheimer's. It would be best to reach out to them directly. I can get you a phone number to their benefits line if you don't already have it.  

I understand that the DAV would be our advocate with the VA. I'm just looking for "the magic words" to put in my correspondence that accurately describes where we are with the diagnosis and would likely have them help pick up costs going forward.

I understand. A good next step may be calling the benefits line and ask questions about his coverage. What does he qualify for, for example.  

Thanks. I was afraid it was chicken or egg, what he qualifies for is dependent on his diagnosis re "suggestive of Alzheimers".

Sounds like more testing is needed. Which the VA may cover costs of.  

Thanks.

I would like to give you a link to a page we have about testing.  

One moment.  

ok

Evaluating Memory and Thinking Problems: What to Expect 

This can help give you an idea of what might come next.  

OK, I'll click that now, unless there is more you'd like to suggest. https://www.alz.org/evaluating-memory/thinking/

jfkoc

Alzheimer's is determined by either a PET scan or a spinal puncture.

Perhaps I am reading this out of context but the sentence is simply not true.

concerned_sister

jfkoc,

Thanks for your input. I'm pretty new to this journey. I was under the impression these things were additive, and none of the tests could stand alone. I guess I need to understand what the VA would use in their system in order to generate a diagnosis that would meeting their criteria to qualify for benefits. DB is willing to do more tests as a "second opinion". I just hope the VA could cover costs of additional testing. It's as if I'm on a scavenger hunt, and instead of the "thing" I'm looking for, I just keep finding more questions to ask.

harshedbuzz

https://alzconnected.org/discussion/comment/204111#Comment_204111

Thinking around this is being re-evaluated since our LOs were diagnosed.

https://www.nytimes.com/2024/03/04/health/alzheimers-amyloid-diagnosis.html?unlocked_article_code=1.hE0.T2pa.dwcaKE-IUme9&smid=url-share

Phoenix1966

@harshedbuzz Thanks for that link.

concerned_sister

Thank you, HB, I'll have to read that article.

I can't remember who among us (perhaps more than one) has mentioned they love to make lists and work things off. To put the following in context, my older brother lost his wife suddenly a couple of years ago. Along with the emotional struggle, he had a logistical struggle finding all the information only she knew about thier accounts and running their home etc. He became a big advocate for a NOK Box (NOK=Next of Kin). This is an advertised product, sold on line. It has a structure for identifying the information you need to have on hand to logistically ease through a sudden loss. Though this disease is known as the long goodbye, I think the principles are the same. When we were starting this journey for DB, I grabbed my spreadsheet where I had digitized the structure from NOK Box. I added a 'checklist' page to help put this information gathering into steps, and adding things as necessary, such as steps for safety measures in the home. Well now that we're here, I'm looking what I have, and I'll modify it per my learning over these months. I'll post what I have in case it's of value to others, or if anyone would like to add suggestions. Sorry the color coding of the original won't be brought over.

This page is created to assist a family member with issues of a failing memory or dementia diagnosis. This is to be completed jointly by the primary person and designated assistant.
LastPass - Make sure to share password with trusted family member. (See sheet 1, category 9)
LastPass - Make sure to update with any passwords currently existing outside of this vault
Bank Accounts: update spreadsheet with all account numbers, add co-owners or designate POA
Bank Accounts: Document which bills are on autopay from which accounts (including annual renewals)
Bank Accounts: Document any recurring bills or annual renewals that are not on autopay
Bank Accounts: Close any accounts not currently serving a purpose. Wind down any business accounts.
Bill Pay and Budgeting: Turn this over to other family members or assitants
Debts: document Auto Loan if in existance
Debts: document each credit card name, account number and current balance
Debts: document any designated users and add as necessary to assist you going forward
Debts: closing credit card accounts can affect your credit score. Pay off accounts, and designate as few as possible for continued use and treat others as dormant.
Vehicles: Create plan for putting in another name or selling per suspension of DMV privileges
Schwab IRA or other investments: make sure beneficiary is designated; make sure to revise two-step verification so that designated assistant can access and monitor or transact on your behalf.
Income: Apply or make plans to apply for Social Security Disability Income
Income: Apply or make plans to apply for California Disability Income
Income: Apply or make plans to apply for Social Security Pension Income
Income: Apply or make plans for future IRA income withdrawls
Income: Research additional resources available per dementia diagnosis
Income: Set up a fee for service appointment with a financial planner in preperation for transition at time of disability retirement
Primary Residence: Plan for putting in a living trust if desired
Primary Residence: Safety proof and simplify the home, remove firearms or other items that could create a danger.
Primary Residence: Make plans for hiring out Maintenance as needed
Primary Residence: Discuss future options for moving to an assisted living community or other long term care arrangements
Communities: Consider joining AARP if not already a member
Communities: Look in to the Alzheimers Association for dementia support and education
Communities: Seek out other support networks to assist with the transitions at this time of life

concerned_sister

I'll add, that these were the primary categories for gathering information:

"Primary Residence1"

Vehicles2

Bank Accounts3

"Insurance Policies4"

"Investment Accounts5"

Debt6

Income7

Assets8

Family &Friends9

"Education& Career10"

"Medical Records11"

"Communities & Online Accounts12"

Legal&Tax13

"Estate Documents14"

(these may have been slightly adapted from original source)

Iris L.

HB, thank you for posting that article. There is a lot of food for thought. Personally, I don't see how amyloid in the blood correlates to overload of amyloid in the brain. Indeed, further research and correlation is needed.

CS, thank you for posting about the NOK Box info.

Regarding contacting the VA. DAV is a private organization. It seems to me that many members have gotten diagnosed privately, then contacted the VA for care. There are many threads regarding the VA. I suggest that you read a few and you will get information and tips from members who have had direct contact about how they approached the VA and got a rating.

Technically, the neurologist is correct, the results are suggestive of Alzheimer's Disease. This is because until now or recently, according to HB's article, the only way to be absolutely sure was after an autopsy or after a brain biopsy. But most doctors will make a working diagnosis based on what results are available. That is why I had suggested detailed neurocognitive testing to determine his actual brain deficits, to provide more documentation.

Iris

concerned_sister

HB,

Thank you again for the link to the article. Here's my take away, though this certainly isn't my area of expertise. I think it may have been a second source that empasized the difference between having a disease and an illness. From that source it seems the working definition was you had a disease when you have the biomarkers, but you have the illness when the symptoms are present. From the article it seems the biomarkers of the disease are present even in folks that do not develop the symptoms.

I remembered here on the board someone using the phrase the "gold standard of diagnosis". I used the microsoft AI product using that phrase for Alzheimers. That lead me to a link to the following.

Home » News & Events » NIH Research Matters

https://www.nih.gov/news-events/nih-research-matters/research-context-diagnosing-dementia

January 30, 2024

Research in Context: Diagnosing dementia

(excerpts)

“There’s really consistent evidence that the process of Alzheimer’s disease in the brain begins at least a decade before symptoms appear—maybe even two decades,” explains Dr. Reisa Sperling, an Alzheimer’s disease researcher at Harvard Medical School. …

…For example, until fairly recently, Alzheimer’s disease could only be confirmed after death. Characteristic damage to the brain could be seen during an autopsy. This damage includes abnormal clumps, called plaques, of a protein called amyloid-beta. It also involves bundles of fibers, or tangles, formed by another protein called tau….

…For Alzheimer’s disease, a breakthrough came with positron emission tomography, or PET scans. This imaging technique could pinpoint the buildup of amyloid-beta in the brain. “That’s currently the gold standard for Alzheimer’s diagnosis,” Weiner notes.

- -

Forgive me if the above had been posted previously. With the source being NIH, and the info being current as of Jan 2024, it seems the PET Scan is the test that should be pushed for. What are your thoughts?

EDITED TO INCLUDE THE RESULTS OF ANOTHER INQUIRY: Does insurance generally cover a PET scan to diagnois Alzheimer's?

Medicare, the government’s insurance program for seniors, now covers a specialized form of brain scan called PET (positron emission tomography) to aid in the early diagnosis of Alzheimer’s disease. This procedure may help doctors make a diagnosis of Alzheimer’s in some people in the early stages of memory loss1. The coverage specifically includes brain amyloid PET imaging, which is valuable for diagnosing Alzheimer’s2. It’s important to note that while Medicare covers this, other private insurance policies may have varying coverage policies. If you have private insurance, I recommend checking with your specific insurance provider to determine whether they cover PET scans for Alzheimer’s diagnosis

Iris,

Thanks for your advice to go back and read the experience of other's here working directly with the VA. My older brother who has a friend who has worked through the DAV and has had a good experience. We have had family members who have had bad experiences with the VA (step-dad's kidney cancer being misdiagnosed for years, FIL not always getting the level of care deemed appropriate by the family). The idea of an organization with experience advocating to the VA sounded good to me. Brother's point was not to reinvent the wheel since this group knew the in's and out's of dealing with the VA. I'll go do some reading on the experience of members here. Though it's starting to echo in my mind that experience (with the VA) can vary by location. I hope there are others from my region who have posted.

Iris L.

I'm not saying yay or nay about DAV, but IMO, the members here are the gold standard for veteran's Alzheimer's benefits. I can't say enough about drawing upon the experiences of our members. 🙂

Iris

concerned_sister

I've been clicking around, from a VA site, there was an article about diagnosis, with a click through to a study offering free PET Scan and blood tests etc. DB agreed. We'll see if he's accepted. My fingers did the walking, and we did the first few sections of the sign up with me asking him over the phone. We'll get together in person for him to be the one keying on certain memory tests that require him listening to what they provide.

https://adni.loni.usc.edu/about/

concerned_sister

https://alzconnected.org/discussion/comment/203884#Comment_203884

His rx was filled he's on:

COMMON BRAND(S): ARICEPT
GENERIC NAME(S): DONEPEZIL

Re the cognitive testing, if it were up to me, we'd be there in a heartbeat. I'm at a disadvantage not knowing for sure what his insurance will cover. I spoke with the neurologist office this morning and set up an appointment for the end of the month. That would be a good opportunity to ask about it.

concerned_sister

https://alzconnected.org/discussion/comment/204217#Comment_204217

Iris,

Are there any search criteria you'd suggest to find these? I had gone over to the AA site and found a subset for veterans that lead me to clicking through to the potential free PET scan. But, I need to search here at ALZconnected. Thanks in advance for any suggestion you may have.