Re-posting in it’s own thread

Chloe mom · May 18

Hi

So comments in this thread (about anosognosia) are hitting home right now. But I need clarification. At what stage or point do you feel your SO is when you start noticing cognitive issues such as it is hard for them to talk to others, avoiding large groups, saying his brain isn’t working, not able to form sentences, brain fog and can’t remember conversations. Thankfully my DH doesn’t have anosognosia, we know well what the main problem is. But sometimes his brain is on for a number of days and other days he complains about it. I noticed a major decline after a heart attack in Aug of 2022. I guess I am wondering if we are going from stage 4 to stage 5 slowly and this is our new normal. We haven’t gotten a formal diagnosis due to neuro-psych testing’s doctor. We have a mild cognitive impairment diagnosis from 2011 and the last testing a year ago showed deficits in attention/memory and processing speed. They are willing to re-do the testing when he shows significant issues; I think we are getting there faster than I wanted.

Thanks

M1 · May 19

Hi Chloe. I'm struck that he has an MCI diagnosis from13 years ago and is only now progressing- that's described, but still pretty unusual. So many things can contribute to cognitive decline after a heart attack- he could have vascular dementia, but statins also can cloud thinking, as can cardiac bypass if he had surgery.

What would you be looking for with retesting? Confirmation that you're seeing a change? My partner was never interested in pursuing (and didn't tolerate either Aricept or Namenda, both tried empirically). I'm not sure I would pursue it, personally, but if you feel it would help in some other way?

trottingalong · May 19

I’m with M1 in questioning the purpose of retesting. My DH has obviously moved into the next phase. From day one he has always recognized fogginess which turned from occasional to constant. Now he says he just can’t remember things, but in the next moment saying he’s glad he doesn’t have dementia. Seven years ago he was diagnosed MCI with depression. Both he and I see no point in further testing. I know what he has and it would be difficult to put him through testing and could very well cause him to be very stressed.

Chloe mom · May 19

M1 and trotting along

The MCI was caused by brain surgery he had due to a sinus infection. In the 27 years I have been around, his memory has always been spotty. But within last 2 years there has been a much noticeable decline. He heart surgeries have only been for placements of stents.

I really have no need to retest him and he has no interest. It might need to be done thou at some point for added benefits from the VA (Depart of Veteran’s Affairs).

I did find on Tam Cummings DBAT in stage 4 - “can have normal cognition for hours or days; then become quite confused”. We thought it was the B-12 deficiency, but now I see it as a straight up symptom. Fighting with the VA about the Dementia is trying as they want to pawn it off as personality problems. As others have stated and I am encountering, neurologists aren’t much help.

Thanks for the help!

trottingalong · May 19

https://alzconnected.org/discussion/comment/209654#Comment_209654

I’m so sorry. I’ve heard horror stories about dealing with the VA. I hope this all works out. It can be a confusing disease.

M1 · May 19

It sounds like it may be to your practical benefit to let the VA test him. It's always hard with such a big bureaucracy....

ButterflyWings · May 19

@Chloe mom

If you have a good rapport with any of his VA docs (if he has a cardiologist or Primary Care doc they likely want the primary to do it, but it isn;t mandatory. Or even if you have a Dr. from outside the VA - there are 4 tests the VA uses to evaluate a vet for Priority 4 - Catastrophically Disabled status, which dementia qualifies him for.

This disability does not have to be service connected. DH qualified due to a prior Alz diagnosis, but his doc had to complete one of the forms, and he chose the MMSE as it already had been done. Others here have gotten a letter that stated their LO required constant supervision to not be a danger to themselves (wandering or forgetting to take meds) or others (risk of leaving the oven or a candle on, and causing a fire),

The VA is supposed to review and provide a decision within 30 days. It took us 90, after a year of pursuing a totally different avenue on guidance of various different VA staff. They all meant well, just did not have a lot of information about dementias nor the specific benefits a veteran with any of the dementias (or other issues with ADLs and IADLs). Start with the social worker and don't give up. You may have to educate them.

Here is one of the threads from when I was going through this.

https://alzconnected.org/discussion/60996/va-just-designated-dh-as-catastrophically-disabled-priority-4

ButterflyWings · May 19

Here is an explanation: https://www.va.gov/HEALTHBENEFITS/resources/publications/IB10-435_Catastrophically_Disabled_Veterans_08192022.pdf

Here us the actual application: http://file:///C:/Users/vicki/Downloads/VAF%2010-0383%20Catastrophic%20Disability%20Enrollment%20Approval%20Request.pdf

Chloe mom · May 19

https://alzconnected.org/discussion/comment/209661#Comment_209661

Thanks for the information. We have applied twice for the new caregiver program due to seizures and complex PTSD, but were denied both times despite “fitting” the requirements. I think the VA’s biggest problem with us is my husband is only 53 and they don’t want to admit he is young-onset, mid-stage dementia in his files. His 2 neurologists would rather chalk it up do personality problems or depression (and the depression is already in his files). I need to re-find where the VA did a study on seizures leading to dementia for support of what I am saying in preparing for “battle”. I am also considering getting the printable version of one of the basic tests (SLUM, MMSE, MoCA) to have his social worker give to him every 6 months for at least my records.

Thanks again for the information about the Catastrophically Disabled program.

Belle · May 19

@Chloe mom In my personal experience, the VA does not want to admit that a vet has a dementia diagnosis if they are already service connected. Why? Maybe because they would have to pay the caregiver or they would have to pay for nursing home care or because it's terminal and you would later qualify for DIC payments. At least that's been how I feel we've been treated.

DH had a diagnosis of neurocognitive disorder after the VA administered neuropsych testing but the VA neurologist disagreed with the neuropsych and the diagnosis was never entered in DH's record. He's been told he has lupus encephalopathy and memory loss by the VA but those aren't terminal conditions and only the words "memory loss" are in his medical record.

Maybe it's time you talk to an attorney that specializes in VA disability claims? There are ways medications and/or other medical conditions can be linked to dementia as a secondary condition and then his dementia would be service connected and open the door to more services. DH also has been told it could be depression but his MRI's show SVID, he has many other issues that can lead to dementia, and his test scores have decreased in the last 5 years but like your DH he's in his 50's so it's been written off as depression for years.

This has gotten long so here is what we are doing. We are going through private insurance that we also carry to have neuropsych testing done again and if/when we get a dementia diagnosis then I will send that to the VA to have it entered in his record. If they won't put the diagnosis in his record we will retain an attorney (again) to make it happen. I'm ready to keep fighting to get him the services they promise.

concerned_sister · May 19

@Belle, I like your thinking and your practical approach. With my DB we had his first VA blood work this past week, and first appointment with his VA PCP this week. After reading your comments, I'm thinking it might be wise to bring some of the documents from the (private) neurologist and ask they be put in his files.

Belle · May 19

@concerned_sister absolutely bring the documents from other medical providers and ask to have them added to his files. His PCP at the VA has been the best resource to get records added. It’s helpful from a medical perspective that they have all the info. We share VA records with his private insurance providers too. For DH’s last non-VA neurology visit I sent records electronically and hand carried copies to the appointment to make sure they were reviewed.

Belle60 · May 20

https://alzconnected.org/discussion/comment/209654#Comment_209654

I am not sure what your situation is but we were advised to maintain our neurologists outside the VA. We have an assigned PCM with the VA just to access all other resources like caregiver resources and in home care. The social worker for our PCM is the one that sets up all the services. But the order comes from your PCM.

concerned_sister · May 20

https://alzconnected.org/discussion/comment/209731#Comment_209731

I'm glad your comments were so timely. I printed out a set of the documents to take with us Thursday. Prior to your comments, I was more of a mind to let them reach their conclusions independently. Thanks for having me rethink that.

Chloe mom · May 20

@concerned_sister - If you don’t bring previous providers paperwork the VA will 100% miss something. The more “poop” you can throw at the VA wall, the better it should be.

@Belle60 - We have only had access to the VA, so we would have to pay outside providers out of our own pocket. Never knowing whether they would be able to give a better or worse perspective on anything happening with my DH. We had hoped to take advantage over the years of the Mission Act’s Community Care, but this President pulled back funding and the VA is notorious for not paying bills. So the program for some departments is worthless.

Iris L. · May 20

This is my opinion. Professional care for PWDs is nebulous. Doctors know how to attack and treat cancer, infections, trauma and other medical conditions. But there is nothing defined to treat with brain deterioration. So they are at a loss. The more the caregiver can bring to "focus" the direction of where you want to go, the better. Because, they really don't know what to tell you, and they will go off onto tangents. We are so fortunate to have fellow members to guide us!

Iris

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