New Here - Looking for help for brother
Last week was the EEG and this week is the MRI. I anticipate we'll have it in writing when they review the results with us. His wife has english as a second language, so I'm the designated family member to go with him to appointments and work with DAV to request veteran's benefits on his behalf.
Though I have POA specifically to work with the DAV on his behalf, we said he'd wait until after the MRI to fill out the durable power of attorney, health care directives and other such forms.
With that as background, here's what brings me to posting. I understand once we have a diagnosis, we can submit a claim to the DAV who will work on our behalf with the VA. I saved the following information from a discussion I read here. This is from an email I shared with our group of siblings:
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I think I hit paydirt while reading through the ALZ support website.
https://alzconnected.org/discussion/68195/preparing-for-in-home-care
The above takes you to the start of a conversation with embedded links to more helpful information. I'll call out a few things I learned.
Ask about Catastrophic Disability status. It increases your VA LO's priority status unless they have a higher priority service connected disability. With a dementia diagnosis, approval is automatic and applications are supposed to be approved within 30 days (it took 90 for us).
Catastrophic disability status provides automatic home health aide and respite care hours at the maximum level.
Here are some prior posts about this. https://alzconnected.org/search?domain=all_content&query=Catastrophically%20Disabled&scope=site&source=community
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I hope there is someone knowledgable/experienced that can help me.
Is there more context to it that I realized? Do I mereley need a letter stating (a) the facts surrounding his active duty military service (engineer on a nuclear submarine tasked with repairs to the reactor) and (b) the doctor stating he now has the "Catastrophic Disability" of dementia?
Earlier correspondence I had with DAV suggest I needed a nexus letter connecting the two.
Thanks in advance for any help you can give.
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I have no answers but the same questions. I was told by VA PCP that HWD is not low enough to qualify for catastrophic disability for Alzheimer's. A VA Geri-psych told me this month that qualifying for catastrophic disability with Alzheimer's had to be connected to his service where he had exposure to areas or jobs with known toxins. I think you have to find a person that knows what's what. So far, I haven't found that person.
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ThisLife,
Thank you for taking the time to respond. I'm not yet familiar with "HWD". On the Tam-Cummings scale my brother is in stage 4 (this is a consensus of myself and other siblings). DAV had sent me a sample of a "Nexus" letter. They suggested we could use it as a sample for the Dr to prepare saying the dementia is "as likely as not" caused by his service. In my brother's discharge papers it states he was eposed to "ionizing radiation" in his ocuppation working on reactor repairs on a nuclear submarine. I used the equivalent of chatgpt through microsoft but the answers I got indicated there was suspicion of a connection and more study is needed. I hope someone can come along and say that per the PACT ACT that was passed in 2022 that the diagnosis is enough and that the nexus does not have to be proven. I re-read your response, and your experience with the VA psych was within the last month, so maybe my hopes are unrealistic.
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@concerned_sister @ThisLife Cat. Dis. does not have to be service connected. A dementia diagnosis makes your LO automatically qualify. Application to the VA is supposed to be acted upon within 30 days. This makes certain VA Health benefits possible.
Note, however, this classification DOES NOT automatically qualify a vet for Aid and Attendance. That depends on their service dates, and whether deployed in a combat zone or not. We spent over a year getting through the maze of offices, tasks, and personnel who did not know what they were talking about unfortunately. And eventually did get DH's Cat. Dis. status confirmed. But he is not eligible for the Aid & Attendance so no pension and no spouse caregiver's stipend for little old me.
But we do have the heath care benefits of no co-pays for his meds, home delivery for the same, and HHA support. These have been huge. Go for it. If your VA Social Worker does not know anything about this categorization (they should but ours did not) - then a VSO can help.
Search Catastrophically Disabled in this forum and you will find lots of threads from those of us who got it done.
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Thank you Butterfly wings. That's very encouraging. I imagine I'll be walking through that maze in the very near future. Looks like we need to get the CELA on board to make sure he manages his assets properly for the 5 year look back. We'll need advise on SSDI...even if he could hold on at work, is it better to just take a medical retirement, how ill that affect his benefits. And then I need to work with DAV (disabled american veterans) for what he qualifies for through that system. (For lack of a better way of putting it, think of his workplace as a family business, where the owner wants to reward his loyalty over the years.)
I'm so glad I've been reading here the last few months. I have an idea of the tasks ahead, though I'll need to learn the steps to complete each one.
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concerned_sister and ButterflyWings: Thank you for the input. I've been getting mixed info from VA people. I think some of them are confusing the Pact Act with the Cat Dis category. My husband served during several qualifying periods and is retired Air Force. He will qualify for Aid and Attendance after LTC insurance is depleted. The VA soc worker didn't know anything about Cat Dis nor did the VSO I had an appointment with. Since Husband with Demetia (HWD) is continuing to have behaviors in MC my priority will have to be the application (massive) to get on the waiting list for the state VA facility which has a section for dementia, but the waiting list is lengthy. I need to develop options in case he gets evicted again. Then I'll check with a different VSO that might actually know something. I feel like I'm playing catch up all the time and losing ground.
Best wishes to both of you.
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Re: medical retirement. Does your husband have short term or long term disability through work. It would be catastrophic if he were terminated. Best to go out on disability. Consult with your elder attorney soonest, like yesterday.
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ThisLife, sorry you're not getting straight forward reliable answers. I'll come back and leave an update here once we start the process, which I expect is days away. Sorry it looks like you'll have to find a new placement soon. I understand getting a bed in a veterans facility is difficult per ratio of beds to veterans.
Marta,
Thanks for your interest. ThisLife was speaking of her husband in terms of retired Air Force. In my case it's a brother. He had an honorable discharge after about 8 years of service. Currently he's working at what can best be described as a family business. Earlier today I was talking to a friend I met through my brother. She was of the understanding that he can not be fired when already showing outward signs of disability at work.
Tonight I drove my brother and his wife to the MRI. While he was inside, I had the opportunity to cover many things with my SIL out of his earshot. Discussed the need to engage an CELA to talk through various scenarios and the best way to handle this. She's in agreement and definitely wants me there with them at the appointment. I told her I picked up the business cards earlier this week. She asked me to go over it with my brother after he talks with his docs about the results of his recent tests.
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In case this is of help to others, here's what I found when using Microsoft Co-pilot (similar to chatgpt).
How does a veteran qualify for coverage with a "Catastrophic Disability"?
Copilot:
A veteran qualifies for coverage with a “Catastrophic Disability” based on specific criteria set by the Department of Veterans Affairs (VA). Here are the key points:
- Definition of Catastrophically Disabled:Veterans are considered Catastrophically Disabled when they have a severely disabling injury, disorder, or disease that permanently compromises their ability to carry out the activities of daily living.
- The disability must be of such a degree that the veteran requires:Personal or mechanical assistance to leave home or bed.
- Constant supervision to avoid physical harm to themselves or others.
- Priority Group Placement:Veterans determined to be Catastrophically Disabled are placed into Priority Group 4 unless they are eligible for a higher priority group placement based on other criteria:Being a compensable service-connected veteran.
- Being a former Prisoner of War.
- Being a recipient of the Medal of Honor or Purple Heart.
- Exemption from Copays:As of May 5, 2010, the Caregiver and Veterans Omnibus Health Services Act of 2011 provides an exemption for Catastrophically Disabled Veterans:They are exempt from inpatient, outpatient, and prescription copays.
- They are also exempt from copayments related to certain non-institutional extended care services.
- Copayments for other extended care services (such as nursing home care) still apply.
- Application Process:To apply for VA benefits under the Catastrophically Disabled category, a veteran must:Submit an application to the VA.
- Provide medical evidence of the disability.
- Undergo a comprehensive examination to determine the severity and extent of the disability and subsequent eligibility for benefits12.
If you need further assistance or have specific questions, consider reaching out to your local VA health care facility or calling 1-877-222-VETS (8387). You can also visit the VA health eligibility website at www.va.gov/healtheligibility.
0 - Definition of Catastrophically Disabled:Veterans are considered Catastrophically Disabled when they have a severely disabling injury, disorder, or disease that permanently compromises their ability to carry out the activities of daily living.
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My interpretation is that when using the Tam Cummings stages of disability, stage 4 would be a bit soon to apply. The above seems to be applicable once the PWD can no longer be left alone.
Does that match your experience?
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Forgive the following for being redundant. Per advice given here, I was looking through old posts with the keyword "Catastrophic". There was one post that led me to the same information, but it's framed slightly differently and it clicked this time.
JJAz
January 2022
...There are TWO different routes to explore with the VA:
EVERY vet can qualify as a 'Catastrophically Disabled Veteran' once their dementia symptoms get to stage 6 or 7. This is regardless of income or war time service. This requires becoming classified as PRIORITY GROUP 4 in the VA system. See the link to the thread below for details. Nursing care is available for $98/day or less.
Aid & Attendance (A&A) requires war time service and has asset limits and income limits. This is the program that is familiar to service officers who will assist you in your application. They are not typically familiar with Priority Group 4 or the benefits available.
Using Microsoft Copilot:Yes, it is true that every veteran can qualify as a ‘Catastrophically Disabled Veteran’ once their dementia symptoms reach stage 6 or 7. This qualification is independent of income or war time service. Let me provide more details:
- Catastrophically Disabled Veterans:
- Veterans are considered catastrophically disabled when they have a severely disabling injury, disorder, or disease that permanently compromises their ability to carry out the activities of daily living.
- The disability must be of such a degree that the veteran requires personal or mechanical assistance to leave home or bed, or they need constant supervision to avoid physical harm to themselves or others1.
- This determination is made by a VA clinician based on sufficient medical documentation without further evaluation.
- Priority Group Placement:
- Veterans determined to be catastrophically disabled are placed into Priority Group 4 for VA health care.
- However, if they meet other eligibility criteria (such as being a compensable service-connected veteran, a former prisoner of war, or a Medal of Honor or Purple Heart recipient), they may be eligible for a higher priority group placement1.
- Exemption from Copayments:
- Catastrophically disabled veterans are exempt from inpatient, outpatient, and prescription copays.
- They are also exempt from copayments related to non-institutional services such as respite care, geriatric evaluation, adult day health care, homemaker/home health aide, and more123.
- Dementia Care:
Remember that VA policies aim to support veterans with disabilities, regardless of their income or wartime service1.
Learn more blob:https://edgeservices.bing.com/2c4d9cad-6ec6-4f33-b858-51e373c1c6e1 blob:https://edgeservices.bing.com/2c4d9cad-6ec6-4f33-b858-51e373c1c6e1 blob:https://edgeservices.bing.com/2c4d9cad-6ec6-4f33-b858-51e373c1c6e1 blob:https://edgeservices.bing.com/2c4d9cad-6ec6-4f33-b858-51e373c1c6e1 blob:https://edgeservices.bing.com/be6037ba-c39a-4a62-b01c-7d25e2e909fe+1 more
0 - Catastrophically Disabled Veterans:
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Thanks for posting.
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The advice for me to look for "catastrophic" was gold. I'm cutting and pasteing the relevant parts in to an email for DB, SIL and Siblings. For the benefit of others, I'll share somemore that I found so others will see it here together.
star26
January 2021...My Dad was also a veteran that did not serve during wartime and we used a ton of VA benefits to care for him at home. I was very happy with the VA. The weekly care hours at home that they paid for increased as his needs increased. Our social worker assessed him by asking me questions about his abilities and we kept updating this as he progressed. They paid about $3000 per month towards care aides needed for supervision, mental stimulation, fall prevention, meal prep, and help with hygiene. I hired the aides myself (the VA took care of taxes and all the paperwork) and paid them $18-$25/hour. They also paid for daycare at a facility because it was cost effective ($60-$70 per day) and satisfied his goals of mental and physical stimulation and preventing falls through supervision. They also paid for 30 days of facility care for respite purposes per calendar year. The facility charged $365/day. I would schedule it all at once in December and January so I could have a solid 60 day block of time off, but you can also break it down in 10 day increments. When traveling to doctor's appointments became difficult (needed a cane) all medical care was provided in his home, including a geriatric psychiatrist. The occupational therapist also visited and ordered a ton of equipment to modify the home for him including a custom stairlift that cost over $10,000 because she thought he'd need it in the future. Like manuzito, I could not be more pleased with the good care and attention my Dad received from the VA. It's a breath of fresh air when medical personnel place the patient's wellbeing as their top and only priority.
(continued later from above)
The benefits we're talking about would come through the Veterans Health Care system.Aide and Attendance is administered through the Veterans Benefits Administration.I would contact the nearest Veterans Health Care facility and talk to a social worker. Your LO would need to be enrolled in the Veterans Health Care system, I think, in order to get these other benefits.
(another related response)
I would start by getting her VA doctor to fill out this form. That will put her in Priority Group 4. Her VA social worker should be able to help you with this. It is not based on service connected disability or income. This designation as catastrophically disabled opens the door to future services such as adult day care and home care. Look at the section (about half way down the form) is where it addresses ADLs and cognitive issues.
Sadly, many VA doctors and social workers are unaware of this form so you have to advocate for these services.
The daycare or any service provider must have a contract with the VA. I used the daycare services for my husband (Vietnam vet). I paid $15 a day instead of $60. He died in 2017 but loved the daycare. They nicknamed him captain.
https://helpdesk.vetsfirst.org/index.php?pg=file&from=2&id=562
https://www.va.gov/GERIATRICS/pages/Alzheimers_and_Dementia_Care.asp
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Info about VA priority groups. Pay special attention to priority group #4.
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SDianeL
September 2023...I was approved for VA Caregiver Support. I filled out the form online and they called and we were approved in a few months. Did you file the claim and were denied? The key to filing claims with the VA is to give complete info about behavior. So make a note about everything your DH can't do with assistance. Shower, eat, pay bills, grocery shop, drive, etc. That's how they determine what support you need. There are different tiers of Caregiver Support at the VA. I'm in the middle tier with 720 hours respite care and Caregiver stipend. When my DH needs more care, they will increase the support or help with a MC facility. There is also a Catastrophic Disability category. Based on a VA clinical decision, Veterans are considered to be Catastrophically Disabled when they have a severely disabling injury, disorder or disease that permanently compromises their ability to carry out the activities of daily living.
4 things you can try: 1. Every veteran is assigned a Social Worker at their VA facility. Find out who that is and call them. 2. Call the Patient Advocate. 3. Find your County Veteran Service Office (VSO) who is paid by the County and ask for their help. 4. See if you can find the Caregiver Support phone number at your VA facility and call them if you haven't been in touch with them already.
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Back in March I wrote, "ThisLife, sorry you're not getting straight forward reliable answers. I'll come back and leave an update here once we start the process, which I expect is days away." The days away was delayed as we worked to connect with a CELA and to get DB's financial life in order. As quoted above from another member:
I would contact the nearest Veterans Health Care facility and talk to a social worker. Your LO would need to be enrolled in the Veterans Health Care system, I think, in order to get these other benefits.
Our task yesterday was to get DB into the Veterans Health Care System. We checked in, and then were taken back for a private interview. In addition to reviewing DB's DD12 (I think that's the form documenting his time in the service) questions were asked of DB and SIL of their combined income last year, and excessive amounts spent on medical and dental care. The gentleman asking questions had a very friendly outgoing personality and was very service oriented. During the conversation DB was asked about service related disabilities. I mentioned DB recently being diagnosed with dementia, but we have yet to establish it as service related. Paraphrasing, he said let someone else figure that out, just list every issue you're dealing with. He looked at brother with glasses on and said to list vision issues, he asked him if he gets anxious when he stands in lines (DB said yes), he can claim anxiety, a mental health issue. He said list everything applicable as that will affect disability percentage. DB was given a form to fill out and some handout materials. DB was told his initial assessment is priority group 5, he discussed the copay amounts for medical services (these were low, $50 or less for each of the various examples, some down around $15) he also discussed the copay amounts for tier 1, 2 or 3 perscriptions. He said after he completes the forms and his level of disability is further defined, these costs could go down or disappear. They took his photo and issued him his ID for the healthcare system. (He said something about later in the process he may be issued a new ID with some designation on it). He explained his ID can allow him access to the commissary, and free enterance to National Parks etc. We went to Long Beach, CA (L.A. County) as we were instructed that this was the hub that dealt with our portion of southern California. He gave us info on a health care facility that was a short drive from his home (Orange County, CA), and business office that was near his work. My notes were left with DB and his paperwork. I believe the office near his work is where we go to connect with the VA social worker. We'll go there tomorrow morning.
Later when reviewing this with older brother, who has a friend that used to work in the VA system on disability assessment, we were encouraged not to be shy in listing out issues. He reminded us to document that he had been self employed as an IT consultant and had to close down his business due to his disability. He encouraged us to document his difficulty with Oral Communication, difficulty with written communication. Brother encouraged being specific about such issues. The light bulb went on that I can use some of the wording from the Tam-Cummings assesment, memory deficits, difficulty with word finding, issues with skipping steps in tasks, difficulty with arithmetic, difficulty with complex tasks, etc.
I'll update after we meet with the social worker.
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concerned_sister: I appreciate the updates you are leaving. I think they are especially helpful for Veterans who are not retirees, but how to proceed doe apply to all Veterans. I was able to start working with a VA social worker when my DH was hospitalized in VA psych unit. DH passed 6 weeks after being released. I pursued getting a determination through the VA medical providers he was seeing. They know absolutely nothing about disability issues. Should have started with a social worker. Medical staff kept telling he was "not that bad." I think the biggest take away is to detail each and everything the LO is no longer able to do whether it is VA or any other medical personnel.
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Here is the VA book on all of the conditions that can be rated as service connected. Just click through each section and then into each condition listed. This might give you a head start on knowing what might help up his disability percentage:
Also don't forget there are secondary conditions that may also count. Secondary conditions are considered after the primary condition is linked to service. For example, DH has an autoimmune disease that was service connected but he also has about 20 other conditions caused by the autoimmune disease and/or medication side effects to the disease. That is how he got over 100% rated.
This website just lists everything without explanation (sorry if there are popups):
Just a sidenote…the form you needed to provide to the VA was DD2214. That's the form number that vets have to show their time in service. Good luck!
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Belle and ThisLife,
Thank you both for responding with valuable input. And thanks for catching the form number correction. It didn't look right to me, but I was winding down from the day and didn't take the time to look it up.
Thislife, how are you getting along since the passing of your DH? I imagine the loss is not easy, but there is some comfort in knowing he's no longer suffering. I am so glad we got the advice to seek out a VA Social worker. We'll work on that tomorrow. Thank you for reinforcing the advice to list out his functional disabilities. I believe there is a natural tendency to want to minimize, but knowing this can affect the finacial well being of their family is motivation to be thorough.
Belle, thank you for including the link. I may have seen something similar when I was dealing with the inital tidal wave of information. I'll look through that today, now that I'm in a better position to absorb it and think through how it may help in our documentation. I wish I had take extra copies of the handouts that I could have brought home with me, rather than leaving it all with DB.
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For future reference, I'm including the body of an email I recieved a few weeks back from the DAV while I was under the impression I should go through them. This is more information on the process for anyone that comes accross this discussion. I've omitted the introductory paragraphs specific to my DB. (Note at this point I'll continue to work with the VA directly.)
For DAV to help with pursuing benefits through the Department of Veterans Affairs (VA), it is essential to begin preparing the claim before submission. For the most part, for a claim to be successful we must provide evidence and documentation that supports a:
- Current condition, illness, or disability
- In-service disability, injury, or incident
- A medical link between the current disability and the in-service event, injury, or illness. Or, if a disability or injury existed before military service, a medical link explaining the pre-service disability was aggravated by active military service beyond its natural progression
The following are the types of evidence typically used along with a brief explanation of how they help. For more information, please watch “Seven Ways to Establish Service Connection” and “Who Should File a VA Claim?” by clicking on their hyperlinks.
- Any Military Service Records such as DD Form 214s, and service medical or personnel records. These are helpful as they may show a record of an event, a disability, or the onset of symptoms during service.
- Any private medical and Vet Center records from the date of military discharge to the present. These are helpful as they may show evidence of treatment, the diagnosed disability, and its severity. If not able to obtain, a VA Form 21-4142 must be completed for each health facility. Upon receipt, the VA will also request the records from the health facility.
- A personal statement explaining how the condition is related to active military service and having an effect currently. It should include as much information as possible on the incident in the military, such as the “five W’s”: who was involved, what happened, where it happened, when it happened, and why it happened (if known). Preferably, the statement should be typed.
- Buddy statements from family members, friends, or fellow service members who can corroborate the in-service event or injury. These can be extremely useful in establishing the chronicity of the condition claimed.
- Any photographs; police reports; media or unit articles and/or magazines; and flight, deck, or base logs corroborating the in-service disability, injury, or incident.
- Medical Opinion from Qualified Health Professional(s). Medical opinions can establish a link between the current disability and it was caused or made worse by their military service. Medical opinions should show the date of examination or treatment and should furnish symptoms and findings as well as diagnosis.
Upon collecting all supporting documentation and evidence, please complete the attached VA Form 21-526ez and if needed, the VA Form 21-4142 for each health facility. All VA forms can also be retrieved by searching “here”. Once completed, if a small size (20 Mb or less) please scan and email back. If larger than 20 Mb, multiple emails can be sent. If preferred, all can be returned by mail or in-person instead of email to the address listed below.
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Just a sidenote…the form you needed to provide to the VA was DD2214.
Correction: That's DD 214.
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Thank you. Luckily we requested that a few months back, so we have a copy. I now need to take a deep breath and start working on the 21-526EZ on behalf of my DB. Wish me luck.
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oops, thanks for catching that. Pre-coffee me shouldn’t respond to posts!
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Re the comment above re veterans who are not retirees. The point to ponder here is captured in this email to older brother. Edited for privacy.
This is from a publication from the VA. As discussed yesterday we can record that xxxxx lost income from his self-employment as an IT consultant. I found out this morning that xxxxx's work for the (private businessman) could range between 17,000 to 25,000 a year. I don't (yet) have visibility into his other lost income, but I can find that out. From a documentation point of view, we have the issue that xxxxx is still employed. xxxxx's reality is probably described in the item highlighted below, but that would be difficult to discuss in front of xxxxx. Any thoughts?
It is provided further that the existence or degree of nonservice-connected disabilities or previous unemployability status will be disregarded where the percentages referred to in this paragraph for the service-connected disability or disabilities are met and in the judgment of the rating agency such service-connected disabilities render the veteran unemployable. Marginal employment shall not be considered substantially gainful employment. For purposes of this section, marginal employment generally shall be deemed to exist when a veteran’s earned annual income does not exceed the amount established by the U.S. Department of Commerce, Bureau of the Census, as the poverty threshold for one person. Marginal employment may also be held to exist, on a facts found basis (includes but is not limited to employment in a protected environment such as a family business or sheltered workshop), when earned annual income exceeds the poverty threshold. Consideration shall be given in all claims to the nature of the employment and the reason for termination. (Authority: 38 U.S.C. 501(a))
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CS and Belle, thank you both so much for providing details about how to access veterans' benefits. Most professionals who work with older adults don't know this information. We have to scrape together pieces of info by ourselves.
Iris
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Thank you to all who have contributed to this discussion. @thislife pointed someone here in another discussion, so I thought I'd provide an update on the journey.
An important distinction I've found is VA Benefits and VA Health Care. Earlier this week we went to the local Veterans Service Office. This was housed in a building that housed other county level services such as the local council on aging. We were able to get an appointment as walk-ins and were seen after a short wait.
They are all about the paperwork, getting everything documented properly to get approved for benefits (payments as opposed to healthcare services). A good portion of what he showed us were things folks here had shared. I felt very prepared for the meeting. He went over presumptive conditions for approval. He didn't seem familiar with the "catastrophic disability" for Alzheimer's. I wasn't concerned as we're early in the process. He echoed what the person at the Long Beach VA said: document all of your conditions/disabilities and let someone else sort out if they are service related. When looking in the system re dementia he relayed there is a known connection between hearing loss and dementia. He recommended when we go to the healthcare system, request testing for hearing loss. He provided us forms and handouts and encouraged us to set another appointment if we need help.
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Our next stop was the local VA clinic. They have ordered labs for him, and assigned him to a PCP within their system. We asked about the social worker that works out of that clinic. We were advised the doctor can set that up when DB comes in for his appointment. My thoughts now are to get as much documented as we can through the VA health care system before we file for VA disability benefits.
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Here is an update on our journey with respects to the VA. For context, we had an appointment with the private neurologist for an APOE4 blood test, and a PET scan. We wanted to check if the VA could do these at less expence.
BLOODWORK - A week ago we went in to have the VA blood draw. I had the paperwork on the APOE4 testing. We were told that the person doing the blood draw couldn't add the order from the outside Dr. If DB had already been working with a VA PCP he could have checked with the DR about adding that.
PCP APPOINTMENT - In another thread someone had talked about bringing copies of the file from the private neurologist and providing it before the appointment. The day I read that advice I called the neurologist, had copies made, and dropped it off to the VA. The Dr we had the appointment scheduled with today was out, so we were seen by a PA. I really liked her and she was very thorough in her interview with DB, but was still learning when it came to process questions. We learned there is a separate audiology clinic and we could self refer. (Appointment set for late June). She went over all the blood work and took down all his current meds. We went over the dates of the other tests by the neurologist, and it seemed that had not added the paper work to his file yet. When asking him how he slept and if he woke up during the night, he stated he was in bed by 9 but woke up during the night like around midnight, 2 am, and then up for the day at 4. She offered to refer him …I was expecting to hear for a sleep apnea study (older bro and I both dx)…but she said something about a mental health doctor that could help him with that. He's willing to try anything that would help. We talked about our order for a PET scan and wether the VA could do that, she was going to follow-up with her collegues on that. She asked DB about his perceptions around his dementia. He mentioned his fogginess causing him to stop supporting clients as an Tech Guy. He mentioned he's still doing fine where he's worked for decades with his brother. (More on this later.) We spoke with her briefly about working with the Social Worker available there at the VA med clinic. She indicated that would come later if he was having difficulties with ADL. I held my tongue on somethings a DB was right there. We set six month followups on bloodwork and next PCP appointment.
A couple of hours later she called me and had a question on his referrals. I started asking again on the Social Worker. She was suggesting I work through the VSO (benefits coordination). I discussed my concerns about DB's disability rating. I told her that although he's still working with YB, if this weren't the company he'd been working at for decades and that YB was his boss, he wouldn't still be working there. I'm hoping that the testing that will be done will help with his disability rating, and that my understanding is that if he has a confirmed ALZ dx that it would qualify him as "catastrophically disabled". We did a little back and forth as to whether his disability rating would come through the medical arm as a result of testing or if it came through VSO and the administrative benefits arm. (My take is the Benefits side makes determinations based on what the Medical side provides, and that the Social Worker from the medical side can help with evaluations of his disabilities (manifestations of his dx).) It started to feel like a chicken or egg discussion, and she said she'd ask for a nurse or the social worker to call me back to answer my questions.
I'll will continue to provide updates in hopes it can help someone else on the same path.
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Re the consult on the sleep issue is with a TIDES nurse. Just moments after I typed this up she called and we set a tele-health appointment for next Thursday. So far they get high marks for responsiveness.
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I don't know what a TIDES nurse is or does.
Sleep apnea is not a mental health condition. I don't know why this was brought up.
Regarding "doing fine working for brother". Often caregivers will want to qualify their PWD as being disabled while still working. Although there may be some nuances, being disabled means not being able to work to any significant degree. To ask for disability while still "working fine" is confusing to the professionals, who mostly are not too knowledgeable about dementia or qualifying for disability. Example, my disability lawyer told me to apply for unemployment benefits at the same time that I was applying for long term disability benefits. A person cannot be available for work and unable to work at the same time. Why did he say this to me? I'm still perplexed. I think he thought I was trying to scam being disabled. But I had significant memory loss and executive function trouble.
Iris
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Hi - sorry I did not see this sooner. My DH met the criteria by Stage 4 because he has anosognosia and did not realize his impairment. He was a danger to himself and others with the hallucinations and delusions causing him to weapon up daily and esp nightly, thinking there were intruders he needed to protect me from. Could have harmed me or others by not recognizing us. Also, did not realize he was leaving the gas burner on, putting metals in the microwave (fried a couple of things!), etc.
* Lesson: we cannot underestimate how wrong things can go when someone is not aware of their illness but is very mobile, looks and sounds "fine", and is unsupervised.
He also was a wanderer from Day 1, so he really could not be left alone for that reason or he was a total danger to himself. Of walking off in freezing temps not properly clothed (did that once) and got lost. Or just getting lost or driving off and crashing etc.
*Note, the application had 4 different tools that could be used to track his ADLs/IADLs and based on that score regardless of Stage, your LO may qualify already. Well before Stage 6, but yes by 6 or 7 they are assured to qualify for the Cat. Dis status.
HERE is the application form. You will need the VA Dr's letter &/or assessment tool of choice from those listed (or some of them will review a civilian Dr's letter and approve the form.) I had both by the time our wild goose chase was over. Truly more medics and social workers in the VA system need to know about this, especially with how many people - esp. elders and now younger onset plus folks with long COVID brain fog are experiencing cognitive impairment — this is not something that caregivers need to be begging for or running the gauntlet over. Good luck to you. Biggest benefits to me/us are the no-co-pays for scrips and visits, and the respite + HHA funding. Priceless!
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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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