New Here - Looking for help for brother

concerned_sister

Here is a quick hit from a google search, "The TIDES project provided guidelines for collaboration between mental health and primary care specialists with support for assessment and triage, patient education, and proactive follow-up of patients with symptoms of depression." The person I spoke with on the phone was having trouble remembering the acronym though the D was for depression and the S at the end was for solutions. The sleep apnea was just where my mind was going per family members with dx, I think my internal "Huh, what?" prevented me from clearly hearing and remembering what was said. But it seems the doctor I spoke with is looking it at it from a mental health perspective and evaluating for the sleep pattern being a sign of depression.

The dilema of being disabled yet still working is a hard nut to crack. Back in my post on April 25th there is a passage that is in bold. Stating that there is special consideration given when the employment consists of being part of essentially a family business. The description above aligns with what we have. YB is looking for a way to ease DB in to a disability retirement without coming off as the heavy. We're hoping with documentation of his condition we can submit the claims in the VA system for disability, and then also have DB see that it's in his best interest to take leave from work and file for Disability through Social Security. YB has said that anyone else at the level of performance of DB would probably have been let go.

concerned_sister

Thank you Butterfly Wings. (Forgive the following, it rambles a bit.) Re weapons, I guess I can consider ourselves lucky in that respect. In the early days reading things here I saw that getting weapons out of the house was recommended. YB approached SIL about this. Her initial reaction was to ask DB about this. Our stepdad was a collector and had given DB a number of guns. DB was proactive about getting them out of the house, and to an associate that could sell them (other than one he was gifting). That happened late April. Earlier this week he found one more to arrnage to get in the right hands. He's even enlisted YB to come look through the attic to see if he missed anything that had been stored there.

We all know the trueism, everything was fine until it wasn't. Currently DB always walks with friends, and we have tracking on his Keys, phone and in his wallet. You know, this reminds me of a conversation I had with SIL when DB was getting his blood work done.

• Their current area is very close to many scenic walking trails. He always walks with friends. But, of course, that could change.
• At some point SIL wants to retire and take care of Hubby but with the difference in their ages she would not have much in the way of retirement benefits for herself, and will be too young for social security.
• She brought up the option of moving to a one story retirement community - the both of them. That would mean selling thier current home, which would certainly support them from projection I looked at. (I have not broached this since I got good advice that if they were to reach that decision it would have to come from them, especially her with respect to "stage 8".) Perhaps if/when he starts wandering is the time to look at this transition.

DB isn't driving and I'm convinced this is setted at least until his next MMSE. As far as cooking at home, his preference is the air fryer. It has timers and automatic shut off so there is a reduced risk there.

But all these risk evaluations would change when he retires and is home all day. I think the best metric I've seen is the story about 'dad' not knowing to exit the house or call 911 when the fire alarms were going off. I think signs that his decision making has deminished to a pre-teenager is likely to be the time to look at moving.

FORGIVE THIS FOR BEING DISJOINTED. I finished and posted this and then started working on the next post about disability rating, In that post quoting from official sources, the inability to communicate can be part of this definition of catastrophically disabled. My reference above to still being able to decide to call 911 might be persuasive that someone can be left alone. But, on further reflection that's not enough. To me, it's not enough to know to call, but can you effectively communicate if you were to call. To be honest in DB's pre Aricept days, I would judge him as a fail. At his current level of functioning it's close call. I'll have to think long and hard about that one. I remember the wise councel to judge our PWD by thier worst day. DB hasn't got caught stammering mid-sentence in a while. He was pretty effective communicating with the Dr today, but I distinctly remember twice the large child like eyes when he looked to me as if to say help me out here. In both cases, what he wanted to say came back to him in seconds, but I really have to wonder how would he be under pressure.

BUT BACK TO VA DISABILITY. My thinking was to look at filling that out once we got the APOE4 and PET scan results. As they are part of the goldstandard of evaluation, I'm still optomistic we can get the VA at least set up to recognize him as Catastrophically Disabled. I'll now go click on the "here" link to see if there's anything that makes me rethink this.

concerned_sister

Just quoting from the form for each reference. 1A. and 1B. perhaps can be generalized as outwardly visable disabilities. "2" references the global assement of functioning. I've quoted the behavior that would result in a score of 30 or lower.

"VHA HAS DEFINED A "CATASTROPHICALLY DISABLED" VETERAN TO BE A VETERAN WHO HAS A PERMANENT
SEVERELY DISABLING INJURY, DISORDER, OR DISEASE THAT COMPROMISES THE ABILITY TO CARRY OUT THE
ACTIVITIES OF DAILY LIVING TO SUCH A DEGREE THAT THE INDIVIDUAL REQUIRES PERSONAL OR MECHANICAL
ASSISTANCE TO LEAVE HOME OR BED OR REQUIRES CONSTANT SUPERVISION TO AVOID PHYSICAL HARM TO
SELF OR OTHERS. THIS DEFINITION IS MET BY CONDITIONS LISTED UNDER 1A OR 1B OR 2."

2. THE VETERAN IS CATASTROPHICALLY DISABLED IF THE VETERAN PERMANENTLY MEETS ONE OF THE
CONDITIONS SPECIFIED IN THE FOLLOWING SECTION: (Check the appropriate item for which the veteran qualifies, and attach the completed assessment tool.)…3. A score of 30 or lower using the global assessment of functioning (GAF)

30
|
21
Behavior is considerably influenced by delusions or hallucinations
OR serious impairment in communication or judgment (e.g., sometimes
incoherent, acts grossly inappropriately, suicidal preoccupation)
OR inability to function in almost all areas (e.g., stays in bed all day; no job, home,
or friends).
20
|
11
Some danger of hurting self or others (e.g., suicide attempts without clear
expectation of death; frequently violent; manic excitement)
OR occasionally fails to maintain minimal personal hygiene (e.g., smears feces)
OR gross impairment in communication (e.g., largely incoherent or mute).
10
|
1
Persistent danger of severely hurting self or others (e.g., recurrent violence)
OR persistent inability to maintain minimal personal hygiene
OR serious suicidal act with clear expectation of death.

Iris L.

Regarding retiring and staying home all day: the PWD should be engaged in fulfilling, safe and failure-free activities on his level. Socialization and brain stimulation are aspects of Best Practices.

Iris

concerned_sister

Iris,

Thank you for the reminder.

M1

I would be very surprised if you get a catastrophically disabled rating while he is still working. Maybe later in his disease course, but not now. I read the above to mean very advanced disease.

northernlady

https://alzconnected.org/discussion/comment/210266#Comment_210266

HWD just got approved Cat 4. First appt with VA in June. We (my sister and I) did a lot of educating of front line staff regarding the forms, which policy applied, etc. We were very fortunate that the admissions officer was grateful for the learning experience (yes, I was shocked when he told me that).

Hope others who try to get Cat 4 designation succeed.

concerned_sister

Thank you M1 and Northern lady for your input.

A few moments ago I got off the phone with the VA Social Worker. Among other things I explained my lack of clarity of his role on the VA medical side of things and the VSO on the benefits side of things. My high level understanding is that his role can help us navigate the medical side of things such that we can document his disabilities to submit through a VSO for approval. He wasn't quite comfortable with that summary, but we proceeded.

I mentioned that I believed an ALZ diagnosis which we are pursuing would qualify him as catastrophically disabled. His comments were along the lines of a quadriplegic etc. I'm so grateful I have this all fresh in my head. I told him about the second mental health criteria where decision making and communication are affected making the PWD unsafe to be left home alone. I gave the examples of reaching a point where you may not know to call 911 or be able to communicate the nature of an emergency. I pointed out to him how this met the GAF criteria.

I mentioned his communication has been better since Aricept, but reaching that point is foreseeable with someone with early onset ALZ. He stated that level of difficulty was not present yesterday in his conversation with the doctor.

He offered us an appointment next Wednesday morning to discuss this.

I mentioned it is not always recommended to have this discussion in front of PWD. He stated for now he wanted DB on the team making decisions. He said that fully aware of the medical advance directive being in place.

He gave me his direct cell phone number, so I'm glad to have that for any follow up that would be better out of earshot of DB.

ButterflyWings

If you or someone else has POA it is not up to the social worker to decide that "he (wants) DB on the team making decisions". You may need to produce the documents every time, and channel Julie Andrews playing Maria in the Sound of Music, singing "I Have Confidence" with its lyrics on…being firm, but kind.

There is a real wild-goose chase ahead of you if you do not stick to your streamlined message about PWDs eligibility for Catastrophically Disabled status, Priority 4.

Once his ADL scores on any 1 of the 4 tools identified in the form are in the range listed for Cat. Dis., it is no longer up to interpretation. But you will have to be firm about that. Its not like you are trying to cheat the VA nor make something up. These are his benefits, and the lack of knowledge regarding dementia as a serious disability is no reason for people to deny you or him. Been there, done that. They mean well I think, but truly don't know. So you will have to be the expert.

ButterflyWings

OK, good luck to you. Persistence will help move this forward. FWIW, by mid-late stage 4 on the Katz scale, my DH was dependent for eating (could not secure food for self, nor prepare his own meals. He sliced his finger trying to open a bottle with a steak knife and just watched it bleed. And burned a hole through a dish cooking metal in the microwave and more. Total fire hazard; dressing not appropriate for weather esp winter; bathing totally averse and also a fall/fainting risk, left water running multiple times causing kitchen and bathroom floods; and toileting he couldn't get clothes back up and on right, and clogged the plumbing repeatedly with unflushables, causing damage and cost. Mis-managing meds could have poisoned him easily or just not taking asthma meds properly, which literally did almost kill him. Wandering was the serious wild card. Bottom line, he was physically strong and "well" could talk a good game but could not survive alone, period. This was still only in Stage 4. He had to have constant, line of sight supervision. Sad but real. 24/7 care

In case anyone needs this now, or in the future… for VA Catastrophically Disabled status, dementia qualifies.

*Here is the updated Cat. Dis. Form:  Download VA Form 10-0383 (PDF)

*(This is the section of the form that applies to PWDs): 
DEFICIENCIES OF PHYSICAL OR MENTAL FUNCTION:
2. THE VETERAN IS CATASTROPHICALLY DISABLED IF THE VETERAN PERMANENTLY MEETS ONE OF THE CONDITIONS SPECIFIED IN THE FOLLOWING SECTION: (Check the appropriate item for which the veteran qualifies, and attach the completed assessment tool.)
1. Dependent in three or more activities of daily living (eating, dressing, bathing, toileting, transferring, incontinence of bowel and/ or bladder), with at least three of the dependencies being permanent with a score of 1, using the Katz scale.  

2. A score of 2 or lower on at least 4 of the 13 motor items using the functional independence measure(FIM).  

3. A score of 30 or lower using the global assessment of functioning (GAF).

*(And here are links to these assessment tools. Only one is required):

Katz Scale:  https://www.alz.org/careplanning/downloads/katz-adl.pdf , OR

FIM Functional Independence Measurement:, OR

GAF Global Assessment Functioning Tool: 

concerned_sister

Thanks, I really appreciate all your input and voice of experience on this. I had to watch a video of the confidence song. I didn't remember it at all.

In a pick your battles sort of way I'll go along with DB being present for the first meeting. I'll plan to take notes and follow-up separately as needed. I'll not answer questions for DB, or at least strive not to.

SIL reports he is not yet needing assistance with ADL. I've noticed his collar on a polo shirt being awkward as if not straightened if not pulling it over his head, and choosing not to shave some days. But generally he's self sufficient in these tasks. He does cook things in the air fryer without issue.

But there are the other more subtle signs that he is misfiring:

Multiple times within 24 hours asking to be reminded of upcoming appointments though they are in his calendar.

Frequently using the wrong names for folks.

Needing help managing finances- notifies me of any bill that comes in. (This is a good thing for practical reasons but an indication of not being self sufficient, though not an ADL.)

Though lessened, still frequent word finding issues.

These things in the present tense are not catastrophic. But we know the path he's on. I guess what I want is confirmation by the VA that they are familiar with what is likely, and a coherent plan of steps to take when issues with his ADLs show themselves.

BUT isn't it true that it's an "or" with decision making and communication by themselves would qualify when an ALZ diagnosis is on the table?

Iris L.

CS, it may help you to understand the distinctions between ADLs and instrumental ASLs. Managing finances is an IADL.

Iris

concerned_sister

Thank you! I'm about to call it a night, but I'll familiarize with that tomorrow.

Good Morning,

Here is a brief quote from some information from NIH:

"…The major domains of IADLs include cooking, cleaning, transportation, laundry, and managing finances. Occupational therapists commonly assess IADLs in the setting of rehab to determine the level of an individual’s need for assistance and cognitive function.

IADLs are commonly confused with basic activities of daily living (ADLs). The major domains of ADLs are feeding, dressing, bathing, and walking. In contrast with IADLs, ADLs are necessary for basic functional living. Deficits in performing ADLs may indicate the need for home healthcare or placement in a skilled nursing facility."

Also at the same source:

"…The ability to perform IADLs is the first to decline in individuals with Alzheimer disease, while the ability to perform basic activities remains unimpaired. This finding can be helpful to healthcare professionals in detecting early-onset Alzheimer and dementia. "

concerned_sister

We have the meeting with the VA Clinic social worker today. I'm trying to think of good questions. Any contributions are welcome.

What is your role here, and how can you help us?

Under what conditions should we contact you?

Do you ever help coordinate (help with documentation) when there are changes in overall medical condition that would trigger a change in medical benefits?

concerned_sister

Thanks, I enjoyed that. A whole lot of truth in there. Or at least that's the way it feels sometimes.

SDianeL

Find your County's Veteran Service Officer and go to them directly to ask about claims if the DAV rep isn't a Veteran Service Officer. From the VA Website: "Veterans who served on open sea ships off the shore of Vietnam during the Vietnam War are referred to as "Blue Water Navy Veterans." Veterans who served on a vessel operating not more than 12 nautical miles seaward from the demarcation line of the waters of Vietnam and Cambodia, as defined in Public Law 116-23 are eligible for the Agent Orange Registry. Please note that being in the Agent Orange Registry does not verify eligibility for benefits." He must have been exposed and have an illness on the list of Agent Orange related presumptive illnesses like Diabetes Type II or Ischemic Heart Disease. If he's approved for a presumptive illness on the Agent Orange list, you can then file a claim for Dementia (which is not on the list) but could be secondary. Hope this makes sense. Meanwhile, call this number to start with basic Caregiver help. They have different levels of help. https://www.caregiver.va.gov/Care_Caregivers.asp

SDianeL

another link. When he becomes unable to stay by himself you can get respite care after they evaluate him. https://www.va.gov/GERIATRICS/pages/Respite_Care.asp

concerned_sister

SLDiane, thanks for that information. He was at sea, but in a nuclear submarine on surviellence missions during the cold war. But I'm sure that will help others who read this thread.

I've had a busy last couple of weeks so I haven't been on here much. Let me share some updates:

• The social worker conversation went well, but bottom line the things he'll be able to help DB and his wife come further along in his progression. But he was very friendly and eager to be helpful and made sure we had his number if we have any questions for him
• At the time of visiting the VA PCP part of the interview asked about how he was sleeping her reported waking several times during the night. They set him up with the TIDES team. I don't remember the meaning of each word in the acronym but it part of their mental health unit and the D stands for depression. In the teleconference with the tides team DB answered a bunch of questions and at this point he isn't showing signs of depression. This will be an ongoing contact. She advised him on sleep hygene (turning off electronics, avoiding caffine in the afternoon, avoid liquids past 6 pm etc). He was able to report some improvements when she called again a week later. She consulted with the doctor on her team and melatonin was prescribed. He should be starting that shortly. He's been approved for a sleep study, but DB wants to delay that until seeing how/if things change with the melatonin. (Note oldest brother and I have sleep apnea so the sleep study can rule that in/out.)
• He went to the optomestrist at the VA and ordered new glasses at no charge.
• He has Audiologist, and Neurologist appointments scheduled. The TIDES rep suggested we have the PCP administer the MOCCA test at his November appointment. We discussed the Neurologist is in August, so we should ask about that during that appointment. They'll have another teleconfrence in a month.
• We've been having trouble connecting with Nuclear Medicine to set up an appointment. I believe this is for the PET scan.

As previously mentioned, this is all with the goal in mind of getting an accurate disability rating. Also this may help with the decision to take a disability retirement from his day job, and seek SSDI. Luckily DB is of the personality type that enjoys the attention (of all the appointments) so it isn't the bother some folks experience. Overall he's very pleased with the VA and all that they are doing for him.

concerned_sister

@MB Wendt and @orth

The following was posted in a discussion "Frustrated" mostly focusing on dealing with overgrown toenails.

"MB Wendt She/her/hers / Ella Member Posts: 4
First Comment
Member
7:25AM
DH was recently diagnosed with alzheimer's…his PCP prescribed donzepil. I was wondering if he should have a PET scan, which va will cover, or if it is basically a waste of time and added stress for him."

I decided to answer you here as it fits with this thread I had posted, and had been considering updating.

My DB was prescribed donzepil (generic Aricept), and it has improved his ability to complete his sentences. He still has issues with using wrong names for folks, and trouble word finding. In recent weeks I've noticed a tendency to want to reminisce about his days in the Navy (about 40 years ago), the various cars he's owned over the years etc. It seems likely this is disease related.

Early on in this process he was seeing his private practice PCP and Neurologist. We got his set up with the VA, as knowing with the expected progression, it is likely he will be eligible for benefits from the VA such as supplies and limited respite care, but every bit will help. We were able to schedule the PET scan orginally ordered by his private neurologist to be filled through the VA system, and this is scheduled for next week. He's scheduled with a VA Neurologist in early August.

DB agreed to the PET scan, wanting to understand more about what's going on. My reasons for wanting it for him is to bolster any claims he may have for benefits. My role in the family is to help him (and his wife) with such things.

concerned_sister

From Microsoft Copilot

Question: What happens during a PET scan of the brain?

During a PET (Positron Emission Tomography) scan of the brain, here’s what typically occurs:

1. Preparation: You’ll be asked to fast for several hours before the scan. You may also need to avoid caffeine and strenuous exercise.
2. Radiotracer Injection: A small amount of radioactive material (a radiotracer) is injected into your bloodstream. This tracer is designed to bind to specific molecules in the brain, such as glucose or amyloid proteins.
3. Uptake Phase: After the injection, you’ll rest quietly for about 30-60 minutes. During this time, the radiotracer accumulates in different brain regions based on their metabolic activity or protein levels.
4. Scanning: You’ll lie down on a PET scanner bed. The scanner detects the emitted positrons from the radiotracer. Images are created, showing areas of high or low activity. Different tracers reveal different aspects of brain function or pathology.
5. Duration: The actual scanning process takes around 20-30 minutes.
6. Post-Scan: Once the scan is complete, you can resume normal activities. The radiotracer decays quickly and poses minimal risk.

Remember, PET scans provide valuable information about brain function, metabolism, and pathology. They’re commonly used in diagnosing conditions like Alzheimer’s, cancer, and epilepsy.

QUESTION: Will the patient need to respond to questions during a PET scan of the brain?

No, during a PET scan of the brain, the patient does not need to respond to questions. The procedure involves lying still while the scanner captures images of brain activity. The radiotracer injected earlier provides the necessary information. If you have any other questions, feel free to ask!

concerned_sister

The above information is to give context to the following. This past week, as usual, I spent time with DB and his wife on her day off. They had an errand to run in Los Angeles, and I handled the driving. When we shared lunch afterwards, we talked of upcoming todo's. We talked about the PET scan scheduled for his wife's next day off. It was striking to me that he had no concept of the PET scan. He talked about whether or not he'd have to be answering questions during the PET scan. It was as if he wondered if it would have MMSE type of questions. I didn't think he had a sence of "picture" that would be painted of his brain activity, and where there may be visible deficits.

Does anyone here have any stories of how their PWD reacted to their results…if they were shared with them. Any input on what to expect is appreciated.

Quilting brings calm

”Does anyone here have any stories of how their PWD reacted to their results…if they were shared with them. Any input on what to expect is appreciated.”

Mom was told the results of her CT scan. She didn’t understand what it meant. She’s heard her MMSE scores and the word dementia several times. She never reacts as if she understands it. She is stage 4 heading into stage 5.

Step-dad didn’t get a CT/MRI. He got the full 2.5 hour neuropsych testing. I was there when he got the results. The doctor gave him his own copy of them. I don’t think he understood any of it. Mom told me later he wanted to share the document with the activity director at the AL, as if he was proud of it. Interesting fact: Mom has never understood her own situation - but she totally understood the diagnosis he was given.

concerned_sister

Thanks QBC, that is interesting. My brother and his wife are planning to visit a relative on her side that's probably stage 6/7 from thier description. The trip will probably be in January. I had started to wonder if he would have an "oh no, that's what's in my future" moment. Perhaps not.

Bailey's Mom

concerned sister…you are certainly a good sister…they must appreciate your help immensely! DH is set up with the VA with a PCP already but don't know what he will be eligible for as far as benefits as he was never in combat & does not have a disability. Going to see if they will order a PET scan. He has had the 2 hr Neuropsych exam and it was ok in some areas but really bad in others. His PCP didn't share the results with him as I think she knew he wouldn't understand it and it would just be depressing. My next step is to meet with an eldercare atty but need to get my financial records in order first…DH will think this is unneccessary and probably think that I am trying to cheat him out of his money, so will try to be under the radar with that. I appreciate everyone's comments and feel less alone even though sick at heart.

concerned_sister

Bailey's mom, I think I was over-prepared for the meeting with the CELA. I had a printout of their budget so those numbers were handy. We had a printout of their last mtg statement so we knew what the balance was there. We had the numbers available as to how much was in the IRA. We may have been asked each of their annual income, or I may be confusing that with the VA interview. I think we had the number available for projected Soc Security benefit. That may have been overkill but we had it.

Things I know that were essential - decisions already made on the POA and succession if his wife did not act. The decision made if it was "triggered" or effective immediately. We also had a draft copy of his living will/health care directives with those decisions already made. We were asked for a copy of their marriage license, they did not have it and got by without it. We are in Calif so other states would vary. She advised them to put there home in a trust and that is part of the package of documentation we paid for. The question came up whether making extra payments on the mortgage would be wise. (They've done that pretty regularly over the years.). Her advise was to save up the money for future needs as the future with this dx is likely to be a drain on resources. We talked about the VA benefits per a "catastrophic diagnosis". As in your case, there is not a direct link to his service so we do not expect money such as a pension benefit, but we're already seeing benefits in all the health care he has access to and rx at no cost. When incontinence becomes an issue they will cover those costs.

One benefit DB is very happy with is working with a representative of TIDES, their mental health unit. He has had sleep issues and they are working with him on that. I think referencing it as his counselor to help with sleep issues removes any possible stigma of working with a "mental health" counselor. She has a psychologist above her that she consults with.

Bailey's Mom

Concerned Sister…thanks for all of the info…very helpful. I had a serious heart surgery a few years ago so have durable POAs and advanced directive in place…will have to change them to remove my DH from mine and know I need to do it soon. We have no children and no close family, so a trust won't really work for us…live in Florida which is a different setup from Calif. We do have extra assets & I know if I don't set things up correctly I will end up having to spend down most of them and end up living with almost nothing, which would hard to take after working so hard all of my life. Spousal Refusal (available in Florida & NY) and a divorce seem like the only options that make sense…both horrifying. There is a good chance that I will die first…his family has great longevity, even the ones with dementia…and I have to prepare for that possibility. So many decisions to make…it is mind blowing.

So far we haven't had any extraordinary medical costs…medicare has covered everything and the va will pay for some things that they won't when we need them. I imagine that time is coming…Ugh.

concerned_sister

DB's wife is much younger than him, and he has early onset. This leads to a likelihood that he will be at a point to not be left home alone before she can retire without great impact. I see a point where they'll need to hire in home care or pay for adult daycare.

Iris L.

CS, I had an Amyvid PET scan that determined that I did not have excessive amyloid in my brain, thus my neurologist declared that I did not have Alzheimer's Disease. Frankly, I don't remember anything about it, but what you posted sounds right. My scan was obtained as part of a clinical trial, so I did not have to pay $6000.

Iris

concerned_sister

Iris, thanks for sharing your experience.

concerned_sister

@Chelly814 I hope this discussion is useful for you.