VMLI and SDLI

[Nuts]

Wow, I just had a wonderful experience with a very nice lady with the VA insurance division. She found problems with our insurances that might have cost me a lot had I lost my darling recently. We refinanced the house and did the paperwork to reapply for mortgage life insurance. It turns out he never did it the last time we refinanced--which means I would not have been covered.

When hubby applied for the waiver of premiums for the SDLI, he was denied because he was still working (from home). So, over a year later, he's finally on disability, has been approved, and thought he'd applied for the optional 30K. Well, it turns out that the denial letter was wrong, he was eligible for waiver of premiums from the time he was 100% disabled by the VA. Ok, now keep in mind that you only have one year from being eligible for waiver of premiums to apply for the additional amount. So now he receives a refund for the premiums paid Since his original application, but we are past the one year mark to apply for more. She's handling this all for us and getting it cleared up. I didn't even realize we'd had a problem.

Clearly, I need to pay a LOT closer attention. I thought he was ok to handle these things, but clearly it's going to take both of us.

Oh, and he had not filled out the form requesting the additional amount. He did a conversion form to change the first policy, but didn't so the second application. We fixed that today.

CALS and PALS--just a word of advice. Make sure you are both looking over these things. I hate to think about finding out too late that things we thought were in place weren't.

FABULOUS service from the VA on this!!

Becky

 

[maryhahnward]

Nice Becky! I love that! Tom was denied the $10k policy when he was first compensated for the ALS because he was disabled for another condition. Doesn't seem right does it? But that was 6 years ago. We never apply for the $30k because he was denied the $10k.

 

[gooseberry]

Nancy Encardado, Nuts? She was amazing for me.

 

[chally]

Hey Becky& Mary,
I have had the waiver on 10,000 for years and back in the 1990' s they asked if I wanted to up it to 30 k being dumb and not thinking I said no( cheap skate ) course years later I want it and no amt of pressure on them would get it for me (. PVA, senators etc) one year is all ya get to jump on it and that is that. Hey we almost got the addition done and getting used to lunasin but no results. My breathing is going down but I got the trilogy and that's big help. Love ya guys chally

 

[Nuts]

Chally, I absolutely understand you not taking the 30K before. There is a BIG difference between being disabled and being terminal. Sometimes I cringe about the amount of insurance premiums we are paying out every month, but then Matt walks me through the math and I know that there is only one policy with questionable worth.

I'm so glad you have the Trilogy. Which VA got it for you? We were told Durham wouldn't, so we use work insurance that will end later this year. I guess it's time to research that switch to Medicare.... It's always something. It's good you're doing better with the Lunisan--I wish you were seeing the results that Matt is seeing. I wonder if this study will tell us whether the folks who will benefit will see early results so that others don't waste their time. Of course, we may also learn that some folks take longer. I'm grateful that you are able to stick with it.

Mary, it seems like a terminal illness should give a vet another shot at the insurance. Especially one like this one. ARGH.

So as to progress: if I pull Matt's legs up by bending the knees and laying them flat (knees pointed out), he can push them back down the bed. That is new. He cannot pull them up (different muscles?), but pushing is GREAT!

He can roll over both ways and roll back without his ankles remaining crossed. This is HUGE for my sleep!

Our biggest struggle now is with fatigue. On those days when he sleeps all day (once a week now), I have to wake him to drink the shake and eat his meals. With the diabetes, there is no choice. I'm tracking how often his happens now. I hate the thought of a feeding tube when he can eat so well and so much the other six days a week, but...

I sic'd Matt's dad on him over his glucose levels and diet. He has agreed to try two weeks without bread and potatoes (I explained to him last night that pasta and white rice are included). If we can maintain his weight and lower those readings, perhaps we can convince him. I told him it wasn't fair of him to expect me to haul him to dialysis with a feeding tube and ventilator (the future I see if we don't get this under control). Since he's said he wants to vent, I'm not giving him anymore slack on the "I'm dying within the next couple of years" argument.

I really do love my father-in-law. He is the only person in the world who Matt will not argue with, and he supports me totally. I am the most fortunate unfortunate wife I know.

Becky

 

[GregK]

Becky - the VA issued me the Trilogy.

 

[Nuts]

Greg, which hospital? Maybe it's just an issue with the Durham VA. If so, it might be time for me to launch a new campaign. Darn. I'm already tired of fighting.

 

[GregK]

For this region it's Denver.

 

[Nuts]

Greg, thanks. I wish there was some consistency between regions. I know they are independent of each other, but it can't hurt to add "other regions do it" to the argument.

Becky

 

[maryhahnward]

Becky

The Durham VA will get Matt the Astral - in essence it is the same as the Trilogy - they will not order a Trilogy is my understanding. They even got Tom a back up one plus they send out a respiratory therapist once a month to check Tom and the machine out. I fought that battle with the VA about two years ago to get him the machine. It took months, too many in my humble opinion to get him the machine, but he does have it and he can't imagine not having it. I know for certain they have gotten it for other vets since then.

A few months ago Tom had a problem with his machine. It is an involved story but the bottom line is that now vets that have been issued the Astral from Durham and live further than like 30 miles, could be a bit more, have an in home respiratory therapist once a month. The RT that comes here told me all the vets issued this machine get in home visits. I was really angry when his machine wasn't working right. The answer I received was to go up to the Durham VA. It's 135 miles one way. I made a very big deal out of it because if they were sending an RT to the home, like I had been asking for, we would have prevented the problem.

So good hear the Lunasin is working some for Matt. I wish it was working for you Chally - that you were seeing results but you know there is still time so don't lose hope. Great to hear the addition is about done. We love ours. We just got Tom a spiffy shower chair - so grateful to have a large shower. We are seeing some changes in him lately.

Tom is still thinking about the Lunasin - he will meet with the team about it soon. He too struggles with diabetes, not as severe as Matt though. Tom's fasting numbers are nothing to brag about, they seem to be getting worse. I'm taking him out of the VA Home Based Primary Care program because no one on the team knows anything about ALS. I wish I had never changed him from Durham. I kind of had things set and manageable so we are going back to that. The VA Home Based program is not helping to manage the diabetes either so I'm taking him back to his wonderful non VA PCP. I have not enjoyed navigating the two VA's. We end up going to the Durham VA for equipment anyway and the team up there knows ALS pretty well. I'll just suck up the drive.

 

[gooseberry]

Tampa VA issues trilogy machines, a backup, 2 batteries and a monthly rt visit. The rt home visit is a relatively new program so people with difficulty do not need to go in . Pulmo visits can be thru jabber unless you need pfts.

 

[maryhahnward]

Honestly, I think the VA needs to have a national focus group of veterans with ALS and their caregivers to share their varied experiences, what works with the VA, what doesn't, how they can make it better for this particular group.

 

[Nuts]

D r. Bedlack was working towards centralized ALS management (with him in charge, please) at one point. I'll have to ask him if that is still on the table.

 

[maryhahnward]

That would be great wouldn't it? I'll ask him tomorrow. We are heading up for T's clinic day tomorrow.

 

[Nuts]

Oh Mary, please do ask. Darn it, I was up in Durham today (chasing numb fingers and more happy pills).

Matt's liver enzymes are up, so he had to stop the Riluzole. I am convinced that it's the Diabetes that is causing the problem, so now we start tallying the damage done because the poor guy has to choose between eating what he wants because he's "going to die anyway" -- his words, and giving up one of his few pleasures in order to maybe live better longer-without the joy of his favorite foods. Grrrr.

OK, back to VA benefits. I asked about increased hours for the aide today and was told that ALS is the only instance where they (Durham, anyway) give more than 10 hours a week. We can try to get two more hours in the evening to reverse the getting up process, but I can tell that he's not ready for that. The social worker also mentioned a change to the system coming soon but didn't know details about how it would work. She alluded to the VA billing our long term care insurance if we have it. The more I think about that the madder I get. Health insurance is one thing--I agree with that. But there is a limit to LTC and we paid for it in order to augment what the VA will do. I sure hope she or I misunderstood.