Insurance, Hospice, & The Universe Balancing The Books

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I thought I’d update the blog with a little bit of what I’m experiencing here in “my husband is dying” land.

Hospice. Our insurance (Kaiser) pays for Hospice 100%. Hospice’s “gating requirement” is that the patient has been given less than 6 months to live. So, in actual fact, we could have called in Hospice nearly 2 years ago, since my husband has had that prognosis since that time.

However, once you call Hospice in, you don’t get any more “regular” health care. Everything basically goes through them. We didn’t call them in because that would mean no more “allopathic” treatments. For example, my husband wanted to do one more “last ditch” Radiation treatment to try to shrink the tumor, even though he’s been well within the “6 month window” for a while.

Hospice will not do IVs. Just so you know. Their reasoning is that the IV sort of “perks the patient up,” where Hospice is trying to get them to “slowly slide into oblivion” as it were. So the IV really is almost “cruel” to the system. I have a whole IV story, but all it really comes down to is I badgered Kaiser into giving him one even though he had “just entered” Hospice, and as he took 3 LITERS of fluid, I felt quite vindicated.

Hospice takes care of bringing you all the meds you need, and keeps track of all of that. 24/7, if there is any sort of an issue, there is a number that you call. However, I also learned (good for all of us to know!) that if you need “non-emergency fall assistance,” you can call 911, and tell them that it’s a non-emergency fall and you need help. They will send the fire department, no sirens, etc. to come and help you out. (Then you call Hospice so that they can come and be sure that the patient is okay.)

I’m kind of in love with our hospice gal. She looks EXACTLY LIKE Amanda Giese from Animal Planet’s “Amanda To The Rescue.” (Well, Amanda Giese with a face mask.)

I’m sure I will have more to say, but right now, I just wanted to draft up a rough blog post about all of this.

Long Term Care Insurance. About 9 years ago, my husband did EXHAUSTIVE research into Long Term Care Insurance. What LTCI does is to basically pay for approved things that Hospice won’t do. This past year, our premiums were $2,800 (hubby) and $2,200 (me).

For this, we receive (as of this year – it goes up each year as there is a 5% interest bump) $391.50/day in not only “nursing home” care, but also “in-home care by anyone not the spouse.” There is a 3 year cap, which means that the total payout of the policy right now is just under $430,000. (For each of us – we each have a policy.)

To be able to get the benefit, you need to be unable to do two of a list of things for yourself. These include things like transportation, walking, cooking/feeding yourself, toileting, showering, etc. As hubby cannot drive and cannot get into the shower those were our “two items.”

There is a 90 day “waiting period” to begin receiving your daily benefit unless you are in Hospice care, at which point the benefits start immediately. As long as one of the couple is using the benefit, the premiums are stopped for both policies. It is possible (I actually have an email in to our agent) that if my husband doesn’t use his whole policy, the rest of it “rolls over onto” my policy.

If you choose to use a home care provider “service,” obviously, easiest is to ensure that they are already approved by New York Life. If, however, you are going to use just “a person,” you can have NYL send you a form for that person, and they will approve them to be paid – so long as they are not the spouse. (So, for example, we had my mom approved by NYL, which means that if we so choose, we can have NYL pay us to have her come and sit with my husband – this is, of course, income to that person.) Generally how it works is you pay the provider, then NYL pays you back.

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What got me started on this blog post is our agent, Athena Webster. When we signed up for LTCI years ago after my husband did the research, I used a NYL Agent that I knew from a business networking group. She went out of the business probably 5 years or so ago, and so we have been “agent-less” as it were.

About six months ago, Athena called us, stating that we were an “orphan account,” and wondering whether we would like her to be our agent. We were in the middle of whatever health crisis was going on then, so I asked if she would call back in two months. She did. Then I asked her to call back two months later. Which was about 3 weeks ago. Then, I wanted to “tawk.”

We immediately had her assigned as our agent, and wow. She’s unbelievable. I can’t say enough about her. When we need to call New York Life, she makes the call, works through the telephone tree, then calls us back in a 3-way call. She even did a 4-way call with New York Life, us, and our palliative care doctor at Kaiser (huge shout-out to Dr. Damian as well) when NYL was stalling on starting our policy, because they said they “weren’t getting the right paperwork.” Dr. Damian’s assistant actually called me back and said that she’d never seen anything like it – in all her interactions with LTC insurance companies, that, with Athena’s guidance, this was “by far and away the #1.”

Right now, things are a little “spicy,” as one of my Crossfit coaches used to say. My husband can only stomach watermelon, green grapes, canned peaches, cherries, and Saltines. Even that is all a bit of a crap shoot (I could make a very “TMI” comment here about how that, also, is a problem but I will leave it to your imagination). The tumor on his chest/under his arm is the size of a good-sized pomelo. It pulls on his skin, so it’s sore to the touch (he can only wear immensely soft shirts). It pulls on all the nerves/muscles going down his arm, so he’s in constant pain without the morphine/gabapentin/fentanyl/oxy cocktail he has to take every 4 hours – which makes him sick. So he can’t eat. Catch-22.

Hospice has given us a new “cocktail” to take for the nausea, since nothing else has worked – and they are “determined” to get his stomach settled. Hubby is in and out, due to all the meds – but when he’s “in,” he is arguing about having the home health care. I’m sure we will get this settled soon, as I haven’t been able to leave the house for the last week, since he can’t really stand. I have called the home care service that was recommended both by Dr. Damian and New York Life – I need to call them back today.

My mom came and “spelled me” yesterday so I could get out and do some rowing/weights with my “Crossfit wife,” and have a therapy/bodywork appointment, which I am very grateful for.

Speaking of my Crossfit wife, at therapy yesterday, I had to “talk a bit through” how much she has done for me. She and her fiance spent all last weekend (6 hours/day) helping me stain a huge trellising system that my husband had not quite finished for an area by our hot tub. My best friend’s son (a contractor) is installing it (it’s 1/2 done as I type), and hubby was even able to get out there with a cane to walk through what he exactly wanted yesterday (which was a big relief to me, frankly – that he could still “have a hand” in the work). But back to my “wifie.” She has also input and done Excel “pivot tables” for all the 2019 medical expenses – we’re talking hours and hours of time. (about $106,000 worth of out-of-pocket receipts for 2019 so far.) She keeps me sane in our “jenga gym” we set up at her house with my husband’s equipment, my rowing machine, and equipment our Crossfit gym loaned out at the beginning of the shelter-in-place (for free – God bless you Ross Valley Crossfit.) She does all of my grocery shopping.

A year or so ago, she had cancer, and I feel like a heel in that she said that she had so many people signed up to check in her/give her rides/make her food/etc. that she was fine – and I just took her at her word. It’s not that she wasn’t fine – it’s just that I should have done something. As I talked about in therapy yesterday, I am feeling unbelievably guilty for this sort of help and for not having helped her, while on the other hand feeling selfish that I need to get out of the house and do something as “silly” as lifting weights and have help painting trellises and doing tax-things that hubby has always done for the last 20 years.

I’ve had folks send flowers, fold tarps, bring watermelon, send meal kits, bring face masks and silly things, 6 packs of Lagunitas IPA, you name it. I still feel guilty each time. I think because these are folks who are doing this “for me,” not “for my husband” per se. He has had his friends take him to doctor’s appointments, walk with him (when he could do that), and the like, which I am grateful for and appreciate. But I am at the same time thankful and guilty of the help I am receiving “for me.” My cousin even sent me a weighted blanket and some amazing herbal tea the other day (Note: Don’t crawl under a weighted blanket unless you want to wake up 2 hours later drooling and snoring…), a client sent dog toys for Winston, stuff like that. Maybe this is just a test showing that I’m not a narcissistic sociopath, since I feel very strongly that it’s not all about me! :-)

In my therapy sesh, when I talked about how guilty I felt especially at all the things my “wifie” is doing for me, he said that I had to realize that “giving” isn’t a bank account. That when you give and really give from your heart, you might not “get back” from the same person. He pointed out, however, that I have given him things (I hadn’t even remembered 1/2 of them – example? He wanted to try a didgeridoo, I happened to have one, and I gave it to him). He said that if I thought about it that way, that I was doing this sort of un-self-centered “giving” to others, and now I was receiving it, not from someone I had given to, but from some other corner. That it was like a big energy circle. And when giving is done in this way – just “what can I do to help – oh I know, I can fold that tarp!” – that the person giving doesn’t expect to be “paid back” (even if you yourself might keep a mental note), but the Universe will be sure that all the books are balanced.

I liked that. I’m not sure whether I have really had that sort of effect on folks, but I do know that I try to be that sort of person. And it seems like the Universe is balancing the books, these past weeks.