This is the third note I found in Jay's father's files. It is an email that I sent to all of his family and friends. His father did not use email, so I sent him a printout of it.
If you might ever be faced with a decision as to whether to go with Hospice or not, read this.
This is only nine days after the previous letter.
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August 17, 2001
Dear Folks,
The past week has been very busy.
The insurance case-manager has been urging me to consider Hospice, but I didn't want to for a plethora of reasons: We'd had bad experiences with a local home nursing service. I'd been to a seminar where I got the impression that Hospice's main thrust was spiritual and emotional support (do-gooders, which I find more annoying than helpful). Jay considers Hospice giving up, and he won't give up, and I would feel like I was betraying him if I called in the "give-up team". Lastly, the only thing I could find in the insurance contract that seemed to even remotely relate to Hospice was under the heading "Home Nursing Care", and it explicitly stated that the insurance covered no services "that could be performed by a family member" - which meant that I wasn't going to get respite, bits of time off, from the insurance, just skilled nursing services, which I happened to enjoy doing for Jay anyway, so why repeat the bad visiting nurse experience for no reason.
But about two weeks ago I realized I was going to need some help soon. We will need a medically skilled sitter so I can get the vehicles inspected, a mammogram, a trip to the optometrist, the lawn mower fixed, some shopping beyond what's available for delivery, and so on. I also need advice on stuff like, for example, how to get medicine into him during those times when I can't get him to swallow the pills. (The regular doctor's nurses try to help by telephone, but they haven't seen Jay lately, and they don't really understand what we're dealing with.) There is only one place I am likely to find all this.
So I called Hospice and asked for an information packet.
Last Friday the insurance case manager called to ask how Jay was doing, and I told her I had made the call to Hospice but had not yet received anything. She said she'd nudge them. By that evening I had an appointment (here) with a Hospice nurse on the next Tuesday, and it's been a whirlwind since. The packet I had requested also arrived on Tuesday.
What I hadn't realized is that Hospice takes over entirely. On Tuesday the intake nurse told me that they have their own doctor who works in concert with our chosen doctors. They provide ALL the equipment - from the hospital bed and the oxygen concentrator to the mouth swabs and bed pads, and all the prescriptions. No more co-pays for meds or equipment, which is significant, because our share of the [reciprocating, pneumatic, to prevent bed sores] air mattress alone was $190 a month, and the oxygen concentrator was $150. Plus the Hoyer lift, wheelchair, overbed table, all the nits that were nickel-and-dime-ing us to distraction. The only co-pay is a flat $70 a week. We get a social worker who will find out all kinds of stuff for us, a nurse who comes twice a week to check and evaluate him, and is available for advice 24 hours, and an aide who will be here from 3:30 to 5:30 Monday through Friday. (My first thought when I heard that was "what on earth am I going to do with her for two hours every day?") I can leave when the aide is here. She can give him sponge baths, massage his back and feet, read to him, do his mouthcare, change the bed, and so on. If I need more time out, they will send a trained volunteer to sit with him. [Housekeeping assistance was also available. I could have a maid once a week! I turned that down.]
We are allowed a total of 271 days of care during periods when he is not getting aggressive treatment, and we can drop out and back in at any time - which means we could have used Hospice during the "rest periods" between treatments (but of course I'd have been afraid of using it up too soon.) Hospice doesn't "do" things like artificial feeding, for example, it's considered aggressive, but if we want something like that, we'd drop out for the day or two that it would take to get the IV or feeding tube or whatever, and then he'd come back in with the system in place, and they'd absorb and maintain it.
I expressed surprise because the insurance contract was so restrictive under "Home Health Care", and she said this is an entirely different contract, that I apparently don't have a copy of. (Huyh? Oh well, accept, don't look the gift horse....)
Wednesday the registered nurse came and examined him, took the history, gave advice, and set up delivery of everything. Even the meds are delivered to the door. Thursday the social worker and the aide came, and while the sw and I talked in the kitchen, the aide bathed Jay and handled two "accidents" resulting in laundry (she really moved right in and took over, nothing fazed her!) Today, Friday, I had an opportunity to talk with the aide while she massaged Jay's feet, and I think I won't be too nervous about leaving her alone here.
So, things are looking a lot more manageable.
M[youngest sister], I have returned all but two of the last set of library books on tape that you sent us. He is now working on "A Passion to Know...", which is thumbnail biographies of many famous scientists and Nobel Prize winners, with the stories of how they arrived at their great discoveries. It turns out to be the perfect book for him right now. The science is not so technical that he has to work to understand, and he can fall asleep, wake up later, and enjoy some more without having lost any plot. We can even play it over and over, and catch what he missed, or get more out of what he'd already heard. He's not communicating very well right now, but I can tell he likes it because he really does try to stay awake. Excellent choice!
[Silk]
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Again, this reminded me of things I had forgotten.
We had medical insurance through my retiree benefits from The Company. When Jay was first diagnosed, I realized that we had no information whatsoever on exactly what was covered under our insurance, and what was not. Medical care was fully funded by The Company, but was administered by a national health care insurance company. So who decided what was covered, and how much? The only information we had was about co-pays for doctor visits and prescriptions, things like that.
I called The Company HR and asked. Believe it or not, they didn't know. I asked for a copy of the contract, and was told that the contract was "in negotiation" and was not yet available. I pointed out that I was paying a portion of the premium, and had a right to know what I was paying for. Believe it or not again, it took a year to get it in writing what our coverage included, and as stated above, there was no mention of Hospice, the "separate contract".
Even though with Hospice I was able to get out of the bedroom for a few hours a day, it turned out that I was not able to go further than the village unless the twice-weekly nurse was able to extend her visit. One of the most dangerous things for Jay was seizures. If he started having seizures one after another in rapid succession, or a long extended seizure, it could kill him. So we had a syringe in the refrigerator filled with something-or-other which I would have to give him if he started seizing. It had to be given within ten minutes of the start. The aide was not allowed to inject him. Therefore I couldn't be more than 10 minutes from the house, so that if he started she could call me to come home and stop it. It was still a relief to be able to leave the bedroom, even if I couldn't get anything done.
As to Jay seeing Hospice as giving up, I explained the "drop in, drop out" aspect, and that satisfied him. It was just a temporary thing to help me.
He died at the end of October. He stopped fighting on 9/11/2001, when he realized he was unable to protect me, and slid rapidly after that.
.
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