9-28-2022 Linda has been discharged from hospice
(Tricia)
Linda's assigned hospice nurse called me last week to let me know that they had reviewed Linda's status, and determined that insurance would no longer pay for hospice care. Yesterday was her official discharge date. Now, it seems, we're on our own.
I have been trying to get a new care plan in place as quickly as possible. I have asked her primary care physician to submit orders to the medical equipment company, which will in turn submit a request for insurance coverage to Anthem. Linda's plan should cover 80% of whatever equipment is approved. The doctor told me that the bed, wheelchair, oxygen concentrator, and Hoyer lift should be approved, but the Broda chair (which we have not used in a while anyway), bedside table, and low-air-loss mattress for pressure ulcers will not be. In its typical backwards-thinking fashion, insurance will not pay for equipment to prevent pressure ulcers. Only to treat them once they've reached Stage III or Stage IV. It's all just so stupid.
The equipment company will come to pick up Broda chair and bedside table this Friday. Fingers crossed that insurance will cover 80% of the rest. The full cost of renting the bed alone is $725 each month, which astounded me. If we had to pay that entire amount for two months, we would be better off buying a new hospital bed! And we are looking at the second-hand market for both the hospital bed and Hoyer lift, just in case.
I also have asked the doctor to submit a referral to St. Luke's Home Health Services, to see if we can finally get Linda's PT (and perhaps OT and speech therapy) covered under insurance.
Linda has been getting up in her wheelchair for a few hours every day, and she has been continuing private-pay physical therapy every Tuesday and Thursday. This past Tuesday, the caregiver and PT lifted Linda into a standing position while Ed held the bar we've been using for her to hold onto in front of her. They got her up six times before she finally had had enough! But the good news is that she was willing, so that was good. She says she cannot straighten her left knee, and we don't know quite why--whether it's real or anticipated pain, we're not sure. So the fact that she is keeping her legs bent really affects her balance. But this was the first time we really had her standing up like that. The PT was optimistic that she would continue to improve and gain confidence with practice.
It is going to be strange not to have the support of the on-call hospice staff--it's a little unnerving, to say the least. But I'm hoping that their support will no longer be necessary. Now, I also need to make an appointment with the primary care physician to have the drain in Linda's right side removed--the doctors at St. Mary's Hospital were adamant that the drain was necessary to remove any fluid that might return around her lungs. But we haven't had to use it once. We have, however, had to change the dressing out each week, which has been difficult to remember! It will be nice when it's finally removed, because that will mean one less thing to have to keep track of.
Linda continues to have times when she remembers more and times when she remembers less. For some reason, she gets especially confused around 5:00 p.m.--that's when she starts asking for Mother or forgetting she's in St. Louis with Ed and me. We would think it would be similar to "sundowning" that affects dementia patients, but with Linda, it clears up in an hour or two. I think she just gets tired and loses track of things. Once she gets her second wind, it's as if her brain "reboots" and she's back with us again.
I cannot even imagine what it would be like to have my reality constantly shifting like that. At times, she is obviously in distress that the world around her isn't conforming to the world as she wants or thinks it be. We try our best to keep her calm, but for the most part, we just have to wait for the mood to pass and for her brain to come back to center again (or as close to center as possible).
Marilyn continues to come over to see Linda when she can. We have had a few lunches, which have been fun. Last Friday, the two of us even managed to get out for breakfast, and that was especially nice. I hope to be able to do that a bit more in the future--if things ever settle down!
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