I am so sorry this is happening to your family. I don’t have any additional advice other than we found it useful to keep a written log of every phone call or email – date, person contacted, results, action items. My dad’s policyholdes were very poor at consistency so it helped to say things like "we submitted that on [date] " but even so, there was a lot of us nagging and pushing back. Never assume that what one rep tells you is the absolute truth; get a second call or manager to confirm if something seems wrong. Hugs to you
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Glad to see this thread added to. Going through a lot with H including that we thought we were heading for hospice a few weeks ago. I just felt this was a more personal thread. But to add my situation, H mental clarity has improved but now there is much more uncertainty. So stressful.
I had commented on the retirement thread because our retirement plans would be altered if we had to pay, for instance, for skilled nursing facility or round clock help in home as well as take care of regular stuff. Basically doubles our expenses.
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Let the thread serve the purpose of helping or “sounding off” for anyone and everyone who is in the position of spousal caregiving. 
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That is wonderful that your plan covers family members as caregivers! I don’t know what city you are in, but when checking care.com, you might want to see if they can handle quick coverage if your person cancels or is sick or doesn’t show up.
So sorry you and @scmom12 are having to go through this.
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The LTC may also have referrals to caregivers/agencies. If you can get names of agencies, vet them for quality of care. We’re on the FLTCIP LTC plan, version 1.0.
I’m so sorry you and your H are on this hard road.
It was a rough night. He insisted on going to bed at 5:40 and then didn’t really go to sleep until 9:40. There were a series of clothes changes, bathroom visits, switching beds, nausea, etc.
At 1:25 AM he woke me up to move into my bed. (That’s fine). In the time it took me to go to the bathroom he didn’t get into bed. Finally he got in and stayed about 20 minutes. Then he had to find his flashlight. He told me he was going to another bedroom to throw up. Then we got him settled on the master bedroom floor, (He wanted to be low).
I woke up this morning, listening to him cough. He’d changed his clothes again during the night.
Trying to decide which doc to reach out to next. Pulmonologist or Infectious Disease for the cough? (He’s on a med for aspergillosis). Palliative for the anxiety? (It has to be anxiety that is making bedtime take four hours). I think the number of pills he’s on is messing with his stomach, especially since he eats so little — so it’s time to review those. Maybe with his internist. Atorvastatin seems unnecessary! Allergy meds? I’m going to give him the Valium at least 30 minutes before I give other meds tonight to see if we can have a calmer and more direct start to going to bed.
Here starts the day!
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Sending big big hugs! See if the palliative care team can coordinate care between all the specialists. You shouldn’t need to be making multiple calls.
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We have the 2.0 plan. Started premiums in 2002. I don’t know the differences. We have 90 day waiting period, and unlimited benefits.
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@Mom22039 If you have a Palliative care physician, absolute give them a call today! No need to chase other doctors when one can hopefully take the action needed. I know we were suppose to always go to the ER with any issues, as our oncologist was hands off, which was different than I was expecting. Whereas internist use to be the gatekeeper of care, that isn’t the case for those with a chronic illness; that is unless you have one that is fabulous and responsive. Usually they want you to defer to the oncologist or palliative care physician.
As you know, every patient is different, and every day/night is different. My husband would have a sleeping med and Ativan, sleep for 2-3 hours, and then be up the rest of the night. After no sleep for me for weeks on end, this is when I decided on evening care for him so I could sleep and be able to function the next day. I resisted care for so long, but the family insisted I do this, and I am sorry I didn’t do it sooner. While I was able to care for him full time, I was running on fumes the last couple of months, so sleep was a welcome gift; I wasn’t always able to sleep, but I knew he was being cared for, so at least I was in bed.
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Good morning. My husband died last night. The hospice nurse (at home) did the intake at 4:00, and he passed early in the evening. So, no need to activate the long term care.
Today we make decisions.
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@Mom22039 I’m so sorry for your loss.
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I’m so incredibly sorry! May his memory be a blessing and the love you shared sustain you through this very hard time. 
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Oh NOO! So very sorry for your loss 
So very sorry for your loss. Sending virtual hugs.
Heartfelt condolences. 
I’m so sorry. Please accept my genuine condolences. Hugs to you from a stranger.
I’m heartbroken for you @Mom22039 . Cyber hugs.
Peace to you and your family - ask for help where you need it. <3
I’m so very sorry @snowball
I hope you have a lot of love and support and happy memories. I apologize for the belated condolences.
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I am so sorry. Praying for peace for you and your family