Medicare Insanity

Spiky Bugger

Well-Known Member
He’s got another UTI, dammit. And again, isn’t all there.

All of my siblings and my niece are here this weekend. Perhaps the last time we’ll all be together with him. My sister and niece flew in from the East Coast and my brothers drove up from LA yesterday.

My kids and their significant others were all traveling to a wedding in Colorado, and in fact are in Las Vegas today on their way back to the Bay Area - so close (280 miles) and yet so far. ☹

View attachment 2626
I’ve mentioned this before, but…every time MY jaw would tighten, my voice got tense and I said something like, “I have to go, Mom. I’ll call you later,” MrSue would look at me and ask, “Time for Grandma to pee in a bottle, again?”

HE could diagnose HER UTIs by how stressed out I got talking to her. At the first sign of confused/cranky, we’d test. It was always positive.
 

hilary1617

First time at the rodeo.
I’ve mentioned this before, but…every time MY jaw would tighten, my voice got tense and I said something like, “I have to go, Mom. I’ll call you later,” MrSue would look at me and ask, “Time for Grandma to pee in a bottle, again?”

HE could diagnose HER UTIs by how stressed out I got talking to her. At the first sign of confused/cranky, we’d test. It was always positive.
So strange how UTI's cause behavioral changes, but confused/cranky is absolutely a "tell".
 

hilary1617

First time at the rodeo.
He’s ataxic, mumble-mouthed, sleeping too much, beyond confused. I’m not sure he realized who was visiting him, and even if he did, he doesn’t remember it.
It's so hard. I'm sorry. I hope the infection is wiped out and that he feels better soon.
 

DianaCox

Bad Cop
I’m sorry I didn’t keep up - things got hectic as Dad continued to deteriorate. I insisted on another urinalysis, which wasn’t done until Monday the 23rd, and the results didn’t come back until Friday the 27th, which was Charles and my 23rd anniversary. However, on Wednesday, the medical coordinator called to say that once again, he wasn’t improving or benefitting from PT, and he would have to leave, because Medicare wouldn’t cover his care at that level anymore. I protested that he was still waiting on the urinalysis results, and what if he needed IV ABX, which is what I was pressing for? I know perfectly well that I was told it didn’t matter, because he could get IV ABX from a once a day home health visit. (This was later disputed.)

In any case, he was in too bad of shape to come home - he couldn’t even stand anymore, couldn’t feed himself, was completely incontinent, and was lethargic. So I called in an appeal of a discharge order that hadn’t been formally given. That lit a fire.

But it was a multi drug resistant Klebsiella pneumoniae infection this time, requiring IV ABX, and they claimed that they had not told me what they told me. He wasn’t started on the IV ABX until Saturday.

Charles came with me to visit him on Saturday evening, and cried on the way out. Sunday, he couldn’t feed himself at all, and was not swallowing well. I took off on Monday, having had work to do for a change, and starting to investigate finding group homes for next week when he’d gotten 2 weeks of IV ABX.

Tuesday they called me and said he was having trouble breathing, and wasn’t eating or drinking. I told them to transfer him next door to the hospital. When I got down to meet him there, they wouldn’t let me in - strict Covid precautions were instituted.

He was a mess - I was following his labs on the patient portal. Severely dehydrated. Labs all over the place. But CXR was fine. I was afraid he would die on my younger brother’s birthday, but that evening, he rallied - the ER nurse told me he was able to talk a bit and understood he was in the hospital. But I know he had fears about being abandoned, when he wasn’t thinking clearly, and the fact that I couldn’t come in to see him and reassure him was making me crazy.

Wednesday, I visited 4 group homes, and thought one of them - only about 1 mile from our house - would be lovely. He remained lethargic per the doctors and nurses, barely rousable. He became even more apneic than usual, so his CPAP was put on most of the time.

Thursday, he continued to decline. Around 7:30 PM they called to tell me he probably wouldn’t make it through the night. Charles and I were given permission to come into the hospital to be with him.

I was talking to him and holding his hand. I didn’t see or feel a response, but at one point, Charles told me a tear slipped out of his eye. I hope that means he could hear or feel that we were there. He passed away about 20 minutes after we got there.
2640

I’m 68 years old. I’ve never seen a dead body before. I don’t go to funerals, because I can’t control my emotions - I get overly weepy and sobby. I didn’t go to see my mother during the days she was dying. But I did this. And as much as I hate everything about this, I’m glad I did.
 
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Spiky Bugger

Well-Known Member
I’m sorry I didn’t keep up - things got hectic as Dad continued to deteriorate. I insisted on another urinalysis, which wasn’t done until Monday the 23rd, and the results didn’t come back until Friday the 27th, which was Charles and my 23rd anniversary. However, on Wednesday, the medical coordinator called to say that once again, he wasn’t improving or benefitting from PT, and he would have to leave, because Medicare wouldn’t cover his care at that level anymore. I protested that he was still waiting on the urinalysis results, and what if he needed IV ABX, which is what I was pressing for? I know perfectly well that I was told it didn’t matter, because he could get IV ABX from a once a day home health visit. (This was later disputed.)

In any case, he was in too bad of shape to come home - he couldn’t even stand anymore, couldn’t feed himself, was completely incontinent, and was lethargic. So I called in an appeal of a discharge order that hadn’t been formally given. That lit a fire.

But it was a multi drug resistant Klebsiella pneumoniae infection this time, requiring IV ABX, and they claimed that they had not told me what they told me. He wasn’t started on the IV ABX until Saturday.

Charles came with me to visit him on Saturday evening, and cried on the way out. Sunday, he couldn’t feed himself at all, and was not swallowing well. I took off on Monday, having had work to do for a change, and starting to investigate finding group homes for next week when he’d gotten 2 weeks of IV ABX.

Tuesday they called me and said he was having trouble breathing, and wasn’t eating or drinking. I told them to transfer him next door to the hospital. When I got down to meet him there, they wouldn’t let me in - strict Covid precautions were instituted.

He was a mess - I was following his labs on the patient portal. Severely dehydrated. Labs all over the place. But CXR was fine. I was afraid he would die on my younger brother’s birthday, but that evening, he rallied - the ER nurse told me he was able to talk a bit and understood he was in the hospital. But I know he had fears about being abandoned, when he wasn’t thinking clearly, and the fact that I couldn’t come in to see him and reassure him was making me crazy.

Wednesday, I visited 4 group homes, and thought one of them - only about 2 mile from our house - would be lovely. He remained lethargic per the doctors and nurses, barely rousable. He became even more apneic than usual, so his CPAP was put on most of the time.

Thursday, he continued to decline. Around 7:30 PM they called to tell me he probably wouldn’t make it through the night. Charles and I were given permission to come into the hospital to be with him.

I was talking to him and holding his hand. I didn’t see or feel a response, but at one point, Charles told me a tear slipped out of his eye. I hope that means he could hear or feel that we were there. He passed away about 20 minutes after we got there.
View attachment 2640

I’m 68 years old. I’ve never seen a dead body before. I don’t go to funerals, because I can’t control my emotions - I get overly weepy and sobby. I didn’t go to see my mother during the days she was dying. But I did this. And as much as I hate everything about this, I’m glad I did.
May his memory be a blessing.
 

Susan in Tennessee

Well-Known Member
Diana, I’m so very sorry. You are a good daughter who did your very best for your wonderful father and he positively knew you were there. You, Charles and your family have my sincere condolences.
 

JackieOnLine

Moderator
Staff member
I am so sorry! I'd glad you could be with him at the end, and as much as possible all this time.

and there is no such thing as overly weepy.
:5grouphug:
 

Larra

Well-Known Member
Diana, I'm so very sorry! I remember meeting your dad at a Seder at your home in San Jose. He was a great guy and I know you loved him very much. I'm so glad you and Charles were able to (finally!) move him out to AZ and spend a lot of time with him before he passed.
Be sure to take care of yourself during this sad and difficult time.
 

southernlady

Administrator
Staff member
Diana, my heart breaks for you. Losing a parent is hard. Esp when you’ve lost both. I’m glad you were there and Charles as well, and helping you with this.
Grieve but also remember the good times.
 
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