Thursday October 12 2023

No Stars In My Eyes · Oct 12, 2023

It's already the 12th of October???? Yikes! It is a very GROGGY morning for me. Off and on rain and sun, supposed to be around 70 degrees. I am drinking my coffee and trying to feel human.

The dgt texted me this morning and said she was almost at the hospital, that she can only come see him on her days off. She said (in the text) that she would try to get over here to sit with Nannie and Momo so I could go over to the hospital to see him.Then when I answered her text she sent me back a message that said she would call e later because "they are putting in a pig-tail now." She also said that although he was still confused at times, and hallucinating , ie--"he handed me a cigarette twice, to put it out for him." .

To tell you the truth, I don't really feel like going to the hospital, but if she comes over, I probably will. It's not that I don't want to see him, it's just that I am so tired. I wouldn't mind having another day without anyone around. An awful time to feel that way, since people are coming out of the woods to offer help. SiL is coming on Monday so I can go get my nails done and just be off-duty and out of the house. The fact that I don't trust either SiL or the dgt to not go poking around here, well, I just have to deal with it.

Last night the NP called and said he was restless and his breathing was quite junky, so they had to suction him and got out a LOT of crud. He's probably going to be in there another 4-5 days.....only an estimate, as it is day-to-day, since his various conditions seem to take turns getting lousy and better. The dgt said the PT folks had him doing a side-ways shuffle this morning.

All for now.

Editorial Team / Admin · Oct 12, 2023

Hello all!

Congratulations to nursej22, Master Gardener! Do your research on the e-bikes, get one with good brakes! Some of our friends LOVE their e-bikes!

Joe, I read a summary of Demon Copperhead. It sounds like a very dark book, something I wouldn't like. It would be interesting, though, to be a fly on the wall at your book club's discussion of it! Do you get a new book every month?

Prayers for you and for Mr. Stars continue, NSIME!

We went to Disneyland yesterday, at dh's request, for his birthday. We went dressed dapper, and had a really nice day walking around, listening to bands and people-watching. ? Visited with a few ppl at the parks, who came up to ask us about our dapper dress. We had supper at the River Belle restaurant, near New Orleans square. Dh initiated conversation with the man at the table next to us, as he was leaving. His accent had drawn dh's interest, and it turns out the man was a bar-owner from Northumberland, UK, somewhere near Newcastle. He had the most interesting accent! We chatted for a bit, then his daughter (waiting outside the restaurant with Mum) hollered for him, and he left. Well, it turns out he paid for our supper! Such a nice gesture! We didn't even get his name...

It was perfect weather for the parks, and we enjoyed being outside. It seems my smart watch and my smart phone have a wide discrepancy of what steps we took and how many miles we walked!

Phone: 13,400 steps, 4.76 miles

Watch: 14,700 steps, 6.61 miles

I'll take the watch's! After supper we walked through Downtown Disney and back to the parking structure. Cruised through the Lego store. We were quite impressed by the many items available to be assembled -- by adults, even! Take a look online, it was quite eye-opening (and expensive)! We toyed with the idea of getting the ds's and dil something to assemble, but balked when trying to decide exactly WHAT to get them (Christmas in mind). Decided to give them cash, so they can get their own, LOL!

Today is post-Disney Recovery Day!

Have a good day/evening!

No Stars In My Eyes · Oct 12, 2023

Another call from the NP at the hospital. They were asking about putting the picc-line back in. She said she got the idea from Palliative care that I was wanting 'aggressive treatment', but I said, basically I didn't want him to suffer, but I knew I didn't want him (and he wouldn't want it himself) to spend months in the hospital with them putting out all the little fires that occur and recur. He has so many things wrong that improve and then fall again. For instance, his 02 sat went down to 80 when the PT put him back in bed; he is still needing to be suctioned a good bit, he is back to being NPO. His mentation is clearer, some of the time. I said I wanted to talk with palliative care again and also talk with our PCP about where we are right now. Wondering what is the point at which the decision is made to step down this 'aggressive' care and easing him down to hospice....But I didn't know that palliative care was considered aggressive treatment.

I know his dgt has been reading the things I sent her to read on line; she asked me what stage I thought he was in. I said the 3rd stage. I think she has a better understanding of how serious his condition is. But , then again, she said that today, it seemed to her like she had her "old Daddy back again." But what she wants to happen and what might happen are still two different ends of the line. It may come to me being the Wicked Step-Mother when all is said and done. Ah, me...........

No Stars In My Eyes · Oct 12, 2023

I spoke with the dgt by phone, and she says she understands he is not going to get better, and that treating symptoms as they arise is really only trying to extend his life without any hope of a cure for any of his multiple disease processes; so there's a bit of weight off my shoulders. I am going to meet with the NP who works with our PCP at 11 AM tomorrow and we are going to call the dgt and have her on speaker phone. I seriously think it is time to have Hospice on board. I will go over to see him about an hour before the NP comes up to his room for our conference. Anyway, that's where things stand currently.

toomuchbaloney · Oct 12, 2023

No Stars In My Eyes said:

I spoke with the dgt by phone, and she says she understands he is not going to get better, and that treating symptoms as they arise is really only trying to extend his life without any hope of a cure for any of his multiple disease processes; so there's a bit of weight off my shoulders. I am going to meet with the NP who works with our PCP at 11 AM tomorrow and we are going to call the dgt and have her on speaker phone. I seriously think it is time to have Hospice on board. I will go over to see him about an hour before the NP comes up to his room for our conference. Anyway, that's where things stand currently.

It's good to talk about Hospice at this point. Two physicians, one of them specializing in Hospice must agree that your husband is at end of life and that he only has 6 months or less of expected survival if they reduced his care to supportive only. He would be discharged home with visits from a health aid, social work and nursing. They only come for a short visits and not necessarily everyday.

I'm guessing that you are going to need help if he's coming back to your home. Lots of help.

nursej22, MSN, RN · Oct 12, 2023

TMB has some good points. It is imperative that discharge plans take into consideration that there is already a high needs family member in the home.

No Stars In My Eyes · Oct 12, 2023

Yeah/No, we can't have him at home because I can't take care of him and Nannie together, so it's either at the hospital, or a nursing home, or at a Hospice facility. Guess I'll find out tomorrow. Never even thought about a discharge planner arranging it, because I really don't think he'll last 2 days if all the treatments are discontinued. Seems dumb to transfer him elsewhere since he probably will check out soon anyway.

This sounds cold , but if he dies the same day his SS check is deposited, will I have to pay it back? I sent SS that question in an email just a minute ago. Not sure when I'll get an answer to that. I sure don't want to use the money from that check if it has to go back to SS. I am going to ask about me getting his SS check and giving up mine (which is less). But I suppose like all 'official' things like that would take a while to get done.

I hate having to think about all this stuff.

nursej22, MSN, RN · Oct 12, 2023

No Stars In My Eyes said:

This sounds cold , but if he dies the same day his SS check is deposited, will I have to pay it back? I sent SS that question in an email just a minute ago. Not sure when I'll get an answer to that. I sure don't want to use the money from that check if it has to go back to SS. I am going to ask about me getting his SS check and giving up mine (which is less). But I suppose like all 'official' things like that would take a while to get done.

I hate having to think about all this stuff.

I think you will be eligible for SS survivor benefits.

toomuchbaloney · Oct 12, 2023

We all hate to think about this stuff. We are not well prepared for one of us to need care in the home and we don't have insurance that would pay for something different. We still have too many property chores.

Still praying for you.

Tweety, BSN, RN · Oct 13, 2023

I think they've revised hospice admission standards and it doesn't have to be six months or left to live. We've admitted various patients to med-surg that have hospice on board.

Here one doctor can order hospice and they come evaluate and decide whether or not to admit them. Not a two-doctor thing but they have criteria to meet that must be documented, as well as family being on board. Probably works differently in different states.

Stars, it does sound like you have an understanding that palliative doesn't mean end of life comfort measures, it just means having an understanding that the underlying condition can't be cured, but like "DNR" doesn't mean "withdraw all treatment" neither does palliative. But interesting they presumed somehow you wanted to be "aggressive". I don't think things as a pig tail, TPN or paracentesis as aggressive. But you're right with him you put out one fire and another pops up.

I think having been his legal spouse over ten years you're entitled to some of his SSI, but that unfortunately a sad thing to think about and that does take time.

toomuchbaloney · Oct 13, 2023

Tweety said:

I think they've revised hospice admission standards and it doesn't have to be six months or left to live. We've admitted various patients to med-surg that have hospice on board.

Here one doctor can order hospice and they come evaluate and decide whether or not to admit them. Not a two-doctor thing but they have criteria to meet that must be documented, as well as family being on board. Probably works differently in different states.

Stars, it does sound like you have an understanding that palliative doesn't mean end of life comfort measures, it just means having an understanding that the underlying condition can't be cured, but like "DNR" doesn't mean "withdraw all treatment" neither does palliative. But interesting they presumed somehow you wanted to be "aggressive". I don't think things as a pig tail, TPN or paracentesis as aggressive. But you're right with him you put out one fire and another pops up.

I think having been his legal spouse over ten years you're entitled to some of his SSI, but that unfortunately a sad thing to think about and that does take time.

Yes. One doctor recommends and Hospice doctor agrees or doesn't. Yes, patients with hospice can be hospitalized for care that isn't directly related to the terminal diagnosis or for palliative treatment of the hospice condition. While there may be some differences in payment by private insurers, CMS has created the standards for hospice care that all hospice providers follow.

Some hospice patients in some hospice settings may have TPN provided, but that would be based upon the capabilities of the hospice and the plan of care that is agreed upon. Paracentesis is usually done for comfort as all treatment becomes focused upon quality of life rather than quantity.

NSIME, social security is supposed to have a survivors benefit for spouses and parents. According to the website;

Quote

These are examples of the benefits that survivors may receive:

Surviving spouse, full retirement age or older — 100% of the deceased worker's benefit amount.

Surviving spouse, age 60 — through full retirement age — 71½ to 99% of the deceased worker's basic amount.

Dependent parent(s) of the deceased worker, age 62 or older receive:

One surviving parent — 82½%.

https://www.ssa.gov/benefits/survivors/ifyou.html#:~:text=These are examples of the,the deceased worker's basic amount.