Thursday October 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.

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...........

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.

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. 

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.

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. 

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. 

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.  

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.  

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.

toomuchbaloney said:

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;

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

Thanks for the clarification.  I took it you meant two doctors have to make the terminal diagnosis prior to consulting hospice.  But yes, there obviously has to be an accepting MD at hospice, same as with SNF, rehab or any continuity of care.  Here representatives from hospice analyze the patient, diagnosis, and talk to the family and make the recommendation to accept the patient or not.  Kind of like when I went to a new MD recently and called to make an appointment, the staff basically accepted me and told the doc she was getting a new patient at such and such a time.  The Hospice nurses accept the patient and tell the doctor.  But they don't have to have six months or less to live.  

We do have a separate palliative team that includes an MD that will sometimes adjust pain medications and make other recommendations.