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Whatsright, your H certainly faces some bad challenges. I hope they get answers soon. I also hope you manage to get some rest while he is hospitalized. He has great people taking care of him - and you need rest too.

Sending positive thoughts your way!

Sending good mojo your way. And echo that I hope you can get a good night sleep knowing your H is being taken care of.

Whatsright, how is your H today?

Well, his spasms / pain in his belly is better. They are giving him muscle relaxers (at my request…finally!) and pain meds right now.

Also, his blood pressure has been wacky again, but settling a bit. We should hear the results of the urine culture tomorrow and they can put in a picc line so we can get started with the bacteria specific antibiotics at home.

H and I had a rather long conversation last night regarding hospitals vs hospice. It was a really good conversation, really.

We ended up with this:

He wants to continue the antibiotics as long as there are any that can treat his infections. At the point where the bacteria is resistant to all antibiotics, we will call in hospice. Can’t get on board with hospice until that time, because that treatment is too aggressive for hospice parameters.

And I think there is a 60% chance I got all that right.

It’s very sad to have that conversation, but I’m very proud of us for being to be able to get through it together.

That was a very difficult and very critical conversation. I’m so glad you had it and that it went okay. You are so strong , even if you don’t feel like it. You really care.

@whatsright - I'm not quite sure why you haven't taken up the recommendation that you arrange for palliative care for your H. Several of us who are familiar with the challenges of chronic illness have indicated your H (AND you!) would be excellent examples of someone who needs it. It's sort of the in-between of nothing and hospice. It doesn't mean you can't go to the hospital if he gets sick again (after he recovers from his current infection). It's not a one and done deal, that if you choose it, you can't decide to then utilize hospice. They are two different protocols for care. And they will be of enormous support to you. Is it because you don't want someone coming into your home? That's understandable... many people feel that way, but 98% of people who have palliative care wonder why they didn't choose it earlier.

If/when he needs hospice care, the palliative care team will tell you to get an evaluation for that. People who offer palliative care have no incentive to keep someone on palliative care instead of referring them to hospice, and people who offer hospice will let you know if his condition does not qualify for hospice. You say you've had conversations with him about hospice care, but it's not like it's something you decide, "Oh, it's time for hospice care." You have to qualify after a thorough evaluation, and written orders from a physician who deems a patient has six months or less to live, given a normal trajectory of a disease/illness. A few patients outlive that six months, but can continue to stay on hospice if their condition continues to deteriorate as charted by the hospice staff. But the patient needs to be re-certified every 3-4 months based on that documentation. I don't know that repeated infections that land him in the hospital qualify for less than six months to live. That would fall under the umbrella of palliative care.

Really, while he's in the hospital, you should assertively tell them you want a palliative care consult before he leaves. Once he's on palliative care, visits will be as necessary as deemed by the team, not too much, and not enough. And it's not just a nurse. It's a team, including a social worker and chaplain if asked for. I guarantee you, no matter what you might be afraid of someone saying about your care of him, they've seen it all. And if you don't like what they say, you can fire them. There's no commitment to stay with them.

I'm sorry you are going through this, but the fact that you're in a bad place means you need support, and palliative care offers that in spades.

Thank you for that.

A couple of clarifications…

I don’t know for certain whether or not my husband will qualify for hospice at this time, but I am led to believe that he probably would. My niece who is a longtime hospice nurse, and now and administrator of three facilities in our general area tells me that she feels almost certain that he would qualify regarding the assessment that he is very likely to live less than six more months. And as you say, if he happened to live longer than the 6 months, he could be recertified (is that the right terminology?). My mom was in hospice almost one year prior to her death.

Also, I guess I didn’t make it clear a couple of messages ago, that we have been actively searching for a palliative care doctor. Our physician of 30 years has retired, and we do not want to stay with the doctor that has replaced him. He’s probably a good guy, but it’s just not a good fit. So my husband and I have been talking about palliative care, seriously for several months now. Even as far back as when he was in the hospital last May - September, I was looking for a palliative care doctor that would be our primary care physician. I contacted a man from my church who was a palliative care doctor in our town, based out of the local hospital. He explained that he was retired, but highly recommended the lady who had replaced him. I went the next day to her office at the hospital, and, although I never spoke with her, I called on the phone and spoke with receptionist type individuals in her office. I explained what we wanted. They made it clear they were indeed, palliative care, but they were not a primary care physician for anyone… They only provided services for people who are currently hospitalized. That was not what my husband and I were looking for.

Just yesterday and the day before, I have been searching for palliative care doctors near me. The closest near us are over 30 miles away. One of the main purposes of getting palliative care for my husband is so that he does not have to get out to go for doctor visits. Also, in my area, palliative care physicians are listed by location, AND specialty. I.e. pediatrics, certain types of cancers, etc. There are none listed for my husband’s specific concerns.

Also, I hope I have never given the impression that I don’t want people in my home or I don’t want people to know how I care for my husband. I’m actually proud of the care that I give him. And we currently have Home Health coming into our home on a regular basis…the nurse, social worker, OT, and PT. I absolutely have no problem with any caregivers coming into my home at a moments notice. Sure, there are times I have let his nails get too long, or I wish my house looked cleaner, of course, but I appreciate all visits, and this home health company is one that we are very pleased with.

* And speaking of healthcare providers, coming into my home… The occupational therapist came for the first time on Friday. We really liked her and she’s very enthusiastic about helping my husband with some daily living skills. Anyway, I have been doing some room by room, spring cleaning, and in almost every room, there is a boxful left of various items / papers that I need to go through. So, as I went through the house, and as we have a larger master bathroom for accessibility, I have just been putting those boxes of odds and ends into our master bath, so that when I was finished with all of the spring cleaning in the rest of the house, I could take care of that one room. Well, Friday, as the visit from the OT was almost over, she said, (you guessed it) "One more thing, if I could just, check out his shower area please."

Good Lord. 🥴

I told her that she absolutely could not go in there due to it looking like a messy storeroom of some kind. I was kidding, of course. We both laughed, and, of course she went in to inspect the area. She said something kind of like, "It looks like my bathroom too!". (And by the way, it’s still a mess, because we ended up going to the ER after his doctors appointment, directly after her visit.) 🙄

The nurse with our home health company has recommended us to a provider/group that has doctors, nurse practitioners, nurses, social workers, etc. and there are home visits. The NP comes to the home for check ups as well as other specific visits. I have an appointment with a social worker at the hospital tomorrow to set up a referral from the hospital to this particular group. Fingers crossed that our insurance is accepted by them and we can get that set up before my husband’s next check up.

And, in case you missed this news in another post, we are in the process of securing approval to have my H’s sister come for a yet to be determined numbers of hours per week to be a caregiver for my H so I can run errands / grocery shop / and even spend some time with friends. She could use the money, I could use the breaks, and they enjoy each others company.

I think we’re doing OK. We’re trying to take things on as they come up. I was very proud that we could have such a good conversation last night regarding future considerations, including this new physician, and at some point, hospice.

I appreciate all the support here, and y’all letting me vent!

[This message edited by WhatsRight at 8:42 AM, Tuesday, March 21st]

So…some bad news today.

The infectious disease doctor came today and said that even though there was Klebcilia in his culture, there was also Morganella. That looking back, he has had Morganella in every culture since last year.

She thinks that, because his CT doesn’t show a bad looking bladder, that she wonders if it has colonized in the prostrate or colon. Said that although she hated to put people on antibiotics, she thought she might try to put him on IV meds for 6 weeks instead of 2 weeks, to try to get rid of it completely. But then there is cDiff and increased resistance. She asked a million questions about H’s health and asked us to give her a day or two to get with H’s urologist and see what they could come up with.

My H came out and asked how much longer he would live. She played that down and seemed to just want to try to figure out what would be best. We told her H was ready to fight it until there is nothing more to do.

She said she was sick of seeing him in the hospital and would do whatever she could to keep him "away from here".

So we wait. Hopefully in the next day or so we will get some ideas on how to proceed.

[This message edited by WhatsRight at 1:48 AM, Wednesday, March 22nd]

I am so sorry he is having such a difficult time. It sounds like this doctor really wants to help.

I hope you are going home to sleep and rest at night - so you can be strong enough to face what is ahead.

Thinking of you ~~~~~~~~~~~

((((WR))))

Are you in a different hospital this time? I remember you saying something about that last time to try the other hospital.

I hope you get some answers soon.

Well, things can change quickly.

We actually came home last night.

The infectious disease doctor came back and said that she had determined that she did not want to go the route of extended antibiotics. I will infuse it at home for about a week at which time, she will put him on a maintenance dose once a week of an antibiotic I cannot pronounce. She says that she has done this in the past with some kidney transplant individuals who have an issue with recurrent UTIs, and it has worked very well to keep them stable for long periods of time. We really like this infectious disease doctor. She is very thorough and listens when we tell her things. And she’s a person, not just a doctor. (And I mean no disrespect to doctors in general with that comment.)

So, we came home yesterday afternoon. Since his blood pressure was wacky again this hospital visit, we have a prescription for BP meds.

We did find out that we would be able to have home health and palliative care at the same time. We have been referred to a palliative care practice that services our area. We are also arranging to get a new PCP that comes to the home.

I certainly hate that he has had to suffer another infection at this time, but the results have been that I think we are in a better position to manage the things as they come in the future.

Thanks for all your posts of concern.

They made it clear they were indeed, palliative care, but they were not a primary care physician for anyone…

That's always how I've seen palliative care (same with hospice). Their doctors are not your primary doctor; in fact, in hospice, you don't even have to have a primary doctor to sign up. The physicians that oversee palliative and hospice care patients within an agency mostly just do that, and that is their full-time job. There are a few very tiny hospice and palliative care agencies that might offer that, but it's not the norm, at least in the Midwest it wasn't. But if you choose palliative care, those are the people who are going to be more hands on, so you should be more concerned about that agency, and that fit, than you do a primary care physician right now. Sign up with the physician that isn't a good fit right now (or hopefully this new clinic), and get palliative care services started. The bad fit doc is not the person who will be the hands on person in your home. Then when palliative care starts, ask them for referrals to a primary care physician that will be a good fit if you haven't found one.

But you don't do anyone any favors by delaying the palliative care. Not sure why, but I seem to think you live in an area that you think may not have the resources you need. Hospice and palliative care workers travel quite a distance. When I worked in hospice, our agency covered a six-county area in the Chicago suburbs. So we did a lot of driving. Home health is great, and some of that will likely continue after he is on palliative care, but they are not palliative care. Since home health is giving you a referral to another clinic, ask them for a referral to a palliative care group. I think what's difficult to see is that they can all work hand-in-hand. What can easily happen is, you find a palliative care agency that you like, and they work in consultation with a physician that is familiar with your husband's condition. You (or the hospital social worker) need to make some phone calls to these agencies, and not go by just what they say on a website or on a brochure. The hospice agency I worked for was known for its pediatric program, but its adult program was the second largest in our metropolitan area. So I would hate for someone to see the website and think it was only for pediatrics.

Again, just having conversations with these people doesn't commit you to anything. Even signing up doesn't commit you to anything. People will, and do, fire agencies and bring on new ones. A year ago, a dear cousin was on hospice for pancreatic cancer, and was getting horrible care. I told her to call around and find another agency. Once they did, they were so glad because the new agency provided what hospice care is supposed to be, and they were awesome. Same goes with palliative care.

I really hope the hospital social worker steps up to the plate and helps you get this all in place asap.

The palliative care doctor at the hospital that I referred to previously does not see patients unless they are in the hospital at the time. That is why we have been looking for palliative care on an outpatient basis.

We are not delaying the palliative care. You may have missed a post that I made regarding my husband and I having a conversation about where to proceed from here. And he has arrived at a place where he is comfortable with securing palliative care. There is no way I was going to try to force it on him.

The hospital case manager has now made the referral. They have let us know that it may be next week before the palliative care agency gets in touch.

The problem we have with the PCP we now have is that he is an unknown to us, seeing how my husband has only seen him once since the retirement of our 30 year PCP. And on that one visit he declined to allow my husband to go from one 5 mg diazepam per day to “1 - 2 5 mg diazepam per day”. This was the prescription he had before, until I notified our previous doctor to reduce the prescription because at that time H didn’t need 2 a day, and I didn’t like the idea of stockpiling the meds. But the new doctor overlooked that responsible handling on my part of those meds and refused to return to the previous prescription, when my H needed it.

It was just a feeling we had about him not listening to our concerns. And since normally, a PCP is not readily familiar with the daily living challenges of a spinal cord injured person, especially one who has been injured for so long (49 years) we don’t feel comfortable with him being in charge of H’s health. Since we’re going to have a “new PCP” anyway, it might, as will be someone who comes to our home… Even if all other things are equal.

I appreciate your concern. But this process is not about me. It is about my husband and his readiness to move through steps that are on a downhill trajectory. It is not been my wish to force anything on him. And I think my approach has been productive, in that he is now "ready" and feels good about this next step rather than apprehensive and out of control.

I understand and so appreciate the concern that has been expressed regarding MY situation. But my situation is secondary to that of my husband. And at this time, at least, he’s the one whose health is failing. He is the one who is facing having less and less control over his own life.

I am making efforts to lightening my load. I am in the process of arranging for his sister to come in to give me a "break" from time to time. This has been in the works for some time but it’s now recently coming together. (Due to her moving back here.). We are awaiting a call from the palliative care doctor, and we are in the process of arranging a PCP / NP who will come to the home. I feel like we are handling things ok.

When I post here, it is very comforting for you all to express support for me. But, ultimately, I must consider that this situation is primarily about my husband, not me. And I am trying to navigate this process the best way I know, which includes moving at a rate that my husband is comfortable with.

If my H proceeds me in death, there will be plenty of time for me to rest then.

Thanks again for your concern.

[This message edited by WhatsRight at 9:16 PM, Thursday, March 23rd]

Whatsright, I am glad you and H are home. Hospitals have a way of really tiring everyone out.

It sounds as if you are making good progress towards his care and that will be so helpful.

Thanks!

You know, that is so true about hospitals. Even though you don’t feel like you were doing anything while you’re there, it is very tiring. We have both been quite lazy today. 🙂

So glad you guys are home, and I do think getting you a PCP that does home visits for your H is essential at this point. It's going to improve quality of care, and hopefully allow you to get better faster care.
I currently have 2 pt's that live at home, and have serious medical needs, and on vents, etc. They too have a PCP that does home visits, HHC in place for wound prevention, and management of getting labs, and ua's on a regular basis to prevent hospitalizations. We have a routines in place where they call me or the HHC RN when things are not going right, we get the tests ordered, and treatments going. We have been able to keep them out of the hospital for quite some time with this support system in place.

Tush, that sounds ideal!

We are working toward that same situation.

I really like the idea of routine UAs. We have been just letting dr know when H has symptoms. Dr says he doesn’t want to treat or test routinely without significant symptoms. But with this infectious disease Dr on board, that will change.

After 4-5 more days we will begin (I think) a monthly maintenance antibiotic.
ID doc says she has had good results with some patients with recurring UTIs.

Tush, that sounds ideal!

We are working toward that same situation.

I really like the idea of routine UAs. We have been just letting dr know when H has symptoms. Dr says he doesn’t want to treat or test routinely without significant symptoms. But with this infectious disease Dr on board, that will change.

After 4-5 more days we will begin (I think) a monthly maintenance antibiotic.
ID doc says she has had good results with some patients with recurring UTIs.

🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏