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To tell the truth, I have never had a really high opinion of myself. Think I’m at an all time low.

I’m questioning everything, and I think that can be a heads up to faulty thinking. I can’t be wrong about everything, right?

At this point, my husband’s PCP is a nurse practitioner that comes to the home. She came today, and it was a really upsetting visit. A few weeks ago my husband asked that they do a urine analysis/bloodwork because he felt strongly that he had a UTI. She reluctantly placed the order. We were told by his home health nurse that everything was normal, with the exception of a low platelet count (which is an ongoing issue for him).

My husband thought that he had a UTI because of severe abdominal pain. Throughout his life, after his spinal cord injury, he has had an uncanny ability to "perceive" the onset of a UTI. But now that he is less healthy, and has so much more abdominal pain that we believe is nerve pain, it’s harder for him to know which pain is which.

Today the nurse practitioner asked him how much he had been up lately. He told her that he has not been up. That his abdominal pain is so severe that he cannot get up. She seemed very short with him. I won’t bore you with the entire conversation, but she threw hospice at him, and it seemed very harsh to me. He was sobbing by the time she got finished. I don’t think she was really trying to be hurtful, but I think it was over the top.

She also chastised me for taking his blood pressure too often. The new neurologist, specializing in spine cord injury, has told me that when my husband‘s blood pressure is at a certain level, I should apply Nitro-Bid, a paste on his chest that will reduce his blood pressure. And that I should take his blood pressure every two minutes after that until it begins to come down. Today the NP told us that she strongly disagreed with that woman’s plan of care. That I was not qualified to administer the nitro paste, and that taking H’s bp too often was unproductive and that I was actually making his bp higher. I guess due to my anxiety.

She left saying that instead of hospice, she would call palliative care into our situation. She said she would allow him to take two pain pills a day instead of just one, but only if he was using the second one to get up out of the bed. That otherwise, that would be hospice.

I called our home health nurse after she left. I wanted to get her perspective. We have really loved his home health nurse and she has been very helpful. But in the last month or so it feels to me like she has backed away from us. She doesn’t answer my texts or my phone calls until days later, and sometimes not at all. Maybe that’s the way it supposed to be with home health. Or maybe am I just imagining that our relationship with her has changed?

I have always thought that when you go to a specialist, that you heed their instructions perhaps more than a primary care physician because they have more advanced training in their area. But our nurse practitioner who is his PCP (and a former neurology ICU nurse) has told us that she does not agree with the neurologist’s plan of care for my husband. So if we accept the NP advice, when we see the neurologist again, and she asks about my use of the nitro paste, I don’t know what to tell her. Because if I say that we have decided not to use it, what happens then?

After the nurse practitioner left today, I guess she had convinced my husband that he needed to turn to his other side no matter what pain was involved because he needed to move. She believes his abdominal pain is coming from internal contractures from immobility. My husband hasn't "allowed" me to turn him for a week to 10 days. So when I turned him completely on his opposite side today, I found one of the puppy dogs toys underneath his side. It was a tennis ball. When I removed it, it left a concave place in his hip That has scared me so bad. We have been married for 35 years and he has never gotten a pressure sore under my care. Only from going to the hospital. And that was on his heels. But this is bad. So I called the home health nurse and left a message for her. But she won’t get back in touch with me.

This area is bruised but there is no broken skin at this point. I have him on his side with a wedge enough that there is no pressure on the area. I’m scared to death. I am riddled with guilt. I’m at a loss for knowing what to do. I have promised my husband, short of an overt act to help him end his life, that I will abide by his wishes. So I haven’t "forced" him to roll from side to side when he says he doesn’t want to. So I don’t even know how the toy got under him, but I know that I missed it because I have not turned him. Because he didn’t want me to.

We talk about how we are going to handle certain things, we agree on the process. That he needs to turn, that he needs to get up, etc. But when it comes down to it sometimes, he will say that he’s simply not able to because of the pain. But this is ultimately my fault. I don’t know how bad this pressure sore is going to turn out to be, but it has the potential to be life-threatening I believe.

Everything is in such a bad place right now. My sons at home don’t speak to me anymore unless I speak to them. I’m getting a weird vibe from my son who is incarcerated. So many things are going wrong and I’m beginning to question my ability to discern situation‘s probably. I only share this kind of information with my sister, and one very dear friend. And I feel guilty when I do that, I feel like I am being disloyal to my husband. I have to admit I sometimes feel the same way when I vent to you all, but since you don’t know him, I have told myself it is somehow less disloyal.

Although it may sound like it, don’t mean to be asking you solve any of this mess. I think I might just be looking for your opinion about whether my perceptions about what is going on around me is just perhaps a shitty part of my life, or if I’m somehow perceiving things wrong.

Unill recently, sometimes it felt like my only consolation for quite some time it has been my beloved Maggie. And now that she is gone, I guess I’m feeling things more deeply. I just don’t know.

That’s the problem, I just don’t know. And I don’t know how to find out.

[This message edited by WhatsRight at 9:46 AM, Saturday, November 18th]

WR, from this distance, your WH is being uncooperative in his own care, so I can see why his health care people may be getting short with him. And I can see why you feel this way: you are shouldering 100% of the load for his personal well being. And he is okay with that.

A doctor once told me, about my difficult patient dad, that "Your father is not helping himself, either." I guess the question about caregiving becomes 'what is the limit of your responsibility, and what is his?' Much to think about. You are making sense to me. I couldn't begin to handle what you already are dealing with.

I agree with Superesse. I have a few questions:

1) What happened to your H's pain when the tennis ball was removed?

2) Why call the nurse about a conflict between advice from PCP and neurologist?

3) What does your H's neurologist say about the PCP's comments?

IDK ... I'd get the PCP and the neurologist on the same page before doing anything else.

I'm really sorry you're going through this.

I am so sorry for everything you and your H are going through. You are a great caregiver and advocate for him. Navigating and advocating the medical establishment is such a hard full time job, it's a lonely job, its a thankless job. With that said, please don't let guilt creep in, I know its easier said than done but I understand what you are saying, we are in a major health crisis and medical battle for our Son, its daily heartbreak and those closest to us don't get it, including Dr and Nurses, they can be cruel and insensitive, is it on purpose or just my perception? Not sure but it requires extra stress and processing. It's better to only confide in a couple of trusted people that will listen and not try to solve anything. I wish you and your H the best.

You cannot be responsible for your husband not doing best practices for his condition. You can’t agree to follow his lead on his care AND ALSO be responsible when it has a less than optimal results. So let that guilt go. And now you know to check for something like that if he is in unexplained pain later. (Make up that you have to change the sheets or something so that he HAS to roll over.)

As for venting - that 100% is not a betrayal to your H. It is you, the caregiver, being human and needing a way to take care of your own emotional and mental health so you can take care of him. You MUST allow yourself to do whatever you need to do to provide stress relief. ESPECIALLY when you have so much going on and have just lost your beloved pup. You are HUMAN. You have needs.

A number of years ago my BFF’s dad was in bad health. He had heart issues and never took care of himself- overweight, smoked, ate crap food, no exercise, etc. Her mom was, like you, the ultimate caretaker. She moved mountains for him, the way you do. And when he ended up at his end of life, mom ignored that growing cough she had been having for a few weeks. He ended up in the hospital critically ill, and the docs took one look at her and admitted her with pneumonia. He died Friday night, she died Sunday. Same hospital, different floors. The caretakers MUST take care of themselves. My BFF lived a few states away and raced to be with them, but it was too late. Please please take care of you- mentally, emotionally, physically. Your sanity and comfort and basic thriving is every bit as important as your husband’s.

(And I see you as an absolute rockstar human. I cannot name many people who would choose to live with a severely differently abled husband (and esp. after his As), adopt special needs kids and support them come hell or high water, adore animals, and dote on grand children. And you have a fun sense of humor. YOU are amazing and kind and a truly stellar human. Please tell your inner critic to shut the hell up. Your inner critic is wrong. Very wrong.)

WR, I helped take care of my disabled mom who was confined to a wheel chair for fifteen years. Not even close to what you do. It's hard mentally and physically. You do a fantastic job. I can't imagine what you or your husband go through on a daily basis.

I also second everything Tanner said.

Y’all are too kind. Truly.

I totally get that the nurse practitioner brought up hospice. It was just her demeanor like she was trying to find a way to force him to make different choices. On top of his physical pain, I thought she put him through some emotional turmoil that that was not necessary.

Excellent questions sisoon:
- his pain did not really change all that much after I removed the toy from underneath him. Pressure sores really hurt. So I’m guessing whatever pain he had from the ball became the pain of the pressure sore itself. He doesn’t have complete feeling, of course, but I didn’t notice a difference in the pain level
- The home health nurse has become a real touchstone for us. I wanted to know where she stood between the two health care providers. I thought maybe she could give me a perspective that I hadn’t considered. After I found the ball underneath him, of course I was going to ask her about that. Of the main things she does for her home health company is dealing with the clients with pressure sores.
- we have not spoken to the neurologist about this… The PCP nurse practitioner was here on Friday. We did explain to the neurologist about the nurse practitioners opinion of my husband‘s blood pressure issues at our initial appointment. And she disagreed. So it is clear that they do not agree.

…you are shouldering 100% of the load for his personal well being. And he is okay with that.

I appreciate this. Not so much because it is supportive of me, it very much is… But because this is something I can share with my husband. I believe it is an approach that he would understand. Because he does not want to lose control. Maybe this would give him a different perspective and ownership of the situation.

Tanner, I’m so sorry to hear that you all are facing a health crisis with your son. I absolutely understand that sometimes healthcare providers have to be stoic and distanced or they would burn out with all the grief they must face in their profession. But that doesn’t help us on an individual basis, does it? Many prayers for you and your family.

Please tell your inner critic to shut the hell up.

Thank you for this…it made me laugh!

It has been a relatively shitty month or two. For some reason my sons are avoiding me. Part of me thinks they are just being mean. Part of me wonders if during the last couple of weeks they have been so freaked out about my grief over losing my Maggie girl that they don’t know how to approach me. Her death has impacted me more than any other pet loss I have ever experienced. And there have been many. Her older sister, April, a beagle/border collie, I think is trying to take her place. She is paying more attention lately, and has taken to sleeping at my feet of the couch like Maggie did. It is bitter sweet. It also makes me wonder if she has been hurt by the extra closeness Maggie and I shared. One more thing to worry about.

The only negative thing I have ever noticed about this site, Is that we rarely share positive information about our "offenders". Of course, the pain here is so strong just trying to keep our heads above water. But please let me share just a small bit about admirable qualities of my husband.My husband broke his neck at age 16. With a loss of function/movement from his armpits down, including the lower half going down each arm,he finished high school, graduated from college, started a business, and competed in numerous sports on national, international, and Olympic levels. We married, and he was of course right there with me for the adoption of our boys. I want y’all to know how amazing he has been - in addition to … well, you know. He is not the sum total of how he erred in our marriage. I just want you all to know that there is much more to him than just the mistakes he has made. It’s the least that I can do, to tell you all of this, seeing how many times I have let loose about his shortcomings.

And now that he finds himself so helpless and suffering, I have of course chosen to be by his side.

Thank you Mangled Heart and Deeply Scared for this site. And for the help that it has given me and everyone else. And, by the way, thanks so much for the "Off Topic" forum. When I first came here I never realized how needed it is and how helpful it can be.

You all are my touchstone. ❤️

This is nonsense. Tell your NP to speak with the specialist of she has issues with their plan of care or to come up with a better solution.
Also you can't force a cognizant adult to do anything they don't want to do. So stop guilting yourself. He has been resistant to much of the appropriate care and exercise since his health started declining. This is not your cross to bear. He can refuse. However if he continues to refuse care and doing what will help him I do think having a hospice provider come in and explain options to you both would be more than appropriate. Not saying its time but he needs to understand what he is doing to himself.

Thanks tush. My question to you is this…

If a PCP and the specialist they send you to, disagree…who do you follow?

I have always thought that if a PCP sends you to a specialist, it is because they feel you need skills beyond what they have… Hence the word "specialist".

But if the home health nurse and the home NP (acting PCP) disagree with the specialist…what then?

Do we ask the PCP nurse practitioner to contact the neurologist NP?

Each of them show almost disbelief and definite disagreement with the others approach. My gut tells me that I want to follow what the specialist says. Not necessarily because of their opinion, but because they are the "specialist". But I don’t have to deal with the specialist on a regular basis, and I do have to deal with the nurse practitioner monthly and the home health nurse weekly or biweekly.

How do I know how to choose what is best? That’s why I see the medical professionals. But they are polar opposites.

Just for clarification, my husband did not go see the neurologist nurse practitioner regarding blood pressure. He went due to a constricting band across his abdomen causing him a great deal of pain. She addressed that situation. She said that it was nerve pain instead of muscle pain, and gave him medication that has greatly helped. It’s just that before he saw her, her nurse took a routine BP on my husband and was very concerned. That’s the only reason it even came up.

I absolutely understand that sometimes healthcare providers have to be stoic and distanced or they would burn out with all the grief they must face in their profession.

We have an absolute horror story to tell, our 15 year old Son has been hospitalized 7 months today. I won't t/J here, and I'm not quite ready to share our story, but its full of neglect, and incompetence.

Your PCP and neurology need to speak with each other and stop putting you in the middle. O suspect the PCP doesn't understand the reasoning of neurology. To blatantly disagree and tell you that is really unprofessional and shows a lack of knowledge that the specialist has. To become a specialist you have to do all the education to become a physician and then at minimum an additional 2 years of training and education in said specialty abd with things like neurology it can be even more if they are specialized in a subspecialty like spinal cord injury. Yes follow the neurology recommendations unless you are seeing negative issues from it. And if you do see negative things contact the specialist. Often in complex cases specialists speak to each other about treatment plans and how things effect other specialties conditions. So again tell your PCP to speak with the neurologist and after they speak you would be happy to consider agreed upon treatment plans