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So…I’m having a tough time figuring out how best to help my H at this time.

It is maddening to try to communicate with him most of the time, just in a normal situation. He’s just really wishy-washy with answers like he’s wanting to say the "right thing". I’m guessing that is due in part to his conflict avoidance and also my "irritation at him since "that" day. Honestly, it’s irritating.

But now that his health is a bigger issue, and although I don’t necessarily agree with him, I have promised to support his decisions about his life from here on out.

Right now I am bumfuzzled about his eating and getting out of bed. The last time he was out of the bed for any length of time was June 10 at my great niece’s wedding. He can get up, but lately he gets a little lightheaded and tired pretty quickly.

And now he just doesn’t want to eat much. Today, not at all. I have promise not to push, but honestly I feel as though I should be bringing him meals. But recently I have just ask him to let me know when he wants something to eat and I will bring it to him. And he never asks for anything.

Because he is a non-communicator by choice, I never know if he just agrees with me to avoid the conversation, or doesn’t care.

About once a week I have a sit down conversation with him about what exactly I need to do… Do I need to just not feed him and never push him to get out of the bed? He says no, that I should encourage him to get up and to eat. But he just doesn’t want to.

So it seems that my choices are to encourage him, which may be irritating him, to get up and eat. Or I could just leave him alone and he would do nothing but lay in the bed and get weaker and weaker. My gut tells me that is what he wants, but I’m not confident enough in that belief to take a chance that my backing off could facilitate something that he can’t come back from.

This is definitely uncharted territory. I have experienced it before with my mom when she was at the end of her life. But she was 92 and so the decisions weren’t as impactful for her. If I got it wrong with her, it wouldn’t cost her bed a few short weeks of her life, which she would have preferred, whereas my H could possibly have some good living left if he wants it. I just don’t feel confident in my ability to "read" him anymore.

Any insights?

Whatsright, do you feel this is a form of 'giving up' on his part?

Is there anyway to get some IC help for him through ZOOM or some other method? I think you can only do what you ARE doing -- try to get him to eat and try to get him to get up.

Thanks, I appreciate that.

Counseling is some thing that he has never responded to, whether it was for us, or him separately.

The thing is, in the last couple of days I have not really "tried" to get him up and have him eat. I left it to him to tell me when he need something. But… Nothing.

Yes, I think it’s possible that he is letting himself go "downhill", but I’m not sure.

When he communicates at all, he sends mixed signals. That is in this situation as well as "the" situation 16 yrs ago.

I’m not sure what has caused this latest weakness and tiredness and lack of appetite.

I’m wondering if it is related to the sepsis. Online I found some information about those symptoms being a consequence down the road from having sepsis, but I don’t think his sepsis was quite as serious as the kind that would cause those symptoms. If that makes sense.

I’m just so indecisive right now and that’s my problem. I have good intentions. Even when I don’t agree with his every decision, I promise that I will support them.

The problem is that he is so wishy-washy and quasi answers a certain way one time and and then gives the impression later that he has strong resolve to get stronger.

I don’t know which path to follow.

Just a thought but have you tried setting up a small table and fixing a nice 'dinner for two' and joining him? Maybe if he'd see the trouble you go to, to set it up, he would eat with you?

What a nice idea.

Things are very distant between us.

I wouldn’t know how to make that leap.

He basically doesn’t talk to me except every now and then when he decides to, I guess. If I’m sharing something about one of our boys, or about the grandchildren, sometimes he will respond. If I’m just talking about some thing on my mind or some thing that’s happened during the day, sometimes he doesn’t acknowledge that I’ve spoken. Especially if it is something negative. I’ve traded my hurt for anger when this happens.

And I have tons of faults.

Sadly, I think we’re past the intimate dinner together.

What a very difficult situation for you.

I would probably make him a plate of whatever i was having for dinner and offer it to him. You provided the meal, his choice to eat it or not. If he says no, just remove it without discussion.

Or ask "Is this your way of telling me that you are done?" tell him you will respect his decision either way, but you need to know as his caregiver and wife. if so, then call PCP and consider palliative or hospice care. Maybe have someone come out and discuss what these mean and if not eating is him making that choice.

Yes, I basically do that… Take food and then take it away if he doesn’t eat it.

Also, I have asked him many many times if X, Y, or a Z is his way of letting me know that he’s done. And he always says no.…

… or, no response at all.

I told him just yesterday, "do you understand that not making a choice is the same thing as choosing?". He said he didn’t understand.

🥲

It sounds like you might be way past the sharing a meal idea. BUT .. you have to eat too -- and if you did that, you would have a captive audience with him. If he doesn't eat, fine. YOU enjoy your dinner and just talk talk talk -- about the weather, about the grandkids, politics, the house -- about the first part of your lives together ... just TALK because what is he going to do? He will have to listen. I can't imagine doing all you do for him and also having to live in a silent home.

You are an amazing woman to keep up with the pace of taking care of him. You've become a wealth of knowledge about his medical condition and try everything to help him. Always post here because we listen and support you.

TBH, through the years after his "choice", he does most anything to avoid conversation with me.

-says "I don’t know"

-says nothing at all

-says what he thinks I want to hear

etc etc etc

I can’t even fathom what it would mean to me to have a real conversation with him. To know what he’s thinking. To help me know how to get both of us through this.

But I am not going to hold my breath.

Did you ever get a palliative care consult set up?
You need that. They will help you both navigate this a bit.

If he doesn't want to eat, or drink, or get out of bed that's his choice, however, you do need to be sure he is changing positions frequently. You should also set a Muscle Milk, or Ensure Plus or something at his bedside so he has it to drink if he gets hungry. Lastly make sure he is drinking plenty of water to keep his kidneys and GU system flushed out.

Please please please call and get an appt w/ a palliative care provider. Many companies will have a provider that comes to the home even.

Tush…thanks for that recommendation but he doesn’t want that. ALWAYS says, "I’m going to start ________ tomorrow. (Fill in the blank with getting up, eating better, exercising, rehab exercises, etc.). And trust me, I have pointed out to him in calm and not so calm ways how ridiculous that is.

Just like I’m trying to respect his wishes in other ways, I can’t just bring in palliative professionals against his wishes.

He believes palliative care means he’s done trying. He believes that he is not done trying, then he is going to "shake it off" and start getting up again.

What I can’t tell for sure is if he really believes that, or if he’s just pretending to believe it for us, or for himself. He’s such an accomplished athlete than I believe the shape he’s in now is inconceivable to him.

If you cede all decision making to him, he's done. And perhaps deep down that is what he wants.

But if you take over, you're assuming a lot more responsibility and possibly his resistance because he may really want to check out. Do you want that burden?

My recommendation? IC for you. You can't help him if he doesn't want to help himself. IC for you will help you achieve some inner peace with a truly rock/hard place situation.

Cat

He believes palliative care means he’s done trying. He believes that he is not done trying, then he is going to "shake it off" and start getting up again.

Well he is flat out wrong. That would be hospice, and that is totally different. Palliative care, look it up, print off the medicare definition, and guidelines if you need to.

He expects you to continue to be his servant and you are all too willing. Stop. Stop waiting on him hand and foot. Bring in private duty help, or family to give you significant breaks. I mean more than a couple hours a week, I mean a whole day 2 days a week. Let him deal with someone else being his caregiver.

Palliative care is simply to outline the goals of care, and have a physician/provider in your corner helping you reach those goals. It has NOTHING to do with end of life. Now some people may choose the hospice path once someone helps you define those goals. But they are very different. He needs to define goals, and you should ask for some Home Health therapy, and nursing to come in and assist you. Until you stop doing it all he is going to continue this behavior. Period.

I think perhaps I am not giving a clear picture of things.

I don’t do things for him that he can do for himself. The thing is, there is very little he can do for himself. He can eat a sandwich for himself. He can open up the little pill container and take his pills. He cannot get up out of the bed. He can’t roll from side to side in the bed..

What I do for him is to catheterize him, bring him food, bring him water and a bottle that he can manage, put his pills in a container that he can get them out of. He never asks me to hold his water bottle, or to feed him his sandwiches, or to feed him his pills when their in the appropriate container that he could manage.

So I guess I can see how it seems like I "wait on him hand and foot". But the alternative to that is that he can’t drink water and he can’t eat and he has no pills to take and he can’t go to the bathroom.

If I am being dense, I apologize

My biggest thing at this point it’s just knowing how to interpret what he says and does and how to understand what he’s really hoping for for the rest of his life.

Oh, I forgot to mention that this morning he woke up and asked for breakfast croissants, and then at about 5:00 PM asked for something else to eat.

Understanding something is so crucial for me, but this is very hard to understand.

I wish so badly that we could just sit down one day, Get up three days later, and have had a heartfelt honest conversation and cleared the air a bit.

[This message edited by WhatsRight at 12:18 AM, Wednesday, June 29th]

Sorry dup post

[This message edited by WhatsRight at 12:23 AM, Wednesday, June 29th]

So, in the middle of the night my husband needed to pee, and his urine was cloudy… First time since he was out of the hospital it wasn’t crystal clear.

So I immediately got out the kit to insert a Foley catheter. I had never done this before and I was extremely anxious about it. But I finally got it in, and everything is working well.

I asked him if I should take a urine sample in to get cultured, because it is my understanding that is his plan. To find out if it is the kind of infection that needs immediate anabiotic‘s, or if it’s something we might could try to flush out without anabiotic‘s.

But he says he doesn’t want to culture it yet. That seems to be variation from what he decided he wanted to do. So I guess this thing is going to go back-and-forth and there won’t be any stable guidelines for me to follow. 😟

Oh, sweet friend, I'm so sorry for all of this.

My thoughts...

Can you get yourself to a place where you accept that he is going to die sooner than you would plan? It seems to me that all of your posts recently (and I am NOT saying to post less!!!!) have revolved around this issue. You seem to have a belief that you can somehow control the outcome of his life and delay his death until you are "ready." And maybe also that if you get to that place where you are "ready" then you will have somehow caused his death to happen.

This is magical thinking and is a primal coping mechanism that can be hard to break out of.

You need, for your own sanity and quality of life, to completely grasp that he is going to die. And it will likely be before you feel ready. And that is absolutely okay. You will be fine. You will grieve and you will heal. You also need to grasp that you truly have no control over the outcome there. I mean... if you stopped catheterizing him or stopped feeding him then obviously you'd be causing an impact on the timeline. But I think we know you well enough to know you won't do that.

He's a high cervical quadriplegic who has most likely FAR outlived any projected life span at the onset of his injury. He is at very high risk for UTI, as you know, and for sepsis. He could also develop a pressure ulcer and become septic from that. He could have a blood clot that goes to his brain, heart or lungs. He's high risk for pneumonia, which can also turn into sepsis. I'm not trying to be mean or scare you. Quite the opposite. I strongly believe that information is power. And when you have a name for the things you fear they become less frightening.

My dad was diabetic. Before his dementia he was very careful with his diet and keeping up with his blood sugars. For the last 2 weeks of his life he subsisted entirely on milk shakes. He communicated quite clearly, albeit nonverbally, when he didn't want anything to eat or drink. My brother and sister were very uncomfortable not trying to encourage/push him to eat. They worried about him being hungry. And maybe that's a hard spot for you too. What I was able to tell my siblings is that when someone stops eating voluntarily, it's because they don't feel hungry. If their body is preparing to die, that's a really good thing. Digestive processes slow down or stop completely. Food that is forced down (or just cajoled into eating "one more bite") will just sit in the gut and decompose. That causes gas that is quite uncomfortable. When it eventually is digested and eliminated, there is the discomfort that can be involved with all of the movement and manipulation required for cleaning up the incontinence. So not eating can be a protective mechanism. As dehydration occurs naturally, endorphins are released. Those are the "feel good" hormones our body produces. It's a natural calming/sedating effect that also brings relief of some pain.

It seems that he is never going to be able to express his feelings or communicate on any meaningful level with you. But he is speaking loud and clear non verbally, if you'll listen. Can you acknowledge that maybe he's done the best he can with the tools he has and that he doesn't have quality of life to inspire him to keep going? That's not any sort of indictment of you at all.

I think maybe if you can find some peace with the topics I've brought up, then your path will be clear. Filter every action through the lens of "is this going to provide comfort or quality of life?"

I love you, Sister, and want peace for you in this life. Again, I'm so sorry that this is all so hard for you.

HFSSC…thanks so much. ❤️

I think I do understand that he will more than likely die before we expect. Am I ready? Of course not.

I’m really very scared right now. A few days ago his urine begin to get a little cloudy and so we immediately put the plan that he had to come up with into action… We stopped the intermittent cathing, put in a Foley, and he has been drinking an unbelievable amount of water.

His urine cleared up within one day. We left the Foley in a little longer to be sure as much of it had come out as possible. But this evening it started to get cloudy again in the Foley tube. He’s going to try to force fluids for the rest of the night.

We have a birthday party for our grandkids tomorrow. He says he feels his bladder burning but it’s not really bad. The plan was that he would try to avoid antibiotics until it got too painful. I asked him if he wanted to go back to the hospital and he said "not until after the party." I told him that everyone would understand if we missed it, but he looked at me and said "I want to be at the party." I could tell he was serious. It scares me because he has missed things before. I’m afraid he’s thinking it may be his last family function.

So I have no idea what tomorrow will bring.

[This message edited by WhatsRight at 12:21 PM, Friday, July 22nd]