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This has just happened today.

He slept really late today. I know I should, but I don’t keep him to a real schedule because some nights he doesn’t sleep at all, so I let him sleep till he wakes up.

Early afternoon I went in and ask if he was going to eat. He just shook his head. Then he said he was not going to be eating anymore. I asked what about his meds. "No". I asked why. He said he was tired of me being mean to him.

It has been tough lately. Sometimes I don’t get sleep because he gets hot during the night. We go through changing out covers from heavy to light, checking blood pressure, and spraying him down with water..face and chest/abdomen. Usually takes him a few hours to cool down when that happens.

So we are both worn out. He gets angry when I don’t give him muscle relaxers, pain meds, and Valium at the same time. Even though the nurse has explained what combinations to be careful with. Says I treat him like a child.

In serious conversations about end of life decisions, he has said that he wants to be as pain free as possible. So this is a contradiction.

I talked with my niece – a hospice nurse – and she told me that I should probably just "wait and see". That he was probably just in a bad mood or angry with me, and he will probably get hungry or get in pain and decide to have either food or medication. When I consulted her about it, I was mostly wanting to know how to handle this situation with his healthcare providers. I don’t feel like I can just sit on this information and not share it with them.

I’m not going to try to force him to eat or whatever, but I don’t know how to take care of him, if he wants no care. Our frustration level is high.

He currently has a skin abrasion on his back. The NP has seen it, and we put duoderm on it, but he needs to be turned. I didn’t think to ask if he was going to allow me to turn him, clean his catheter, etc.

What is the possibility that he’s just angry?

[This message edited by WhatsRight at 12:11 AM, Saturday, January 20th]

I cannot speak to your exact situation; my own experience comes from taking care of my dad in the last years of his life. He had cancer and many, many days were rough. He was never angry at me but the situation certainly wore on him and me and it was a very very fine line to respect his autonomy as an adult. There were times I crossed that boundary in the interest of care and, of course, over the months we both had to let go of embarrassment with respect to personal needs such as washing and even wiping on occasion. He was adamant he could do everything himself and I lived in fear of leaving him even for 15 minutes in case he decided to head to the bathroom by himself. A fall would have been the end. It was the hardest thing I've ever done, along with doing the same for my mother over a decade earlier/.

That said, end of life discussions--and even a DNR--were sticky subjects that sent him into being the most angry I've ever seen him all my life. Until they weren't. Closer to the end, he finally outlined his wishes and we followed them to the letter. Dad certainly had days he would not eat, and didn't have an appetite either. I put a mini fridge in his bedroom and filled it with his favorite things including protein drinks like ensure and yogurts. But illness ate the weight right off him, as cancer does, and he weighed in at about 130 pounds when he died, a very robust man of 6'4".

I would tell the healthcare providers that your husband does not want to eat or take his meds. Something similar happened with my dad and the wait and see strategy also was the correct one. His meds were important and eventually he took them but honestly, from a medical prospective, it is very normal for people in palliative care or heading there to stop or slow their intake. The only option is an IV and that usually isn't the strategy.

What I most see in your post is the fact YOU are exhausted and that worries me as someone who has spent those nights. YOU need to take care of yourself and get as much help as possible caring for your husband. A level of resentment and even contempt can develop as a patient is in care because they are in pain, uncomfortable, facing death in some cases, and the closest and easiest target will be you, the person who holds the meds etc.

Also the bedsore--or developing one is a serious issue. My Dad got one on his heel while still in the hospital in the first months and at one point they thought his foot had to come off. It was truly horrific and remained a sore for over a year even with care and meds and a couple abrasions. THAT certainly needs to be addressed.

I probably have not been any help. You might want to consider closer to the end to move him to a hospice or somewhere with the capacity to treat him. My dad chose a Medically Assisted End and we spent a week in a hospice suite in our local hospital together at the end. I slept there, never left his side, and had the peace of mind that help was a call away. I could not lift my dad even at his lowest weight because he was so tall and I didnt want to hurt him.

Take care of yourself. Wait and see what your husband will allow or not with respect to meds and food. Inform whomever is supporting you of the situation. I will be thinking of you.

[This message edited by NorthernMSB at 2:34 PM, Saturday, January 20th]

Continue to offer food, meds, turning and other care, but respect his choices and decisions. He may not be able to tell you if he's angry or just done. At a good time, you may ask if he is choosing no care because he is done, because he wants to hurt you or for other reasons. This must be a very difficult time for you. I'm sorry.

Whatsright, I am so sorry you are going through this. My Mom passed at my home while on Hospice care. The last 5-7 days of her life, she didn't want food, meds or water. She had been in a lot of pain for a couple of weeks prior but the pain seems to have dissipated near the end. She would just shake her head and close her mouth tightly when we'd try to give her water or food or meds. She didn't get angry or troublesome, just very quiet and started sleeping a lot.

Is there a possibility he is getting septic? Often when infection is brewing people become not themselves, mean people nice nice people mean.
With his history of UTIs I would be very concerned that thos is happening.
Obviously you need to respect his wishes but he can go a long time with no or very little food, as long g as he is drinking. I would make sure he has plenty of fluids available to him maybe put some protein powder in some gatorade, or a protein shake for him.
Can you ask your NP to order a hospice consult to come speak with him frankly about what he truly wants.

WR, how are things today?

Well, it’s been a crazy couple of days. Warning…might be TMI.

He went about a day and a half without any of his meds. But, I think it was Friday evening…he was hurting so bad he was screaming – like back when he was weaning off of the huge amount of pain meds. So he finally asked for his pain meds. And then asked to eat something the next morning.

I guess in retrospect, he was being honest – he was just really pissed at me, thinking I was being mean and uncaring toward him. In the past he has trusted my care for him, but lately I think he feels as though his "power" to make decisions is diminished. I make suggestions based on what nurses have told us, but the only thing I ever refused to do is give him a combination of meds that the medical staff has told me not to give him. Anyway…

Then last night, he asked for me to come back to the room where he was in bed, and check his catheter/bag. He said he felt like something was "stopped up". And he was right. The urine simply would not flow through his indwelling catheter. I tried to flush it with some saline but it was like trying to push through a concrete door.

I called the emergency home health nurse and she lives about 20 minutes away. While she was on her way, his head began to hurt which was signaling the beginning of dysreflexia. I removed the indwelling catheter and spent about 30 minutes trying to insert a straight cath. FINALLY got that taken care of about the time she arrived.

Long long long story short, I cut up the Foley catheter to find lots of urine residue that had clogged it up. Personally I think it was from where he had not been drinking water aggressively like he always does. Anyway, she went ahead and changed out the Foley and even got a sample to take to the hospital to get a UA.

Today he has been personable and cooperative. So I guess he just had a bit of a "nutty".

But, tush, I am glad that you pointed out that confusion and grumpiness etc. could be a result of being septic. I will certainly be on the lookout for that and keep that in the back of my mind from here on out. Thanks.

Also, the DNR can bee really tricky

"I do not want to be intubated" is what my husband and I have both chosen, but that is in regards to living the rest of our lives being intubated. But if there was some small procedure where intubation was required for surgery or something, or if one of us needed temporary intubation, I would personally want that, if I had any kind of quality of life at the time.

Nothing is certain, and there are so many different things that could happen, I don’t feel a lot of confidence in making choices for my husband at this point. I guess that’s one reason why whenever he has a health scare or gets in a "mood" I am concerned that I wouldn’t make the right choice for him.

thinking of you whatsright ❤️

I just wanted to follow up because I hate to leave the impression of hard struggling when it is better.

The "mad" and "hunger strike" lasted about two days. The thing that was most maddening about it was that when he started back up with food and medication he acted as though nothing had happened. He didn’t say, "I was so rattled the other day and I’m sorry I acted like that". Nope. Just asked for his breakfast one morning as if nothing had happened.

But, no matter. I’m just glad that he’s on the other side of it and seems to be doing OK.

On my part, I have decided that I have been operating from a perspective of wanting things to be open and honest and like a real relationship between us. I don’t think it was intentional, but I think that was happening. So, since then, I have worked from the perspective of him more like a patient rather than what I would want for my husband. And from that perspective, I don’t get so upset when he snaps at me or offended when he suggests I’m not taking good care of him, etc.

I’m hoping this perspective will keep us on a better track. Definitely better for him because he won’t get his little feelings hurt. (Sorry…snotty on my part). But also better for me, because even though we won’t be making any progress in our marriage, at least we will probably be more civil. 🤞🏼

[This message edited by WhatsRight at 4:06 PM, Friday, February 2nd]

WR, I agree that if you can loom at him as a patient and you as a caregiver may give you some perspective and allow you to separate yourself from him so when he is mean or manipulative or abusive you can separate yourself from it. Allowing you some dissonance (which in this case can be super helpful)

You are an amazing spouse and caregiver. Any other than thanks and true appreciation from him is unacceptable however that is not the dynamic of your relationship. So keeping the emotions out of it will prevent him causing you more pain.