Help - I am burned out and dealing with someone who is stubborn

Posted by kartwk @kartwk, Oct 8 11:05am

My husband has a history of COPD and asthma. He has used every inhaler that is available and same with the drugs, which is claims to have problems with all of them

For the last two months it has been awful. We seem to be at the ER and doctor every few days. Last time at doc was Friday. He was given an antibiotic. This morning, I ask him how his lungs are doing and he tells me fine. I figured this because for the last two months or so all he does is go around honking, deliberately, up stuff and looking at what color it is. Trust me, I have the kleenex all over that I keep picking up. He is OBSESSED with the color - is it green, is it gray, is it clear. This even though the doc on Friday told him that color doesn't matter.

Now he is back on the phone for another doc. apt. His lungs, which were fine just an hour ago are now "all clogged up" and he is honking (generally becauses he keeps trying to) and he feels awful.

I must say, this shocked me as he just told me he was getting better.

Anyway, I can not clean around the house and he is b*tching that because of the house his lungs are bad. BULL. I do not use any strong chemicals. I generally use vinegar and water to clean floors, I dust weekly. NOW, though even vinegar bothers his lungs, so he claims.

The final straw for me came this weekend after it had rained several days. He walked outside and, oh his lungs were bothered. Why you ask, Because of the smell the air gets after it rains! This is not about pollen, etc, but just the earthy smell that comes after a good rain. At this point I am having my doubts.

I cannot tell you how many differnt doctors we have been to. Two weeks ago he told me to be ready to take him to the hospital, that didn't happen. Now he is sitting there telling me he is gonna die!

I just don't know what to do.

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Well, no help that we can count on. His daughter is about 5 miles away but one cannot count on her for anything. Though back in June when we had him in the ER because he thought he was having heart problems, I caught her talking to him about his will, to make changes, etc.

She has stolen things from me in the past so I have as little to do with her as possible and certainly don't want her in the house alone with just her father.

The last time we saw her was June 4th when she was told that her badgering about our wills had to end. That everything went to me when he passed, and visa versa. Whoever was left would sell everything to go into assisted living. She certainly did not like that, and we have not heard or seen her since (Thank Goodness!).

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You should talk to his pulmonologist about pulmonary rehab . The therapist not only give you ways to increase lung capacity through exercise - and big part is educating you on your lung condition for him COPD - this may give him some peace & give him someplace to talk to professionals who can give him some insight on his condition. Sometimes the not knowing causes anxiety & fear and the need to try to control what he cannot - which is his COPD. Pulmonary rehab would give him a place to express his fears and have professionals help him understand his condition & what he can do to help increase his lung function. He sounds scared & just waiting for things to get worse - education on his condition & what he can do to help strengthen his lungs may help him so I encourage you to talk to his pulmonologist. Take care.

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My heart is with you and you are not alone. My husband with FTD becomes fixated on things too. It could be anything. In your case if the docs say that there is nothing physically wrong then its time to look at other issues. For me, I called and strongly advocated that he is not living the best of the rest of his days with the anxiety, stress, and obsessing he now does. It was paralyzing for him. Admittedly, it is often exaggerated or irrational but to him real. They finally made some med changes. I also tried to hug him more and reassure him that I am there and will call the doctor as needed. I got a pulse ox cheap online and he can see his heart rate and oxygen level because paranoia also comes in and this is an objective measure. The struggle affects me and is causing me stress-related issues so advocate for yourself and him. Your in my prayers.

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@ksa230

My heart is with you and you are not alone. My husband with FTD becomes fixated on things too. It could be anything. In your case if the docs say that there is nothing physically wrong then its time to look at other issues. For me, I called and strongly advocated that he is not living the best of the rest of his days with the anxiety, stress, and obsessing he now does. It was paralyzing for him. Admittedly, it is often exaggerated or irrational but to him real. They finally made some med changes. I also tried to hug him more and reassure him that I am there and will call the doctor as needed. I got a pulse ox cheap online and he can see his heart rate and oxygen level because paranoia also comes in and this is an objective measure. The struggle affects me and is causing me stress-related issues so advocate for yourself and him. Your in my prayers.

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Thank you. It is nice to know that others understand when I say I feel like digging a hole and just jumping in it because it would be peaceful.

If it isn't his lungs it is his heart, his hip, his knees, hs back and on and on. As I stated before listening to him constantly, and I mean constantly grunt and groan has gotten to me.

We started out to his 3rd. doc. apt. in less than 2 weeks and ran into road constructions. Instead of waiting to go through it, he decides to turn around (and grunts and groans while turning the wheel) go back and cancel the apt. I just kept my mouth shut, but if he hurts so badly then why be deterred by road construction. Sure it was going to hold us up a bit, but we could get to the doc. I just don't understand.

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@babs25

You should talk to his pulmonologist about pulmonary rehab . The therapist not only give you ways to increase lung capacity through exercise - and big part is educating you on your lung condition for him COPD - this may give him some peace & give him someplace to talk to professionals who can give him some insight on his condition. Sometimes the not knowing causes anxiety & fear and the need to try to control what he cannot - which is his COPD. Pulmonary rehab would give him a place to express his fears and have professionals help him understand his condition & what he can do to help increase his lung function. He sounds scared & just waiting for things to get worse - education on his condition & what he can do to help strengthen his lungs may help him so I encourage you to talk to his pulmonologist. Take care.

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Thanks Babs. I can't tell you how many pulmoary docs we have gone to and through. Whatever they suggest or prescribe he has problems with. I want to just SCREAM!

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I have my suspicions about dementia but he is sharp when he talks to docs, though sometimes doesn't catch on to what they are saying so I explain it to him.

BUT, in the last few years he has started doing some strange things. The one that tees me the most is that when we have chicken I cannot throw the chicken bones in the garbage, either inside or outside the house, because, according to him, they stink. He wraps them up in aluminum and plastic bags and keeps them in refrigerator until the night before garbage pick-up. Nothing else, just chicken bones. All other food waste pork chop bones etc.,
are fine.

The other thing is empty milk gallon jugs. He wants to keep them around the kitchen garbage can because they take up room in the big outside garbage can! I tried to point out that they seem to all fit the night before morning garbage pick-up, but he gets insistent and wants to start a fight. Only in the last few years has this been a problem.

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My insight might be helpful but my first husband died in 2012 at age of 64. Diabetes myleodysplastic anemia online porn addiction. I had to get him admitted to a nursing home because I was burned out psychologically physically. He passed away 6 weeks after admission. I held his hand through his last breath. Is it time for you to look at other options? In 2014 I got bacterial meningitis of my brain. I was coded. My illness was directly related to over extending myself. I am 64 now. I got my health back. We all have limits.

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@kartwk

I have my suspicions about dementia but he is sharp when he talks to docs, though sometimes doesn't catch on to what they are saying so I explain it to him.

BUT, in the last few years he has started doing some strange things. The one that tees me the most is that when we have chicken I cannot throw the chicken bones in the garbage, either inside or outside the house, because, according to him, they stink. He wraps them up in aluminum and plastic bags and keeps them in refrigerator until the night before garbage pick-up. Nothing else, just chicken bones. All other food waste pork chop bones etc.,
are fine.

The other thing is empty milk gallon jugs. He wants to keep them around the kitchen garbage can because they take up room in the big outside garbage can! I tried to point out that they seem to all fit the night before morning garbage pick-up, but he gets insistent and wants to start a fight. Only in the last few years has this been a problem.

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Your situation sounds exhausting. I can see why you are so fatigued. Caregiver fatigue is real. It has taken a toll on my physical health. If I had it to do over…..I’d reconsider for sure. I get it’s your husband, but beware of your own needs. I always encourage people to get a legal consult from elder law attorney, so you know your rights and responsibilities. This is very important when a spouse has cognitive issues or a change in behavior and personality.

I’m no expert, but when my cousin first started exhibiting signs of change, I had no idea what it was. She exhibited odd behavior even though she was always known to be rather quirky. She began collecting large quantities of certain items, like paper towels, Lysol, empty milk containers, etc. This was before covid, and it did come in handy. Lol. She became convinced that her adult cat could escape from her house through a crevice the size of a pea. So she taped around doors and windows. She would become disagreeable over nothing. She accused me of leaving grease on her kitchen countertop, when it was nothing but a drop of water. She cut the items to go into her trash can into small pieces and washed them. So her trash had to be clean and small. She’d start an argument over nothing. A friend at my office asked me if she had dementia and I said no way. I said, she runs her own household. I didn’t realize that it often starts as odd behavior, poor judgment, lack of insight, agitation, etc.

I wish there were better options, but situations like these are very difficult. I hope you are able to get support for yourself.

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@kartwk

Thanks Babs. I can't tell you how many pulmoary docs we have gone to and through. Whatever they suggest or prescribe he has problems with. I want to just SCREAM!

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I understand your frustration I'm just wondering if you've ever conveyed these feelings to your husband? Does he know how helpless and scared you are about his condition & not wanting to listen to Drs to help him manage his condition & especially how his words about dying affects you? There are so many things he can do at home to increase his lung capacity & help decrease his muscus. What does he find issues with when Drs want him to do treatments? He's in denial, my mother who I'm a caregiver for is too blaming her condition on everything, but once she went to rehab, which I told her would help her feel better she agreed to go... not really understanding what it entails. She hates her inhalers, her nebulizer treatments & having to blow into the Aerobika several times a day - it was like pulling teeth to get her to do them - it took her awhile to finally see the benefits because she was noticing her breathing & muscus & coughing was better. I don't know your situation so I will speak what I would say to my husband if this was an issue -- I'd ask him, beg him to go to therapy, do the meds & treatments the Dr s are prescribing & if he would make excuses, get angry or refuse -- my final plea would if you can't do it for yourself do it for me. He needs to know his condition not only affects him it also affects you and your future & acknowledge you know he's scared & angry but he's not alone in this fight. Again I don't know your situation but I do know that many men have trouble talking about their feelings & fears which usually results in anger, fear & resentment. I hope you have support from friends & family - being able to have that support will hopefully give you strength to deal with whatever comes along. Take care - know there are others who understand what you're feeling & going through. 💜

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@babs25

I understand your frustration I'm just wondering if you've ever conveyed these feelings to your husband? Does he know how helpless and scared you are about his condition & not wanting to listen to Drs to help him manage his condition & especially how his words about dying affects you? There are so many things he can do at home to increase his lung capacity & help decrease his muscus. What does he find issues with when Drs want him to do treatments? He's in denial, my mother who I'm a caregiver for is too blaming her condition on everything, but once she went to rehab, which I told her would help her feel better she agreed to go... not really understanding what it entails. She hates her inhalers, her nebulizer treatments & having to blow into the Aerobika several times a day - it was like pulling teeth to get her to do them - it took her awhile to finally see the benefits because she was noticing her breathing & muscus & coughing was better. I don't know your situation so I will speak what I would say to my husband if this was an issue -- I'd ask him, beg him to go to therapy, do the meds & treatments the Dr s are prescribing & if he would make excuses, get angry or refuse -- my final plea would if you can't do it for yourself do it for me. He needs to know his condition not only affects him it also affects you and your future & acknowledge you know he's scared & angry but he's not alone in this fight. Again I don't know your situation but I do know that many men have trouble talking about their feelings & fears which usually results in anger, fear & resentment. I hope you have support from friends & family - being able to have that support will hopefully give you strength to deal with whatever comes along. Take care - know there are others who understand what you're feeling & going through. 💜

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Oh Babs thank you so much for the ideas.

I am still working on him. I tried the "do it for me" approach and was promptly told that I obviously didn't give a darn about what he was going through.

He now claims he has asthma, but has always been diagnosed with emphysema and COPD.

This afternoon we saw the doc AGAIN. (1 ER visit and 3 doc. visits in 2 weeks). Funny, his whole demeaner and complaint was different. Now things are clearing up, the phlegm is now clear etc. but he still has some problems (I'm doing the slow burn after all he put me through quietly). Must be his allergies/asthma, he says.

Doc. clarified to him he does not have asthma, so a lot of things won't work for him, but emphysema and COPD so that line from H isn't going to work any more.

Doc checks out his lungs and says he only hears a tiny bit of crackling in the lower, left lung, nothing bad, but tells him he needs to continue his inhaler use, gave him another course of pregnoson. I told doc. H didn't always use inhaler as he was supposed to and got the look" from H. Also told him that H was fixated on sucking stuff up from his lungs into a Kleenex and checking it out constantly. Of course, H tried to deny but I know the doc. caught it.

I suggested lung exercises to which doc. agreed, but hubby, well he wasn't going that way at all. Hey, can lead a horse to water.....

We are home, H has got his prescription and is quiet for now. Funny, after hacking and sucking stuff out of his lungs for 2 weeks, including this a.m., all the sudden he is peaceful. I am truly believing it is in his head.

Tomorrow is a new day and he will start all over again. If I was a betting woman I would bet we are either in the ER or back in the docs. office in 2 weeks or sooner.

And away we go again.

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