Lungs, Heart, back pain and family issues

Posted by sistertwo @sistertwo, Aug 16 5:53pm

I'm not sure where to put this post, but I'll start here. How do you deal with adult children who don't care about a parent because they believe their ailment is "his own fault"?
My DH used to be quite active and then about 5-6 years ago he quit doing a lot of things. I thought he was depressed, doctor reports were always good, etc., until we realized in 2018 he was suffering from A-Fib and nearly died while at the hospital. In 2019 he had an ablation for that and flutters. It has worked out well, but shortly after that he started getting out of breath easily. His VA chart from military discharge noted Agent Orange damage to his lungs, but it was the back that gave him the most problems. He's had a bad back ever since Vietnam (purple heart recipient) and the 29 yrs I've known him his posture/vertebrae is visibly lop-sided. He was told before I knew him that his back won't get better and surgery was a 50/50 chance of success. He didn't let his back stop him from anything, until these past few years when everything has gotten worse. He doesn't want a second opinion, although maybe I should insist (??). Prescribed meds haven't worked any better than Tylenol, so that's what he takes for it.
In 2020 he started having shortness of breath and uses a CPAP with oxygen at night. He uses a nebulizer, Trelegy, an inhaler, a Vibralung, and is currently doing a Mayo study program where he does routine exercises from a Tablet, is monitored and today he finally started using his Inogen during the process, which went better than not using it.
Anyway, my question is that a couple of his sons, who are in their 40's don't care to hear anything about his health, because they believe it is all his own fault anyway, as "he chose (choses) to live an unhealthy lifestyle." DH was never a walker/jogger, and yes he has been a drinker, used to smoke cigarettes until he quit cold turkey 15 years ago, and he holds his extra weight all in the stomach (250 pounds @ 6'3"), so looks heavier than he his. Regardless, they think he brings his medical condition on himself and this year didn't even call for his bday.
There are times when I get frustrated with his lack of ambition, but I respect how hard he is working at correcting it. I do not think that just because a person is having a heart or lung issue it is only because of their lifestyle. I know health nuts that are way worse than DH is and these sons (each with great careers) are past smokers, still chew tobacco, heavy drinkers and joint users. The latter is where I think the righteous know-it-all attitude comes into play. But, because they are active and more physically fit I guess they feel it gives them the right to criticize DH. How is a person suppose to deal with that mentality? DH is 73 and I'd sure like for them to understand not everything is his fault. His middle son is totally caring, supportive and encouraging. Are there books on Agent Orange and how it can change over time? One doctor told DH the damage of tobacco use is gone, but not the Agent Orange damage. I didn't hear that myself, so I don't know if there is a difference or not.
We have gkid's birthdays and a wedding coming up so will be seeing them. Would you recommend avoiding all health related topics or do you have other suggestions how to deal with them?
Thank you in advance for comments and advice.

Interested in more discussions like this? Go to the Lung Health group.

@sistertwo, here are a couple of other discussions related to Agent Orange:
– Agent Orange and Neurological Disorders: https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/
– Agent Orange/Dioxin related illnesses: https://connect.mayoclinic.org/discussion/agent-orangedioxin-related-illnesses/

However, it sounds like your main concern is with your husband's sons and their attitude. This is obviously weighing heavily on your mind and you wish it were different. As hard as we might try, we can't change people but only change how we respond to them. I wonder if @naturegirl5 might have some thoughts about this.

How does your husband feel about his sons' attitude? Are all of you able to have a pleasant time together when health issues are not discussed?

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Thank you for the info about Agent Orange. Both my husband and I need to study up on it more, because we don't know what the future will bring. I am just so proud of him and his efforts and wish his son's would realize how hard he is trying. I feel we have done everything possible and how he got to this point is really not a current issue. I'm overweight, too, so according to them I guess I can expect to be shutout when and if I ever need medication.
My husband is deeply hurt with the attitudes, not just about the health, but everything in general. A year ago we went to the kid's bday party and drove home feeling on top of the world with how nicely everything had gone. The next day we got a Dear John text saying that we should have played more games, we talked too much about our travels and not enough about theirs, we didn't talk to the girls enough, but then got heck for talking to the senior daughter and her boyfriend, and then major criticism for letting his health deteriorate. Basically it was how they had all the answers and we were too dumb to live (exaggeration on my behalf, but was how we felt). I did tell them they could see medical records and/or go to Mayo Appointments with him if they had concerns and reminded them that I used to take both my parents to all their major (and chemo) appointments and would seriously appreciate their involvement, too. I was never given a reply to my offer. For the past year the text messaging and calls have been virtually non-existent. The limited face-to-face exposure to one another has been tolerable, but the tension is there, especially for him. We feel we are damned no matter what we say or do. The one DIL and I were extremely close, but that is gone now, too. We do get told how "they make a ridiculous amount of money now" however. Which is interesting given I was the one who suggested and encouraged the career path she's in now and I am thrilled for them. A part of me wonders if they don't like that we are traveling, but for Christmas 2018, with husband's declining health, I thought it'd be cool to give the our kids and grandkids an all expense paid cruise – 7 days in a balcony cabin, but they'd have to pay airfare to MIA. I felt if each family paid their own airfare (coming from TX, CO and MN), we'd have a better chance of no last minute cancellations. The DIL I was once close to, thought that was horrible. Three of the 5 families took us up on the offer, which we did the January of 2020, before Covid.
I have also told the boys that if they spent time with their father, they'd see how he has good and bad days and maybe understand his situation a little more. I am sad to think that at any time, anyone of us could have life changes or death and there is hostility. I don't think it is (entirely) because of me (wicked stepmom), because they have all said that I am the one that has kept him involved in their lives and gotten him the best medical care going, etc., but DH is a lot like my grandpa was – couldn't wait to go home again. They do resent me for enabling him. What more can I do? Or, what shouldn't I be doing?

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Not sure of the whole situation. However, I am going to respond to your message with the insight of someone that has gone through medical issues and had parents that did also. The cause of my medical issues is not known.
My teenage son has said how he is glad that I haven't made everything about my transplant and health. Most of the time I discuss other things depending on who I am talking to. I am an Elder with my church, so often discuss the administration of the church with other members. I am one of those people that pray for everyone else and only discuss my health issues when asked or to say thanks to God when I get positive results or to let people know I really can't talk at the moment due to being at the hospital. When I was at my worst, I was still telling people that I was ok, even though I couldn't speak a full sentence without being out of breath with 5 liters of oxygen. I try to be more involved in current topics and how others are doing.
I also know that with my parents, us kids got annoyed with my mother because she would make food that was not on his diet (diabetic), which caused other issues. My mother would say that he doesn't like things that were healthy for him. When we gave him other foods that he were on his diet, he liked them.
DH's kids could believe that whoever is doing the shopping and cooking is not buying or making healthy choices. They also might feel that all that is discussed is medical issues and there is no interest in what others are trying to discuss or their interests. I know that my mother would start this and we would steer her to other conversations.
On another note, I am not sure if your husband can have acupuncture. Years ago, I had injured my back (twisted the spine) at work. No matter what I took, nothing would get rid of the pain. I was at the point that I could barely walk and people would want to help me. I went to a DR of Chinese medicine. He performed acupuncture and cupping on me 3x a week at first, reducing to once a month, until the issue was resolved after about a year. I would also receive therapeutic message. He was able to straighten out most of the spine and the pain was greatly reduced after the first month or two, and now I have none. I tried a chiropractor, but it didn't do anything for me but works for others. DH might might want to try acupuncture, a chiropractor and/or therapeutic message. It's none invasive and works for many, but can be expensive.

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@chickytina

Not sure of the whole situation. However, I am going to respond to your message with the insight of someone that has gone through medical issues and had parents that did also. The cause of my medical issues is not known.
My teenage son has said how he is glad that I haven't made everything about my transplant and health. Most of the time I discuss other things depending on who I am talking to. I am an Elder with my church, so often discuss the administration of the church with other members. I am one of those people that pray for everyone else and only discuss my health issues when asked or to say thanks to God when I get positive results or to let people know I really can't talk at the moment due to being at the hospital. When I was at my worst, I was still telling people that I was ok, even though I couldn't speak a full sentence without being out of breath with 5 liters of oxygen. I try to be more involved in current topics and how others are doing.
I also know that with my parents, us kids got annoyed with my mother because she would make food that was not on his diet (diabetic), which caused other issues. My mother would say that he doesn't like things that were healthy for him. When we gave him other foods that he were on his diet, he liked them.
DH's kids could believe that whoever is doing the shopping and cooking is not buying or making healthy choices. They also might feel that all that is discussed is medical issues and there is no interest in what others are trying to discuss or their interests. I know that my mother would start this and we would steer her to other conversations.
On another note, I am not sure if your husband can have acupuncture. Years ago, I had injured my back (twisted the spine) at work. No matter what I took, nothing would get rid of the pain. I was at the point that I could barely walk and people would want to help me. I went to a DR of Chinese medicine. He performed acupuncture and cupping on me 3x a week at first, reducing to once a month, until the issue was resolved after about a year. I would also receive therapeutic message. He was able to straighten out most of the spine and the pain was greatly reduced after the first month or two, and now I have none. I tried a chiropractor, but it didn't do anything for me but works for others. DH might might want to try acupuncture, a chiropractor and/or therapeutic message. It's none invasive and works for many, but can be expensive.

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Thank you! You have a good attitude. I think part of our problem is that my husband has a history of telling everyone how great he is doing, even if it is far from the truth. Then they get upset that he can't help them with moving or other physical work. I typically have to explain the real truth, but maybe I shouldn't. He still goes hunting, but they can see he parks the ATV close to his deer stand. Two years ago our granddaughter and grandson each got their first dear. DH wouldn't trade the memories for anything, but he wasn't able to finish skinning them and son had major attitude when he needed to do it. They leave DH to cut them, but he can sit for that. Everything is such a balancing act.
I will have to look into acupuncture. We had couple massages a year ago and he got a small blood clot (DVT) so he hasn't wanted anyone touching him now. It surprised me since he is on Eliquis.
How is your breathing doing now? 5 liters of oxygen sounds like a lot. Are you on it all the time or only at times? I love your attitude. Thank you.

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@sistertwo

Thank you! You have a good attitude. I think part of our problem is that my husband has a history of telling everyone how great he is doing, even if it is far from the truth. Then they get upset that he can't help them with moving or other physical work. I typically have to explain the real truth, but maybe I shouldn't. He still goes hunting, but they can see he parks the ATV close to his deer stand. Two years ago our granddaughter and grandson each got their first dear. DH wouldn't trade the memories for anything, but he wasn't able to finish skinning them and son had major attitude when he needed to do it. They leave DH to cut them, but he can sit for that. Everything is such a balancing act.
I will have to look into acupuncture. We had couple massages a year ago and he got a small blood clot (DVT) so he hasn't wanted anyone touching him now. It surprised me since he is on Eliquis.
How is your breathing doing now? 5 liters of oxygen sounds like a lot. Are you on it all the time or only at times? I love your attitude. Thank you.

Jump to this post

I was on 5 liters 24 hours a day (the max that my machine), except when I left the house I would be on 6 liters or at the hospital for tests on 8 liters. When I got bad, I was actually in the hospital on 30 liters before my transplant. Now I am great.
There is a difference between a regular message and a therapeutic message. Although both feel great. The therapeutic message actual is more of a physical therapy.

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