The cost of ego

This week I connected with a friend that I haven’t seen since March. We did the occasional “how are you?” emails and the answer was always “fine.” When I met up with her, she told me her husband isn’t doing well. He has a progressive fatal disease and almost overnight his lung functioning dropped 50%.

I was shocked and I wasn’t. We have been friends for many years. She and her husband are in their upper 80s but you wouldn’t know it. They were very active and she still is. Sharp as a tack. Can’t pull anything over on them. He did a lot of very physically demanding projects like fixing roofs, cutting down trees and building sheds. That was before.

He was diagnosed about two years ago. He went into denial. He told his wife he was going to beat it. Based on where he was in the progression he had a two to five year survival rate. He didn’t listen to anyone. He tried to bury himself in physical activities. He worked until he couldn’t breathe. He climbed trees. He could have fallen. He didn’t have much strength. He took such long walks that he had a hard time getting home. She’d find him sitting on the curb trying to catch his breath.

Worst of all he, refused a drug that would have slowed the progression because it was expensive. He wasn’t going to waste any of his money on healthcare. He wanted it to go to his kids. It would have cost him $3,000 a year.

His doctor put him on oxygen. He was so embarrassed when the truck delivered it he made them pull around the back where the neighbors couldn’t see. They brought the equipment in the back door.

This sort of idiot behavior went on. His wife occasionally railed at him because he would frighten her. Sometimes he couldn’t breathe and had to crawl to his oxygen tank.

I don’t understand this behavior at all. He is very selfish. His wife has to keep an eye on him in case something happens. It was the worst case of denial I’d ever seen. There have been several close calls.

At this point he can’t walk steps, lift any weight (not even a half gallon of milk), yet he tells her he’s going hunting in the fall.

My friend is strong. When she told me this she said they weren’t focusing on the “shudda, cudda, wudda” outcome had he gone on the drug two years ago and cut back on his extreme activities. I have often wanted to slap him on the side of his head. My friend has suffered because he is bullheaded. I wonder at what point he will realize that he has put her through hell and accomplished nothing. His disease has continued to progress.

According to her it’s not dementia. It’s who he is. I can only give her an ear to talk to and friendship. She is fortunate she has a supportive family who has helped out but it’s wearing her out. This is a side of care taking I hadn’t seen. I sure hope I don’t get like this. If I do, smack me upside the head!

72 thoughts on “The cost of ego

  1. This man sounds like my mother-in-law. My father-in-law had Parkinson’s and Congestive Heart failure. He didn’t have dementia, but sometimes he got confused over details of things, so she had to give him his many different medications. She would see that he was getting better, so she would stop giving him medicine, but his meds were what was making him better. He landed in the hospital 3 times. She refused to believe he had a terminal illness and insisted he was getting better.

    She was always like this. She never faced reality. I’m a realist, so she and I butted heads often. In my blog post about her after she died, I wrote, “She didn’t always see things as they were, but as she wanted them to be.”

    Sounds like that is what your friend’s husband is doing. It’s a difficult life when someone we love who is perfectly sane refuses to live in reality, especially when sickness is involved.

    Liked by 1 person

  2. I know someone whose type of dementia doesn’t affect his memory, just his self-awareness of safety and his own abilities. He may know something is unsafe, but does it anyway because he doesn’t know how not to. Your friend’s husband reminds me of him. Or, actually, it could be that he feels he doesn’t deserve expensive medication, that he is unworthy. Sometimes this drives a lot of self-deprecating actions. In any case, I’m glad your friend has your support; it sounds like she needs it.

    Liked by 1 person

  3. That must have been very frustrating for you to hear this update but she’s lucky to have a friend to confide in. I feel for her! sometimes people in the center of the storm don’t realize they’re the storm and they’re causing others collateral damage. Dealing with that right now with my FIL ~ super stubborn, a smoker with COPD and an incessant need to be hard-headed and right, even when he’s usually wrong. I know that, secretly, he’s terrified and doesn’t have the words to say so.

    ~Here’s to NOT being like that guy!

    MJ

    Liked by 1 person

  4. You’re a good friend to listen to her! It’s sad that he’s being an idiot and putting her and himself through all of this. I’m sure if he asked his kids they’d much rather have him around and healthy for more time than have this and a couple thousand bucks.

    Liked by 1 person

  5. Wow, his wife deserves a medal for enduring this type of behavior. I’d think that $3,000.00 is a drop in the bucket for a cure – to heck with the kids is what I say (of course I have no kids, so easy for me to say that, but hopefully they would have wanted him to have a quality life not benefit from his $$ I would think … and hope). I watched my neighbor/good friend deal with her COPD. I watched her go from what I’d call a “gadabout” who could never stay home in 2010, to being tethered 100% of the time to an oxygen tank within four years. Toward the end, she’d stand up and her legs would buckle beneath her as she was so weak they could not support her. How foolish this man is … your friend is a saint.

    Liked by 1 person

  6. When I first started to live with my mom to care for her, I was lucky enough to be in therapy. My therapist told me that care givers should know what priorities and standards they will use in care. For me it was to never make a decision for my mother that she should make fof for herself. To recognize that her last years were still her years not mine to cling on to her. I was reading your post and realized how that was an easy choice because my mother always considered how her actions impacted me as her caretaker. I may well have run away screaming had I been caring for your friends husband. It’s not easy to explain how horrifying it is to see someone constantly at near suffocation, but to know its largely self inflicted would exacerbate it.

    Liked by 1 person

    • She has had several situations where she thought he wouldn’t make it because he couldn’t breathe. It must be incredibly painful to see. Your therapist was right. We tried to “guide” my mother to a simpler living place (no steps, first floor bathroom) but she wanted to die at home. In the end that’s what she did.

      Liked by 1 person

  7. A listening ear is just what she needed at this time. And – we hate to say it – but $3000 for a year’s worth of cancer meds is probably not that much…

    Liked by 1 person

  8. You’re a good friend to listen and offer that ear, which probably means so much to her. I suspect this man was always bullheaded; the public persona, as we know, is always better than the private one. I hope he starts to listen to her now. – Marty

    Liked by 1 person

    • He has to because for the most part he is not physically able to do a lot of things. I’ll be interested if he goes hunting. He can’t walk distances nor can he carry a gun. Maybe one of his sons will give him some sort of experience.

      Liked by 1 person

  9. On his own terms. Maybe he was using tree chopping to convince himself that he still had “it”…or maybe he thought it would push him over the edge and he wouldn’t have to go through the terrible downhill slide and becoming bedridden and totally dependent.
    But it’s terribly unfair to do either without realizing what it is doing to the person in his shadow watching and trying to gain footing with what is coming.
    Take the darn meds if quality of life isn’t impacts ( and maybe improved). Chemo, is another story – each is effected differently- we had to respect a far too young niece with a brain tumor and recurring cancers – she fought determinedly for a long time until it was just too difficult – chose a bit of better quality of life without treatment rather than that brutal continuous fight – she said it was taking too much a toil on her close family – and she was tire.
    You are kind to be there and listen – I know you give support without guilt trips or lectures. Friendship is harder during this virus time.
    A gold star in your crown – as my grandmother used to say when you did a kindness expecting nothing in return. A gold star.

    Liked by 2 people

    • Advice is the last thing she needs. Kudos to your too young niece. Hope I have the courage to do that. I had a friend who was 70 with a brain tumor. She fought for a few months but the treatment was brutal and she got tired. She made a choice and we all respected it. Going back to my other friend — what makes it even more crazy is that they have the money for the medication even if it were $30K. People who came out of the depression, even if they were children, look at money differently.

      Liked by 1 person

  10. Maybe when you’re dying . . . it’s “OK” to be a little selfish and do what you want to do with the time you have left (even if it shortens your lifespan a bit).

    That said, I wonder if HE would have made the choices he made if he were not in denial about the fragility of this life?

    Liked by 2 people

  11. I know some people want to go out on their own terms, but his denial is worrisome. I sympathise with you and your friend. It is a tough situation and I am glad that you are there for her.
    A friend’s BIL has just passed away after a hard battle with cancer. He refused chemo and was happy to chat about everything that was going on with and within his body. His wife, my friend’s sister, would not discuss it at all and kept busy, doing all the care work herself. His last few weeks were pain-ridden and they were unable to get a supply of morphine to ease his suffering.
    Now he has passed away, she still refuses to talk about it, does not want comfort or condolences, and generally keeps herself to herself. Everyone grieves differently and she is the sort who martyrs on regardless. My friend is anxious that when it finally hits, she won’t be there to support her because of the virus.

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  12. I’m glad you were there to listen to your friend. It was good of you to be there for her. She told a sad tale, but one that I suspect plays out over and over again. Some people just cannot understand how what they do will impact someone else.

    Liked by 2 people

    • There were several health crises when he did something he shouldn’t. She thought he was going to die several times but wouldn’t let her call for an ambulance. He could have chosen a lot of fun things to do instead. He should be able to spend his last days doing what he wants to do but they shouldn’t be almost suicidal.

      Liked by 1 person

  13. Oh boy. This one hits close to home as I was caregiver for my late husband during his terminal cancer. All I will say is that it taught me to never do this to another person should I ever be in a situation where someone has to look after my well-being while my health goes downhill.

    Deb

    Liked by 1 person

  14. Wow your title of this blog is right on point. But, I think it is not just ego, it is a self-centered and selfish thing for your friend to have done to his family. I wish your friend well…it is not an easy road she is and has traveled on.

    Liked by 1 person

  15. When a doctor gives you a specific time frame for your life expectancy, you can either lay down and take it or choose to give life all you’ve got to give while you’re got it. I personally would consider in earnest what any treatment – regardless of cost – will do in terms of prolonging my life in the quality to which I am currently enjoying it. In my humble opinion, he’s lived into his 80s and has come to grips that his life in this realm is closing its chapter. The wife can either fret and worry herself over every little thing or join him in compromise that he continue to do things he enjoys but at a little bit less, like length of walks, etc. I feel for her fear and anxiety, but I also feel for his right to choose how the final chapters of his life’s book are written.

    Liked by 2 people

    • I totally agree with you but he’s not taking shorter walks. At this point he’s not walking. What I gather from her is that the extreme overexertion and total disregard of doc’s orders at the beginning of his diagnosis (cutting down trees, climbing roofs, going to a hunting cabin with a wood burning stove — a no-no for lung issues) further damaged his lungs and shortened his life. It’s one thing to chose that for yourself but to put your family through it is another. Her anxiety is natural. She is very strong and not crying or clingy. She’d be the first to tell you that they had a great life. She never wanted him to stop doing what he enjoys but wishes he would be more careful about physical activities. The doc didn’t give a specific time frame. He said it’s different for everyone but the published progression is 2 to 5 years based on how well you take care of yourself. He didn’t.

      Liked by 1 person

    • She is better than I am but then again she has lived with him for 60 years. Other than making sure someone is always around to “check on him” without his realizing it, she’s gotten out a little. Fortunately this is all coming to a head during the pandemic so there aren’t social obligations and people are staying “put.”

      Liked by 2 people

  16. Such a sad story…what misery he is putting his family through when he could be using this time to be with them and say and do the things one might want to do when you know the end is in sight. What a shame.

    Liked by 1 person

  17. That is so frustrating. So many people simply can’t see the impact their actions have on their loved ones–or on anyone else for that matter.

    I’m glad she was able to talk to you. You’re right, done is done, and there’s no point in recriminations. Although he does serve as a cautionary tale.

    Liked by 2 people

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