My husband was diagnosed with acute myeloid leukemia last year. We had to leave our home and move to Seattle for treatment. We spent a grueling 9 months there. My husband had chemo, radiation and then eventually a stem cell transplant. He had multiple ER visits in the middle of the night and was in the hospital up to two months due to complications. We finally came home in January of this year but he started to have trouble from day 1 when we got home. 6 weeks later after multiple symptoms I’m trying to get him to the ER and he refuses. Finally got his nurse coordinator to get him to go. He had to be scoped from both ends and they found graft vs hosts disease in his colon. So they put him on high doses of steroids. Now at home 6 days
later- he’s trying to do yard work. His transplant team in Seattle told him specifically that he can’t do yard work for a year because his immune system is not developed yet. Anyway he says he won’t listen to the doctors. I’ve been doing the yard work on 5 acres for him but it’s not up to his standards because he’s a perfectionist.
The thing is I can deal with all the stuff his disease has brought on but I can’t deal with his constant resistance to anything that has to do with keeping him well. It’s taking a toll on my health. I told him that I will leave if he doesn’t cooperate with the doctors. I’m fighting for his life and he’s doing everything to undermine that. I’m at my wits' end.
I have a stubborn one. He has his own way of thinking right or wrong. Hard to change his mind once he is set on something. I have already gotten to the point his life not mine.
Just tell DH that you love him and will support him but if he does not care if he lives or dies then you can't worry about it either.
I would sit with him and truly discuss what he wants, how he is feeling. I don't know what his prognosis is at this point; you haven't said. If your husband makes choices to go ahead with gardening I am assuming you are afraid of the weakened immune response and a scratch or cut leading to infection, possible sepsis, and death. I would tell him what you are afraid of. I would ask him if knowing this possibility does he still wish to risk his life in this way. I would tell him you are terribly afraid of losing him, of his not clearly understand all he is risking in this behavior.
You may be surprised at his response. He just may tell you that he feels he will not beat this disease, and he wishes now to do the things he LOVES to do while he can do them. And that this is his decision for his own life.
Don't argue. Don't fight. Just listen. And understand that this is his life.
I was a nurse when, 35 years ago, I got breast cancer. I pretty much did things my way. Not the RIGHT way, but my way. I ditched the two drugs I was to take by mouth. I took the one infusion. I didn't mind the "don't use the right arm for gardening" injunctions. I refused radiation but accepted 5 course of chemo and not the 6th. I thought the "be positive stuff" was total nonsense. And yet here I am 35 years later , what with having had two positive lymph nodes, and mean as ever.
We get to make our own decisions. I feel we should share our feelings with the person who loves us so much; we owe that person that much. But I think you will get farther letting your husband manage his own illness. The truth is that when we get cancer there is SO LITTLE we are in control of anymore, that we sometimes make poor decisions just because we need to feel some sense of control over something.
I wish you the best. This is terribly hard. Get him good gloves and chaps to wear. Garden with him and take joy in the outdoors.I wish you the best.
Finally she gave up. If he didn't want to get hearing aids, fine, but she no longer repeated anything for him nor did she talk louder.
So.... he didn't want to use a walker. Fine, but when he fell, and couldn't get up, she handed him the phone to call 911 and wait for them to do a lift assist.
He didn't want to wear depends. Fine, but when he soiled himself - she handed him cleaning products for the chair, the floor, had him rinse out his own clothes, and do his own laundry.
he didn't like what she made. Fine. But she didn't make anything else so he had to or eat what she made or not eat at all.
He didn't want to give up brandy in the evening even though it increased his fall risk. Fine, then when he fell - she handed him the phone to dial 911 for a lift assist.
When he didn't cooperate with his DR orders she gave up trying to plead, persuade, demand, etc. She let him make his own decisions and have his own consequences.
When a fall resulted in a trip to the ER, she didn't go to the ER with him. And she left him there as long as possible, THEN picked him up to go home.
You can't persuade them, but sometimes they come around if you no longer enable them and no longer argue with them. My dad finally got hearing aids, finally decided to use a walker, finally decided to use depends... but it was his choice after he had to live with consequences.
My mom refused to follow the doctor’s orders during chemo. What was the offending order? Drink at least this much water/liquid a day. What was the result? Impacted bowels, a few ER visits, ruptured bowels, colostomy bag, lots and lots of crying. The whole time saying “No! I won’t drink more water! The doctors are idiots!”
He must have somewhat of a positive prognosis if they told him he can't do anything for A YEAR--so maybe he needs to be reminded of the prognosis, and that he's working against it by his behaviors. It's a change in perspective, and he might need to change his.
The day a doctor told my husband that he could do little things if he wanted, I wanted to throttle her. She was brand-new to my husband's very complicated case, her first time seeing him, in fact. When we got home, he tried to shove a dresser across carpeting and lift a large flat-screen. He immediately failed miserably at both and ended up in more pain. Neither of those things were "little things" and he wasn't capable of even "little things" without increasing pain and the risk of additional fractures from "innumerable" bone tumors.
They get tired of treatment, tired of being sick, tired of being less than who they once were, and tired of feeling useless.
(A quadriplegic to whom I gave caregiving told me one day: "Some days I just want to turn a wrench." I think we can all appreciate that on some level.)
They don't understand the impact their behaviors have on their caregiving loved ones b/c they are the ones fighting for their lives. I once, rather adamantly, told my husband: "Your cancers don't just affect you!"
My husband wasn't physically able to do anything, but he didn't mentally reach the point of accepting that for a while. E.g.: It was standard procedure that he'd wait until I came around to his side of the vehicle to help him; one icy day, no sooner did I get out and look over---he wasn't in the passenger seat but no where in sight, either. Unbeknownst to me, he'd decided to get out on his own, and the second his foot hit the icy drive, it took him down. I found him lying on the ground and had to scramble on the ice to get him up. He suffered an injury from the fall. He fell quite often, but that one was clearly on him.
I think you'll find he'll come around, especially if something he attempts works against him enough. I know it seems like a lifetime to you already, and it must feel that way for him, and maybe he feels he's had enough--if he can't do basic chores after all the grueling treatments, what's the point?
One day in knee-deep snow I struggled for 20 minutes to move a very heavy, awkward object. As I neared the house, I saw my husband staring at me through a window; rule was he was always supposed to stay on the couch whenever I wasn't near him. When I got inside, I found he'd been crying watching me struggle through the snow. I was having to do all "his jobs"...and it hurt him not just b/c I had to do these things, but also b/c reality dictated that he couldn't do them.
If your husband is anything like mine was--a workhorse--it's very hard for them to accept.
You can't change him, but you can change your response to his nonsensical behavior. Then and only then will you have a chance of him changing his ways.
I wish you the very best.
I also have decided to make my health a priority. I already have my own health problems- autoimmune issues triggered by my having to care for my parents back in 2011-2014. Both were failing and lived in Arizona. My dad would not move to Washington so I was flying in every 2 months to help them. I had my own family that I was raising and I missed many holidays, birthdays and almost missed their graduations taking care of them. When my dad agreed to move I had to remodel my house so that it was wheel chair accessible. My mom was a complete invalid and died right before I was to move them. My dad had pulmonary fibrosis and was on oxygen 24/7. My dad lived a year and 3 months with me and died the day before my future daughter-in-law’s bridal shower.
Anyway, my husband’s illness was not my first stint at caregiving. However, after dealing with my parents situation I never wanted to be under that kind of stress again, yet here I am. Definitely my husband’s situation is 100x more stressful than my parents if that’s even possible.
Thank you for all your responses about the steroids. I think my husband was already like that before he took the steroids but certainly the drugs did not help matters.
Do you think perhaps he has decided to take risks with his health because he hasn't gotten much to lose?
Or maybe after months and months of grueling treatments and being so close to death's door that he wants to do something that makes him feel like he is living?
If you haven't, I recommend you have a heart to heart talk with your husband. What does he wanted to do with the rest of his life?
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