You know, I'm aggravated now...(vent)

[minkydog]

Okay, some of ya'll know that DH has severe lung disease and is completely disabled. Recently his lungs have gotten worse and he requires supplemental oxygen 24/7 now. Of course, he is very fatigued due to low oxygen levels. I try to be very patient and make things easier on him by doing the cleaning and cooking, etc. But lately it's really grating on me.

Here's the problem: He complains all the time about feeling tired, feeling bad, feeling woozy, not having any energy, but he won't wear the oxygen. He starts up whining and I say "Where is your oxygen? It will make you feel better." Sometimes he will sheepishly go put it on and of course, he immediately feels better. But sometimes he just wants to complain. I know he feels bad and he hates that his life has changed dramatically, that he has lost so much. I know he's angry and scared for the future--we know he's eventually going to die from this. Truly, I am sympathetic to him and I do what I can to lift him up. But damn, I can't do it all.

It makes me angry when someone complains and complains, but won't do what they need to do to help themselves. And today I told him that. I tried to be nice and even-handed about it, but of course he got his feelings hurt. <sigh> When he does this stuff I feel like his mother! And I'm so not feeling that

I'm wondering if maybe I can get him to go talk to my therapist. I'm sure there is an element of depression and anxiety going on. He takes meds for both. I get so tired of him pushing himself to do laundry or yard work, and then he's too exhausted to do things like drive to the store to pick up meds or even eat dinner with the family. I don't even mind his 3 naps/day. But I want to scream when he comes up from the basement hauling a big load of clothes, complaining that he's breathless and light-headed. Yeah? And? Why are you even *in* the basement? And where is your oxygen?

I guess it just angers me because he ends up making more work for me. As if I didn't already have enough, with Christian. <sigh> <sigh>

 

[JerseyJanice]

"Helpful" husbands create such problems sometimes.

I'm sorry for everything you're going through it. I don't know how you do it, Minky.

 

[minkydog]

"Helpful" husbands create such problems sometimes.

I'm sorry for everything you're going through it. I don't know how you do it, Minky.

I come to the DIS for a glass of whine

 

[handinpocket]

Sounds like he is on his last leg, maybe you should just be grateful he is alive.

 

[minkydog]

Sounds like he is on his last leg, maybe you should just be grateful he is alive.

I don't think he's quite on his last leg just yet. You'd be surprised at how accomodating the human body can be. He's just having a downturn. I am grateful that he's alive, I'm just tired of the complaining when he doesn't try to do things to make it better. I'm not trying to get him to walk the dog or play ball with the kids or even run a vacuum cleaner. Just put on the dang oxygen!


ETA: He just did it again.

 

[Tinijocaro]

She's got a tough job that must wear on her daily, I'm sure she does it with love but when she feels that she has no more to give and he's not even doing what would help him, I'd be frustrated too. Thank god she has us to vent to.

PP-your post was cruel.

 

[shortbun]

I feel ya. Mine does the same thing on a much smaller scale. but for pity sake, if your back is achin and your legs are tired, why would you mow the lawn again for the third time this week and then complain? I think it's a man thing. Macho, ya know? I hope somehow you guys can get things levelled out and get on a manageable routine. whine away, would you like some wine with that? Thank goodness we have a (semi) safe place to vent when it's just not ok to do it anywhere else.

 

[bballmom56]

She's got a tough job that must wear on her daily, I'm sure she does it with love but when she feels that she has no more to give and he's not even doing what would help him, I'd be frustrated too. Thank god she has us to vent to.

I agree. I have followed many of minkydog's threads and I certainly admire her for all she does. She more than has her hands full with Christian and her DH and yet still seems to keep going. She just needs to vent once in a while.

 

[3prettyprincesses]

It sounds like very frustrating circumstances for you both. Maybe he's in denial about his limitations? I know this is nothing like your scenario but when we last went to Disney with the in-laws, my f-i-l (who's 80) refused to get an ECV. He wanted to go commando through the parks like a teenager. I pleaded with him to get one if only to make him more comfortable. Nope, he wouldn't have it. Then on our last park day, he nearly passed out at AK and scared us all to death. I think it's just hard for people who have physical limitations (either from age or disease) to accept them. Perhaps your idea of having your DH speak with your therapist is a great step. So sorry that you have to deal with so much. Best wishes.

 

[dallastxcpa]

Speaking from experience when your life changes and you can no longer do things you did before it's hard to let go. It's like admitting defeat.

You are amazing for having the patience you've had so far. Just try to keep a positive attitude and take a deep breath. Your's is a job that is 24/7 and I imagine you don't get a ton of breaks.

 

[minkydog]

Prettyprincesses, I can so relate. When we go to WDW DH needs an ECV and plenty of naps. I have to just about beat him with a stick to get him to do it! Yesterday, I needed to get groceries. DH wanted to go get something to eat,then accompany me to the grocerie store. I was leery because eating makes him very fatigued(I know, sad isn't it?) He did okay in the restaurant. As we headed to the store I mentioned that I expected him to use a store ECV. DH has nearly passed out grocery shopping. Well, he wouldn't have it! So I said he had to take his oxygen in with him. He didn't want to do that So I said I'm turning the car around and you can just go home. Well, he didn't want that either! After we got to the store he sat in teh car a bit, then came inside with his oxygen. Sheesh...

I really appreciate the kind words, ya'll. I try not to be a whiner, but some days I just hit a wall, ya know? I know this must be harder on DH than it is on me. And I know that it is partially a macho guy thing. He HATES being disabled and he HATES to see me working around the house, doing things he can no longer do. It makes him feel guilty. He often calls himself a wimp, a slug, and a weinie. He asks me if I want to stay with him--we've been married 29 years. I have to mow the grass when he isn't home. If he sees me doing it, he'll come out there and following me back & forth across the yard. And honestly, I don't mind doing these things at all. I don't expect him to do house & yard work because I know it makes him exhausted and weak. I really try to make him understand that it doesn't make me think less of him that he can't do the things he used to do. I think he's just sad and angry and frustrated

But dang,he could just put on the oxygen!

 

[bumbershoot]

(that's a hug for each of you)

 

[3prettyprincesses]

Prettyprincesses, I can so relate. When we go to WDW DH needs an ECV and plenty of naps. I have to just about beat him with a stick to get him to do it! Yesterday, I needed to get groceries. DH wanted to go get something to eat,then accompany me to the grocerie store. I was leery because eating makes him very fatigued(I know, sad isn't it?) He did okay in the restaurant. As we headed to the store I mentioned that I expected him to use a store ECV. DH has nearly passed out grocery shopping. Well, he wouldn't have it! So I said he had to take his oxygen in with him. He didn't want to do that So I said I'm turning the car around and you can just go home. Well, he didn't want that either! After we got to the store he sat in teh car a bit, then came inside with his oxygen. Sheesh...

I really appreciate the kind words, ya'll. I try not to be a whiner, but some days I just hit a wall, ya know? I know this must be harder on DH than it is on me. And I know that it is partially a macho guy thing. He HATES being disabled and he HATES to see me working around the house, doing things he can no longer do. It makes him feel guilty. He often calls himself a wimp, a slug, and a weinie. He asks me if I want to stay with him--we've been married 29 years. I have to mow the grass when he isn't home. If he sees me doing it, he'll come out there and following me back & forth across the yard. And honestly, I don't mind doing these things at all. I don't expect him to do house & yard work because I know it makes him exhausted and weak. I really try to make him understand that it doesn't make me think less of him that he can't do the things he used to do. I think he's just sad and angry and frustrated

But dang,he could just put on the oxygen!

Oh goodness! You made me cry. You poor thing, both of you. What a cruddy situation to be stuck with. It really sounds like he is indeed having trouble accepting that he can't do things like he used to. I can only imagine what a horrible feeling that is. And you are working so very hard to hold everything together. Of course you're frustrated. I just feel so terrible for you both. I'm glad you have the disboards then to vent your frustration. You deserve that whine with wine! Not to sound selfish, but are you able to schedule some time for you at all? Sometimes just getting away for a couple of hours can do wonders for feeling refreshed. Works for me when my DD's are driving me crazy! I'm sending you best wishes and prayers minkydog. Your DH is lucky to have a wife who is taking care of him in sickness and in health!

 

[Scurvy]

I'm sorry, Minkydog. I can understand why that would be very frustrating.

 

[momof1princess]

i'm so sorry my grandfather had lung disease as well, and refused to admit his limitations. we became very frustrated at times, but did our best to understand how he felt. i know it's hard on your DH, and you. you're an amazing woman, and i admire your tenacity and spirit.

 

[minkydog]

No, I don't think it is selfish at all to want some time for yourself. As a caregiver, both personally and professionally, I know how important it is for a mom or dad to have something for themselves. I have a combination of things that I do outside of what I do at home. I work part-time as a school nurse during the school year. It doesn't pay much but I get outside my home during the day and do something I love. I volunteer at a local food back on Tuesday, packing boxes for needy families. It's hard work, but i love doing it. I get a massage periodically (well, every 2 weeks since we had our wreck in April.) And I take DD17 out for Girls Day Out about once a month and we eat Chinese food & get pedicures.

Thankfully, we have a nurse that comes in to take care of Christian now. If we didn't have our Samuel I don't know what we'd do. Samuel makes it possible for us to do things with our other kids, to take a break from the caregiving, and to give DH a needed rest.

 

[Mom-to-2-Princesses]

My FIL had a lung disease (Idiopathic Pulminary Fibrocis) and also NEEDED oxygen. Even though we read all the info that said using the oxygen machine didn't weaken your lungs or make you more dependent on Oxygen, that's still what he still "believed" inside. So in his mind if he didn't take the oxygen (1) he wasn't as sick and (2) he wouldn't get "addicted" to it.

I'm sorry he, and you, are going through this. I can't imagine a worse feeling than having trouble breathing. Or maybe I can, watching the person you love going through it.

 

[Planogirl]

It sounds like he wants to do more than he should and he is probably as frustrated in his way as you are. I wish both of you the best.

 

[Pea-n-Me]

I admire your strength in all you have to deal with on a daily basis.

If you remember from Nsg 101, much of it is probably about having control when he's feeling he's lost most control, even though in the long run, even he knows it doesn't make sense for him not to wear his 02. The control thing, to him, probably trumps it. My suggestion would be to try to turn it around so that he comes to wearing it of his own accord, and not because you're telling him to. Let him have control here (even though it'll be painful for a while ).

I know it's not exactly the same, but I never had a real appreciation for how true exhaustion feels until it happened to me twice in my adult life. Once, when my HCT dropped from 37 to 17 (childbirth) and I literally could barely move. And a second time when my HCT dropped to around the same level (chemo) and again, I could barely move. I cannot imagine how it feels to live like that every day. At least I knew mine would turn around and I'd feel better eventually.

I hope you can work it out with him.

 

[minniecarousel]

aw, minkydog, you can come here and whine anytime you need to! That's what we're here for.

Prayers for you both.