Our new normal is not easy

StrugglingSoul

My husband has been sick for 4 years with limited lung function and in the past year he has gone down hill fast and is pretty much house bound. Just early 40's and our kids have gotten used to daddy being sick and not well so he can't play, and we all know he gets short tempered on his bad days, but now they are all bad days with the odd ok hours and each day it gets harder to remember the anger and frustration he has every day is not meant to be directed at us but some days it just seems to be too much to take. He doesn't like to discuss his feelings much with me or the older kids and I know I need to allow him to take charge and I am just here to support but I have a hard time some days knowing just what he wants or needs. I work and care for the kids the house, we have no aid from my husband and live day to day just surviving. The stress of just trying to keep our family afloat is difficult enough but not knowing how to help my husband is almost tearing me apart. I know he hates it when I have to leave to work and we try to have at least one kid at home to keep him company when ever I am out. Just needed somewhere to vent and any good ideas on how to help my hubby in this new normal for us, as difficult as it may be.

ddpekks

The new normal sucks, for sure......
I am so sorry you are going through this, but glad you came here to express it. I hope, like me, you find that it is good therapy.

My husband is going through some pretty bad stuff and I also have to go to work everyday. It's hard, but I have found that asking for help is not hard once you do it the first time. That is the secret to a caregivers survival in my opinion.

You need some alone time, someplace to scream, let out the emotions, or just relax and not look sickness in the eyeballs. Ask someone to stay with him while you go out and do not feel guilty about it. I had one friend here post that she would get in her car, drive down the street and scream at the top of her lungs, cry it out, go buy an ice cream and it all felt better for a little while. I go once a week and get a pedicure, or when I can't afford it, I just drive around for a little while. Find what works for you. This is the new normal and if you let it consume you, you will go mad.

You must take care of yourself if you are going to continue to be a good caregiver. We have to learn how (and sometimes, I know it is hard) to not take their anger and frustations personally. We have to constantly remind ourselves that they are lashing out at us because they love us the most. Oxymoron?

I have a new mantra. "Just keep swimming, swimming, swimming."

Hugs and hope for better times.
Deb

Noellesmom

new normal
Struggling, I'm sorry you and your family are going through this. It cannot be an easy thing for you, your husband or your children. He is blessed to have you in his life and I'm sure he knows that.

Could a treatable depression be part of your husband's problem? With so many issues, it surely would be something to consider. Either counseling and/or medication might be able to help.

You say you get no aid for your husband: does he not qualify for disability? I'm sure you have looked into that but if you were refused before, it might be worth another look.

As dpekks said, you have got to take care of yourself and your children. You need stress relief yourself. And the "keep him company" part doesn't fly with me. You need to put all the the kids in the car and go for a ride or just take a walk around the block. It is not that I am not sympathetic toward what your husband is going through (my husband currently takes four breathing treatments a day as well using a hand-held nebulizer that often or more), but it is you and the children I want to put the focus on.

If it is more than "keep him company" as in whomever is there must fetch and carry and do things for him because he is unable to do these things for himself, have an extended family member or neighbor or community helper step in for a few hours a week.

This is important. You do not have to drown. You do have to look for other resources.

And I know it is not easy.

Hugs. Just do it.

Cpnqueen

Dailey Struggle
I to have the same struggle...My husband is in his mid forties and the kids have learned to adjust to his moods. There is no easy way to deal with it. It is very hard to leave for work and on occasion get the phone call where he asks me to come home. My brothers and sisters have made sure I continue to go to an exercise class 5 nights a week just so I have that hour for me. Trust me it helps alot! Hope you can find a way to have an hour yourself to do whatever you need to do to keep your sanity.

LeeandShirley

new normal
I agree with ddpecks: mood swings aren't a part of the new normal that needs to be tolerated. It needs to be treated. Your husband and many cancer patients are depressed and need to be medicated for depression. You and your children are suffering, too. And the moods are not something that needs to continue. There is so much else to cope with and adjust to as a caregiver and constant emotional stress will take a big toll on you. Please encourage your husband have an evaluation for depression. The medications available do wonders to help him back to his new normal.