New here, and so glad there's a community

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New here, and so glad there's a community

As the title says, I just joined, and I'm so glad there is a community of people who are in the same situation I'm in.

A little introduction, my name is Chuck, and I've been taking care of my wife for about a year and a half, full time. We also have a child of 10 years, so I make sure he's taken care of as well. So, I am the rock in the family. We are staying with my dad, because his house was set up for handicapped access before my mom passed. This is another frustration.

She has multiple issues, most of which center around diabetes, and complications of. She can't walk anymore, or stand on her own. So I have to help her with transfers, and clean up after bathroom visits. We are starting to get up there in age, but way too young to be going through this (I'm 44, she's 48).

Things have been ok, for the most part. The occasional arguement/frustrating moments when her body decides to throw us the worst it has to offer, and typically late at night. Lately though, her meltdowns have become more frequent, especially when I dare to try to go out alone. I try to escape for a little while, because it's suggested that we (being the caregivers) need to have time to ourselves. I end up getting a guilt trip of "I've been couped up too". I've tried explaining to her, that I need to get away for a few, just as I enjoyed my weekends away when I worked full time. She then takes it personally, so the meltdown ensues. Then comes the catch 22 nightmare I've been living with. I hear her crying in the back room, so I go check on her. She decides that she needs to wallow in self pity, and wants to be left alone, so I become an a-hole for checking up on her. I decide to leave the room, because she's yelling at me to get out, and I become an even bigger a-hole, because I'm leaving (at her loud request) and not talking. If I don't go check on her when she's crying in the room, I become the world's largest inconsiderate a-hole, and get yelled at later because I didn't check on her. So, I end up feeling like an ass, because I've obviously done something wrong. I understand that she is even more frustrated than I am with what her body has done to her, but end up somehow feeling like it's my fault, and I shouldn't want to get out on my own at all, even for an hour or so. It's the post meltdown that gets me the most I think, out of all that. When she calms down, that's it, she feels better. Nothing gets resolved, and I still feel like I did something wrong.

This is just scratching the surface, I won't get into it here, because I could take up pages writing about this.

I really don't know what to do anymore. I'm tired of being the bad guy, I'm tired of the meltdowns every couple days, and I'm especially tired of constantly feeling like I've done something wrong.

A possibility

Hi Viking, 

You are doing a good job being her warrior! 
But the abuse is not something you should take. 

You love her still so stay and care for her, but maybe from an RV parked next to the house. 

A friend gave me this advice of what got her through when her husband was dying.  Mine, like yours is not dying.  We have to live with this draining our sense of happiness and strength for years and years to come.  YOU MUST PROTECT YOUR SENSE OF SELF to stay healthy mentally and physically and therefore feel like you have got what it takes to deal with this for as long as you must. I havent done it yet myself, but I am hoping it gives me the presence of mind to be a better, more relaxed, patient and loving person to the love of my life who just happens to be their "dying self" right now. 

I am also very happy to find a community where you can say the truth openly and maybe get some help that makes a difference. 




We're Not ALONE


My heart goes out to you and your wife. Each of you must feel alone and isolated. I hope you both will seek professional counseling to help you work through your own persnoal needs as well as how to keep your loving relationship/marriage healthy for years to come.  No excuses...we ALL need help sometimes (yes, I go to counseling and would not be here today but for it).




A little better now

Thank you for the responses. Luckily things have gotten a little better lately. She had been approved for medical marijuana, for her neuropathy, which has helped the general mood around here. She still has moments here and there, but not nearly as frequently. Unfortunately, we're still a bit secluded, and our lives revolve around her care. So there is that constant feeling that this will never end, but it is getting better.

Just joined. Maybe found what I need.

Four plus years of chemo, AML, bone marrow transplant and chronic gvh. Seriously, I love my husband but wonder if anything will ever be even close to "normal" ever again. I feel like I have no say over anything in my life.  All of our plans for the future...pfft.


I just had to quit my job so

I just had to quit my job so that I could be home taking care of my wife. She has epilepsy and for some odd reason, the seizure's have been more frequent again. The same thing happened last year about this same time. The drs. are unable to help get them under control. All they keep doing is changing meds and doses. Nothing is helping. She even has a VNS (vegas nerve stimulator) in her chest to help sometimes to stop them. I don't know what else to do.

I was wondering if anyone could tell me if there is anyway possible that I can be paid for being her caregiver and if so, how do I go about doing it.