Caregivers Support Group

Hi,
No, on the contrary, you are an amazing human being!! Few sisters would do what you do.

Chronic Pain is awful, and your sister would benefit from PT and talk with a psycologist, to learn how to make peace with pain. When my pain started I was bitter and ungrateful,,,I've learnt,,we live happy quiet life , everything you are feeling ,she feels. You also sound depressed and need to take care of that.

usually pain meds, take away the unbearable part of pain, that's it,,,pain still there, you need to get all your motivational tools out to help her help you.

Alma

Hi Chrissy,

You're definately not an awful person for feeling the way you do. You just happen to be caught up in a bad situation. As a long time caregiver, I know I have wanted to scream or yell at my wife too when she gets into the constant complaining mode, but I hold back my frustration and just walk away into another room or outsdie for a few minutes.

I dislike being in the position of a full time caregiver, but I really hate all that my wife is going through that has put me in this position. She is the one that is truely suffering. I'm just on the sidelines doing for her what she can no longer do.

You are in the right spot on this DS site. Every caregiver here understands what you are going through. Caregiving is the toughest job in the world, and unfortunately, it's normally not a job we applied for.

There is help for you out there, but you have to do the contacting. Call your local hospital(s) and ask for Home Health Services, and see what they have to offer. Contact your County Health Agency. They can normally provide imformation on services in the area that may be able to help. If you are a member of a church, don't be afraid to ask for help through your church leaders.

I don't see an awful person for feeling as you do in your caregiving role, I see an angel doing a thankless job.

Hugs, caring1

Chrissy, the one thing I have learned in the very short time I have been here, is that it is all normal. You have written of something I think about all the time, and NO we are not horrible people for it.

I do feel horrible that I did tell my husband one day, "For crying out loud, can we just have one day that's not all about your problems!" I was having a colonoscopy done at the time, but I don't think that was much of an excuse. I tend to hold my tongue a little better than that. I guess I slipped. Oops.

Suffering can lead to some egregious behavior, and the person may be convinced that tormenting others is the only way to feel some relief. Shedding light on that fallacy can be supremely difficult. The care recipient can interpret the "always nice" behavior of the caregiver as being too detached, not caring enough to be emotionally invested in the suffering. Such relationships can be a real mess! It can be worse, when both parties feel stuck with each other, one by need and the other through guilt. It's no small task to gently guide such a relationship in a positive direction.

You guys are great! Thanks so much to all of you for your concern and kind words. I am so thankful I found this group!

Oh Chris- I SO know how you feel! I have been married to my husband (who is in a wheelchair) for 20 years. He was always independent until he developed bladder cancer 6 years ago. A few rounds of chemo and surgery for an ileal loop went well (though now he has a urine bag on his leg which yours truly gets to change regularly :/). Then he burned himself on a heating pad (which I told him NOT to use D:) on the bottom of his heel!!! (it crumpled under him and he fell asleep on it) it got infected and eventually made its way into the bone- they were talking amputation but so far we're hanging in there with the foot but it's NOT healing properly so we did vascular tests and found out he had a blockage so he had a bypass done. THEN he hit himself in the head with something he was buffing on a buffer and got stitches and plastic surgery on his head (he almost last an eye!!!) anyways, that finally healed with a minimum of scars (yay!) As if all this wasn't enough... he now has a decubitus (sore) on his butt from the wheelchair!!! So we get a new Roho cushion and it doesn't improve! so we get a NEW higher profile Roho cushion and it's still not healing... so we go in for surgery again for a "flap" so now I'm nursing both that and still dealing with the foot (Doctor is saying that we may need another skingraft on the foot- oh forgot to mention the first one....that was in between the head wound and the decubitus D:) Wow- I'm rambling- sorry... so... yeah... I'm overwhelmed and feeling more like a nurse than a wife at present (we have to sleep separately as he needs a special "floating mattress' for his decubitus). He is cranky and takes it out on me and I feel SO guilty for getting aggravated with him because I KNOW he is going through a lot at the moment but it's still really hard and sometimes I feel so alone..... but I read your post and wanted you to know that YOU are a WONDERFUL and loving sister and maybe you need to steal a few minutes here and there to 'renew ' yourself and remind yourself just how wonderful you really are (I make jewelry or crochet or go for a walk...) Maybe your sister could talk to a therapist too- is that possible? I wish my husband would... but he won't :/ Thinking of you, Melinda :)

Melinda,

Thanks so much for your post. I'm so sorry you're dealing with so much all at once and I know how stressful that is. You too are a wonderful woman and wife and I hope your husband does realize how fortunate he is to have such a precious gift....YOU!

Along with caring for my sister, I am also helping to raise her 9 yr old daughter. I love my niece dearly, but she is an only child and completely spoiled rotten! I have three grown kids and I never tolerated nor allowed them to disrespect me when I was raising them. My niece, however, is allowed(by her mother, not me!) to be sassy and disrespectful and my sister shrugs it off. I am raising this child pretty much on my own and this sort of behavior is not something I am going to allow! Its a constant conflict when it comes to disciplining my niece and my sister becomes angry when I put my niece in time out or take away privaledges when she acts out.
I have days that I just want to run, but I'd never actually do it. I am however, going to stop feeling like I have to walk around on eggshells when it comes to my sister. She's a wonderful person, but she does have a selfish side and forgets the sacrifices I've made for her and her child.
As for therapy, she's already doing that along with being under the care of a psychiatrist. She's on meds for depression and anxiety. I think I need to be on some too!

We have taken on a job that lots of people would never even consider. We have given up most of our freedom and all of ourselves for the people we love and care for. We are essentially earth angels...lol. Well, sometimes I feel like I have a devil inside trying to escape! lmao!

I simply want my sister to step back and look at the BIG picture! She is lucky and needs to be a little more understanding. I truly hope she'll do this on her own without me having to confront her.

Hang in there....you're a wonderful person and thank you so much for taking time out to reply to my post. Take Care!!

Have you tried talking in the chroinc pain group? You'd be surprised how often those "mounds of pain killers" do very little.

Hi

Although having young children help with caregiving might be a sensible subject, the daughter can help and they can take care of each other, maybe living them alone for a few hours to begin. After all the mother will be the daughters responsibility once she is an adult.

Another thing will be, let the father take custody of the child.

Alma