Caregivers Support Group

i don't know how bad your husband has become physically i mean, mind you this is only a suggestion, but they say someone that has been like baseball player orsome kind of famous or good player at something once they can;t do it can coach or teach it. are there any kids or maybe good well behaved teens maybe that hewould be able to coach them to fish or hunt, i say well behaved simply because hunting guns are used, and they won't go out and be stupid.
like i said it is just a thought don't know if he would even be willing, just thought i would put the idea out there.
trish

Thanks Trish for this suggestion but I don't think at this point he is or would be willing to do anything on this order. We have 4 grandchildren ages ranging from 4-11 and he does all he can do to tolerate them together. The family goes fishing when ever possible and sometimes like pulling teeth to get him motivated to go. He has to haul the 02 machine and he has to stop to rest after short distances of walking. We as his family are willing to deal with these obstacles but he is the one who makes us feel different. Thanks again.

I went through a similar period with my father and my husband during their lives with cancer. Sometimes as tough as it may be, you need to practice some tough love too. When my Dad got mean and nasty, I reminded him that I didn't like him that way and would not tolerate his rude behavior. I had to do the same with my husband a few times. I know when they are hurting physically, they take it out on others. But being sick and in pain, is no reason to cause the people they love to also be in pain. I also asked them both, "Is this how you want the family to remember you, bitter, angry and mean?" Maybe a little guilt can help. It helped me with my two fellas. Good luck. Keep strong.

Thank You Cindy P for your apply.

Hummingbird,
I know excatly what you are going through!! Except my husband had a cancerous cycst removed from his spine-walked for a year-then had 4 more surgeries -plus sathp infection that put him in a wheelchair. I am his only caretaker and it's really taken it's toll on me,too. He only wants to stay in bed about 20 hours a day-no TV -no company-used to love anything outdoors--had a bassboat,motorcycle,hunted.yard work-all of it -now I have to really make him MAD to go outside-I even had a big deck built and a path to his shop made -no help-he loves the grandkids -and-used to do anything and everything with and for them -now he hardly says much to them when they are here-last time I HAD to ask him to watch one of them play a game on the computer-that hurt!! The older ones remember him how he was and want him back-I've told him he can still throw them a ball-watch them ride their bikes-anything-he's not interested-he's hurting and needs to go to bed-I know he hurts-he never took a tylenoyl before this,but it hurts so bad to watch him give up and not try,I've begged.cried,cussed and tried everything -nothing helps and the grandkids hurt so much-one want Santa to bring him a DR.s kit so he could help Papaw get well. That did not fase him-I.ve begged him to go to the Christopher Reeves Foundation and I honestly think he'd get some movement back-he says NO--I am retired and stay at home and seems like all I do is sit here and listen for him to holler that he's ready to get up and eat-that's a task-he's over 200lbs and 6'1" and I'm only 5-2 and about 140 which I wish I could lose-but do not have the strenght to excerize after helping him in and out of bed at least 3 times a day-plus he does not want anyone else over here either-or for me to put him in bed before they come-which is very rare=they know how he feels-I feel lost in space and no where to go, I am on antidepressants-do you know of a group in that -they might help some,too. Just wanted you to know you are not alone-my husband is little a child pouting-if he has to get his own water!!!First words out of his mouth on most things is I can't!! Makes me so mad -I tell him theirs other worse off than him and do a hell of a lot more than he does-I just get upset with him -them myself,too. I live in the living room and him in the bedroom all day-then memories of my son depresses me more-the grandkids help me fell better when they come,but I hurt for them because they want Papaw to do something-anything with them!!! Seems like a no win situation and I go to a therapist once a week-just started back-could not handle anymore of it. I hope and pray you situation gets better-but if you ever need friend to just talk to feel free to contact me, Helen McWilliams
helendanpm@yahoo.com

Know just how you all feel! My husband stays in the bed which is in the living room now, just about all the time. He can't get up on his own, but I am more than willing to help him get up into his wheelchair. His response is usually "maybe tomorrow". When I can talk him into it he'll stay up maybe 20 min. I can't stand it! He had a physical therapist that came here for months & they worked really well together. He was walking with a walker 3 times a wk up to 200 ft each time with minimal help. He was able to walk down 6 steps & back up again with minimal assistance. He hasn't even tried walking or going up & down the stairs since Jan 31. That was the last physical therapy visit. They went as far as they could with him. He feels like he was abandoned - when it was Medicare guidelines that put an end to it. He's going to lose all that he's worked so hard for & just be a crippled man in his bed. He's only 54. I don't understand why he would do that to himself. I've tried everything I can think of to motivate him. Sweet talk, tough love, yelling. Why is it my job to make sure he does these things? I'm not his mother. He's not a child, although there are plenty of times I'd debate anyone on that! I don't even know at what point we changed into these roles. He can be so sweet & loving, then be the world's biggest ass all in the same day. It's terrible to say but good to know others go thru similar things. It's good to get this off my chest.

Sorry, but I just have to reply. My husband tried this staying in bed, feel sorry for me stuff and I just had it. I said if you want to lay in bed and play the pitty party he could do it by himself. He has severe chronic pain from a fall at work. Many bad discs and herniations in his back. Surgery was not an option in his case.

He was always active with his job, fishing, hunting and involved with our children. Now we have grandchildren. He is now involved with them. The pain is still there but the pitty party has lessened. He still has bad days and feels sorry for himself but I don't have to listen.

I just was not going to put up with it and he had to change. Don't get me wrong, I'd never leave him for nothing, he is my sole mate.

If a person finds that they can become somewhat independent again they will feel so much better about themselves. This may take a lot of coaxing on your part.

I know what it is to live with someone so negative about the future that it nearly drove me crazy. I decided that would not be an option so I pushed him for his independence.

He has thanked me so many times for making him get up and become independent again.

I sure hope I haven't stepped on anyones toes for I didn't mean to. I respect anyone that is a caregiver because there isn't much thanks given for all that we give.

Love to all dealing with this difficult situation and needing to vent for that is what I am doing.

Stay strong and take care of yourself.

Omie

maybe your husband needs a anti depressant, talk to your doctor. He's probably depressed. also a support group is great. My husband had IPF and no one understood this disease or him. God Bless.

My husband is only 27, and he has fibromyalgia, severe asthma, retinaltelenjectitus ( scars from aneurysms in the back of his right eye), severe allergies, his knees have a connective tissue problem I cant remember the name of it right now.. but yeah he got the crappy end of the genetic stick and the poor fellow is falling apart. He cant drive because of his eyesight also. He tried working at a call center a couple of years ago and he got someone's weird head cold and it seriously made him the sickest I have ever seen him. So now he has given up on working jobs because of these issues. I have tried to convince him to go to the state to get on Social Security but it has been a battle so now I just avoid the subject altogether. We had a kid but because we could not afford her on just my wages alone we had to give her up for adoption to his parents. I misunderstood him for 4 years and thought that he was just being irresponsible, but I have taken him to the doctor and he is way bad off. I don't think he is throwing a pity party because I can tell he does not feel good. I don't have very many friends left because of two things I have no car and some of his friends think he is faking it and a loser so unfortunately he is alone when I am at work and when I am asleep- he sleeps all day and stays awake at night. He usually plays World of Warcraft or texts the couple of friends that he does have left that live far away now. He has his own music pages on myspace and trying to start up other music spaces in other domains. I am going to school part time to get him some DJ equipment and hopefully he can DJ every once and a while starting this Spring. We go out on short walks to the mall near by, we used to walk far and to parks but not so much any more. I really miss some of the conversation and fun that we used to have, we have both grown grumpy on and off over the years and now we are both trying to stay happy and active. I got so tied up with work and school that he got emotionally neglected and needed some kind sanity and ended up having an emotional affair with one of his female friends, I am surprised our marriage has lasted that one... it can be really tough to stay positive but really if you can stay positive it makes the hugest difference. I have been focusing on things that make me happy too like violin and art just so that I am not abandoning myself. Time is very short resource for me but having a low key sit down job has helped alot.

Hi everyone....this is my first time here...it seems we all have similar stories. My husband is 64 and has had MS for many years. Being the caregiver is really wearying. Normally I am very upbeat, happy and optimistic, but lately have been feeling so low and depressed it is scaring me. Thank you for being there.