Does anyone have a spouse on disability?

[zippitydooda]

My husband was diagnosed with emphysema 8 years ago, and has been on disability for the last 6 of those years. He is home all the time and doesn't do much to help himself. He only goes to the doctor when his yearly medication prescription is about to run out, and is never completely truthful when he is there. I go along and set the record straight, but he is 61 years old, and I don't think I should have to do that.

I'm just curious how other people handle spouses who are "disabled". Or kids, or parents.... kind of looking for moral support I guess.

 

[turney31]

 

[chicksbestfriend]

My husband became disabled a little over a year ago, he has myelapathy, which is nerve damage to his spine and he is in chronic pain all the time, on a good day, its a 7. I have to accompany him to all his doctor appointments and tell them "what really going on" with him. Everytime he would go to the doctors, thats if I could convince him to go, he would down play his symptoms and then ended up totally frustrated when he got shot down for disability benefits. According to what he was telling the doctors, he is fine. Every month for the past 7 months he has cancelled out all of his doctor appointments. With the amount of damage to his spine, docs say he is a miracle to be walking, and we thank our blessings for that. We are currently in the appeals process for his benefits, he goes in for evaluation next week, like you, I hope he can be honest about whats going on. Along with the chronic pain, he has memory loss, confusion, lack of concentration and is clinical depression. He has a hard time keeping his balance, cannot walk for extended periods of time, cannot enjoy outside activities that we once use to engage in all the time, he neglects his personal care, has no interest in social activities. During the course of this past year, we have also discovered that his liver and kidneys are not functioning well. I know he doesnt like to go to the doctor for fear that they will find more things wrong with him so he drowns out his pain, fears and sorrow in drinking beer everyday. He is turning 50 this year, and all these medical issues has really taken a blow to his ego. His illness has threatened his ability to "protect" his family physically, it has made a huge dent in his earnings so he feels he is no longer the bread winner and financially able to support us, and has left him feeling helpless by not being able to do all things he use to do like home improvements, working on the yard and cars. I allow him, or should I say, I challenge him to do what he can for himself and by himself and I praise the efforts. I realized when I was feeling pity or sorrow for him, doing the simpliest of things he was able to do himself, I was hindering his progress, keeping him reliant on me and also raising my own level of frustrations. So one day, I put on some balls, and told him, "You can lay around the house all day and do absolutely nothing and be miserable and in pain, or you can get your a@@ off the couch and do something productive and feel good about yourself, and still feel the same amount of pain!" I was so thankful that he "got it"! He is up and about, doing the best that he can to make a difference! He often used his illness to avoid social settings and I would usually stay home with him and be miserable. Now, I tell him that I am going to do such and such and he is more than welcome to join me, and more times than not, he joins me. The more he sees that I am not going to allow his misery to hold me or drag me down, the more effort he puts forth in his own recovery. Our life has taken on a huge change in direction, alot of challenges for sure, but I wouldnt change where I am at today. Like the saying goes, "If it doesnt kill you, it can only make you stronger!"

 

[zippitydooda]

Thanks for the replies. My mother often asks me why I don't ___________(fill in the blank) to get my husband to..... (whatever). I get so tired of making excuses for why he doesn't go anywhere, do anything, or help himself. A few years ago it occurred to me that his illness is HIS illness, and no matter what I do (nag, cry, beg, yell, guilt, etc), he is only going to do what HE wants to do. I am overweight, and realized that he can't stop me from being fat, can't control what I eat or how much I exercise even though I KNOW I need to lose weight. No amount of (nag, cry, beg, yell, guilt, etc) him trying to change my behavior is gonna work. I have resigned myself to the fact that he isn't going to do much of anything. So.............. I get to watch him slowly smother and struggle to breathe. I don't have a "partner", I have a roommate. I know he feels less of a man, but I can't do anything to change him.

The reason I wrote is that I was wondering if I was alone in this experience. It feels like I'm alone. Nobody realizes that when the spouse is sick, BOTH people suffer. I was curious how other people dealt with their lot in life.

I appreciate the hugs AND the encouragement. Thanks bunches!

 

[kla37]

At least you care about him! That has to mean something, that you are both still together. I have Multiple Sclerosis, and worked for a long time, pushing myself and taking lots of medications just to get through the day, and I had to do everything myself. Work, the house, the kids and all their activites, the yard, just taking care of everything, and my husband turned out to be nothing but an abusive worthless jerk about all of it. He even tried to blame it on me. Now I'm happily divorced, and I use the energy and strength I do have for my kids. That's enough for me. I used to feel bad about thinking about going on disability, but I've decided that it's the best for me, and my family, who do so much for us already.

 

[QuinnP]

Ive been on disability for er, since I was 12. (cerebral palsy, fetal alcohol syndrome, fibromyalgia) Its hard. There are so many things I long to do. When I get to Eugene I', gonna apply at Goodwill for a job. I wanted to be a vet tech or a geneticist but it wont ever happen. Those who think we who are on disability are lazy, slobby with no work ethic are wrong. Its not easy watching from the sidelines.

cheers to your husband.

AND YOU! I DIDN'T FORGET YOU!!!

 

[zippitydooda]

It is helpful to hear from those who are also disabled. It is a perspective I don't get to see. My husband is pretty closed off about discussing his condition (depression maybe?). I understand the illness has changed everything. I guess it is hard for me to understand the attitude of: if it can't be the way it used to be, I don't want to do anything at all. Sure there are things he will never be able to do again... but there are LOADS of things he can and should still do. For a few years I was angry at him all of the time. Then I tried to put myself in HIS shoes... how would I feel if I was the one who was sick... how would I want to be treated. That helped a little bit, but I don't understand why he won't go to the doctor and get some help. He has the opportunity to maybe improve the quality of his life, and all I hear when I bring it up is "quit nagging me...". So, I don't say anything, and we just don't talk about it.

That's why I guess I posted this thread... just wanted someone to talk to. I know that nothing will change, but was hoping to hear what other people do in this situation.

Thanks for all the support and different perspectives!

 

[pookiegoldman]

Hang in there... I can say I know what you're talking about. My husband became disabled 3 years ago after screwing up his neck and lower back in an offshore accident. About 9months after his accident, all he wanted to do was sleep. He became addicted to his pain meds, and fentanyl patches. He was depressed, and a royal mess. He would NOT leave the house and would guilt me into staying with him if in case he needed help. He fell down numerous times, would fall asleep on the toilet. I'd walk in a few hours later and he'd be passed out there. He was big to begin with, but gained about 125 pounds, so I know what you mean when you said you'd watch him slowly smother and try to breathe.. Well, it took us splitting up for him to turn around. Today, he is a totally different person. He gets up. Stays most of the day going here or there, working in the yard, taking care of the animals. He's the one who's usually waiting on me to do something now. So, what I'm saying is don't give up hope.

 

[BigPeep]

I am actually on disability. I have fibromyalgia, chronic fatigue, asthma and multiple chemical sensitivities, and can no longer work in an office environment or in courtrooms. Ironically, I was also a disability lawyer. I established my farm partly to give me something to do and partly to make sure I knew what was in the food I was eating. I now work out of my house part time representing people all over the country with chemical sensitivities and other impairments on disability claims, where I do the hearings by telephone from my home based office. I spend as much time as possible, however, in the yard doing what I can and supervising interns and others who volunteer to help with the garden and farm. Last year we fed 50 families every week with a vegetable CSA where many of the members worked on the five acre farm. This year we started with chickens and have an egg CSA, but no vegetables except al la carte as the large vegetable CSA was too much work, I found. We also had a fire in the house and are having it rebuilt.

I am now trying to find ways to integrate animals in with the garden so I won't have to do as much work. I currently have 7 fainting goats, 16 ducks, 50 chickens, two geese, four rabbits and a dog. I am only growing a few tomatoes, peppers and eggplants for sale to our egg CSA members and anybody who stops by.

Next year I plan on adding meat chickens so I can get better coverage on the garden areas and do a rotation. I will add a chicken meat CSA to the egg offering and do a small garden with the vegetables. We are also growing strawberries and shiitake mushrooms.

The garden is probably the best therapy in the world for someone with a disability. It gets them out of the house doing something, and puts them back in touch with the natural world, plus improves their diet. As long as there is someone around to do whatever the spouse can't do, it can work.

I would encourage those of you with disabled spouses to try to get them interested as much as possible. Remember, "Give a man a tomato and you feed him for a day. Teach him to grow tomatoes and you get him out of the house."

 

[zippitydooda]

Quote:
Any suggestions as to how to get him interested? All he does is sit in front of the television, reads the daily newspaper & flips through car books. He never was much for the outdoors even when he was healthy.