Dealing/Coping with a disabled spouse

Shawnn - posted on 03/04/2011 ( 45 moms have responded )

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Ladies, I need your opinions/support: My husband of 21 years was injured at work 10 years ago. Within 5 years of his injury, he was no longer able to work outside of the home, and is now receiving gov't disability.



This in itself is not a problem. However, I am just wondering, is there anyone else out there in a similar situation? I sometimes have a hard time being supportive of him without letting him see my frustration at not being able to help him (as his life partner, I vowed to always be here, always take care of him,etc, and here is a situation where my hands are tied) I can't "make it better", so to speak. He's a fairly young man (45), and he's worked since he was 11 yrs old, so not being able to be the "breadwinner" is really getting to him.



Now the rest: He can't take many meds. He was a recovering drug addict when we met (he's been clean and sober for 22 years now!) so the chemicals that his body injested during that period have severely restricted what he can safely take now. He's on narcotic/opiod painkillers, which are working, but they are extremely dangerous, and we are constantly on the watch for an accidental od (it's a transdermal patch, so if he gets to warm, the meds release faster). He cannot take any antidepressants, as they affect him in the opposite way, or the sexual side effects are WAY too much to handle. He's been to counselling, and he basically stumps them all, because he does accept his situation, but it's hard to see him struggle while I can't help him.



How can I help myself to not feel inadequate? I don't feel like I'm taking care of him to my best ability. I have a full time job, and I try to make sure he's included as much as possible, but I still feel guilty if I want to have a couple of drinks with my co-workers, or go have lunch with them once in awhile.



I should mention that we participate in our local farmers market each summer. He sharpens knives, and does general tool/equipment repair. So, he does get out, just not often...



Any advice would be GREATLY appreciated!

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Tami - posted on 03/04/2011

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Hi Shawnn,
Your life sounds like mine. My husband is disabled too due to a work accident at 40. I also work full time, plus take care of a small farm, with chickens, horses, etc, and we sell produce from our garden. My husband is also on pain meds that effect him so he sleeps alot and can't be on his feet for over an hour without pain, or drive because of the meds. Good for your husband to be clean so long!!

I too feel like I wish there was more I could do to help him relieve the pain. We even went so far as to have the metal removed from is leg and hip to maybe allieviate the pain. (Didn't work)
I should buy stock in Aspercreme we use so much of it. Every night I spend time messaging his leg and back. It does help him and I feel like I am doing something to help. We bougtht a hot tub basically for medicinal purposes. Time together there helps us spend quality time together we enjoy and also helps him. (If you have insurance see if it will help cover the cost of one, if prescribed by a Dr.)

My husband was very depressed since he felt he was no longer contributing money (while waiting for govt disability to go through) and was having anger issues because he felt helpless and a drain on finances. Constant reassurance that the finances were Ok and he contributed other ways was madatory to keep him from eating a bullet( His words) I'm sure by now you know what your spouse can do during the day without over doing it. Make a list of non pressure things for him to do, even if it's as simple as changing a light bulb. He will feel needed and useful. If the list doesn't get done, relax. Another day.

Ask yourself, If your husband was not disabled, would you feel guilty going out with co-workers for a drink or supper? His disablility shouldn't change how you would behave if it had not have happened. You also need time for your needs. It is not selfish to take care of your needs too. If you take care of yourself you will be much better prepared to help him, both mentally and physically. Think of yourself as a cup. If you always pour out and don't refill, eventually you will be empty, and that helps no one. (My therapist told me that when I saw her after my husbands surgery and I didn't refill)

Does your husband like visitors? We try at least one time a month to have friends or family out for dinner or company. My husband can't go any where for very long so we bring the party to him. If he needs to lay down, he can, and I still get my time with friends. Friends and family understand he needs to lay down. He gets to socialize too, and hear whats going on, from other than me. Have a BBQ. It's a man thing.
He controls something and is the provider in front of friends and family.

Sorry for the long reply. Hope it helps and good luck. If you want to talk more, hit me up in a personal message.

Shawnn - posted on 03/18/2011

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Morning, Ladies! I, for one, am glad it's Friday! Hubby has had a great week (his mom came by last weekend, and I took some time off)! If the "winter weather" will just hold off, we may actually get some outdoor time this weekend!

I hope everyone has a GREAT day, and weekend!

I just want to let you all know how nice it is to be able to come here and jot a few lines, whether it's venting, or appreciation.

So, thank you, ladies! You are all wonderful!

Shawnn

Sharon - posted on 03/17/2011

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Tami - have your husband ask his doctor if a drug called Nucynta might work for him. It is fairly new to the market and you aren't supposed to develop a tolerance to it. That is what my husband takes now, but it doesn't work 100% and he uses other meds too, but it has really helped him alot.

FMLA is wonderful! Granted it is without pay, but it allows you to save your vacation time for actual vacation/mental health days.

I will try to add more a little later, have to go put the toddler to bed right now and do some laundry, dishes, etc...

(((hugs))) to all!

sharon

Shawnn - posted on 03/17/2011

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Oh, definitely check into FMLA! That's what they are there for, and a good HR manager will have all the details.

Tami, tell your hubby to hang in there. We did the med gamut, started with low grade, and worked our way through almost everything. Fentanyl is what he's on now, and (fingers crossed, knocking on wood, and PRAYING) that he doesn't start developing a reaction to that.

One thing I've found is that a good pain management doc will work wonders. So, for Sharon especially, see if there is a good clinic that your doc can recommend. We visited, oh, probably a good 10-15 clinics between Laramie, Cheyenne, Casper, and northern Colorado, and (although extremely frustrating at the time, everyone says "we don't feel comfortable handling that level of narcotic medication") we are finally in an excellent place. I can call anytime for info, etc, and they are friendly, understanding and helpful.

And, isn't it fun when we get to learn how to do all of the sports? LOL...coming from an extremely uncoordinated woman who wasn't athletic in school...I've learned how to play soccer, football, and wrestle all in the last 7 years, since my youngest got into sports. I'm a darned good block, too.

Tami, we just may have to try to get together. Rich isn't much for long travel, but I'm sure I could sweeten the pot with a museum that he wants to go to. (can't remember the name now, but has something to do with cars, or planes, or something...LOL)

I'm about ready to sign off for the day, but my prayers, love and respect go out to all of you ladies!

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Lilian - posted on 08/30/2012

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Hi gal, hold in there am a lady who is disabled father of my child left me after my accident but now I got married to another guy, he is really nice to me. He cannot even left me alone in the house because he feels something for me and he gave my child that opportunity of having a father even though he is a step-father as you are a lady please join him dont let your husband down please

Annette - posted on 04/10/2011

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my dad had 2000 lbs of steel fall on him when i was 16 years old. he was a very active man before his accident. some of the things he had to do was re learn things that he liked. my mom and him loved going to las vegas he would walk around (with a cane) or later with his wheel chair thingy and mom would play bingo. every year my brother would take them to disney.. i found it a wierd place for grownups to have fun.. but, they loved going with their grand kids. my dad was diagnosed with brain cancer dec 25 of 09. in nov of 10 we got to wach my dad pass away at 59 years old. He is/was a fighter until the end. You just being there for him probably means more then anything else in the world. find new passions..and what ever you do let him know your frusterated.. let him know you are trying your best but feel helpless... and let him no that no matter what . you love him and are glad that he chooses to share his life with you.

Shawnn - posted on 04/07/2011

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Well, since I started this...I can, as long as it's not too hard...LOL...over 40...technology...LOL

Tami - posted on 04/07/2011

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Here is a link for a new forum for everyone.

I had another site for step grandmas and step mom and just changed it over. Who wants to be a moderator?



Shawnn - posted on 04/06/2011

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well, if it's not too hard to set one up, Tami, that would be a good idea, I think :)

Anyone else have an opinion?

Tami - posted on 04/05/2011

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Do you ladies want to make a new forum with this title and not respond to this thread every time? Opinions please!!!!
I can set one up with invites to everyone here in about 5 minutes

Tami - posted on 04/05/2011

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Hi Sheila, Welcome!
It is really helpful to get the view from my spouses side. Men will never talk about anything unless it is pulled out of them.
Glad to hear you had a good weekend Shawnn. Now just drive over here and start work on my yard. JK LOL:)
The weekend was a good one. Hope you all have a good week.
Have to work late Friday and early Saturday so I can't get the SS Friday night and hubby can't drive to get him. We tried to switch weekend visits but BM is no help there so we may have to go 3 weekends without the boy, which just tears my husband up. Asked the teenage daughters for help in the yard this afternoon and 1 had the nerve to say since they got out of school early today she was hoping to do NOTHING this afternoon. I was stunned and just walked away out to do yard work by myself. I forgot I did promise my other daughter she could go hang with a friend but I was disappointed she didn't stay and help. Any.. way got lots done by myself. Hubby broke open the grill and made some delicious steaks for supper.
Tomorow is another day.

Shawnn - posted on 04/05/2011

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Sheila,

Thank you so much for your insight! Sometimes I wish I could look into my husband's head! :) Welcome to the circle!

I will say it was a good weekend! Other than being extremely tired when we got home, anyway...Went to his mom's, and did some yardwork, etc for her. It was light enough work that he could do a lot of it, which always helps, and she's always got a lot of little projects that he can help with. Wonderful weather on Saturday, too, which really was nice. Of course, driving back into snow on Sunday didn't help, but we just keep telling ourselves that spring is on the way...

Sharon, the bouncy house that blew over in Texas on SAturday wasn't yours, I hope! I heard that, and I cringed, thinking about your little one's party!

Have a great week, ladies!

Sheila - posted on 04/04/2011

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Hi Shawwn,

First of all let me say that I think it was great of you to reach out and talk about the issue's with your husband's disability. My heart goes out to you, it takes a strong person to cope day in and day out with a person who can no longer work due to a disability.
You see I too am 45 years old and I have been disabled for five years now. I have a bad back injury and had gone through what I call pill mill doctors until I found a really good pain management doctor that finally listened to me. I am also on powerful medication, lethal dose and my doctor would say. Ugh do I like taking the medication NO, but if I didn't I wouldn't be able to at least enjoy somethings in my life, kids, grandbabies, husband. I have had three stimulator implants and no help with my pain and no surgery will fix the injury that was something I didn't want to hear. I hate the fact that I have to sit here day in and day out doing the same ole stuff after 5 years of it, it can become quiet depressing at times for me. I feel horrible that I can't work anymore and that my husband has to continue working when he should be retiring. Everyday he leaves for work it just eats at me. The fact that I can't do certain yard work anymore, I can't clean my house without causing a great deal of pain but I do manage to keep it fairly neat even though I will dearly pay for it later. I told myself no way in he@@ will my husband work and then have to come home and clean too. Here it has been 5 long years and I still haven't come to terms with this, not sure quiet how too. When you have limited funds not really a whole lot to do. I have my internet, cell phone, cable and my sister retaught me how to crochet so I have been doing that as well, but its still at times doesn't seem to be enough to occupy my time. And the guilt OMG of not working so that my husband can enjoy his retirement years is unreal. I keep asking him "am I becoming a burden to you" he constantly assures me I am not that he loves me and he married me for better or worse and he ain't going anywhere. I got lucky when I found him..:) Couldn't ask for a better man. He treats me like a Queen and takes such good care of me even when he is exhausted and I am having a not so good day due to my pain level. That too is something having to see if I am going to be ok for the day and make some kinda of plans to do something then when I do bam! Here comes the pain. I know I will always been in pain for the docs cant ease all of it but most of it which is good. I hate that I can't enjoy my grandbabies like I would love too. But I am blessed to have them. I dont really complain alot about the pain for I am not a whinner, just when I have my bad days. My husband and girls can normally tell when I am not having a good day. They all have their lives to live as well and will not be a burden to them. I just throw my hands up sometimes. Just wanted to let you in on some of what I deal with being the disabled person..What a great wife you are for standing by your husband's side, it takes a strong person to deal with all that you have too. And yes you time with your friends as well. Your not leaving him at home in a sense you have to live too, and I know you feel bad about doing those things but its good to get out once in a while and not have to deal with any of it. I wish you and your husband the best. I get on here about every other day if you ever need to talk. Take care
Sheila

Sharon - posted on 04/01/2011

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I have been slowly working on cleaning the house the last few days, and my teenager will be there tonight to help me some. I really just need to pick up the toddler's toys, clean the hall bathroom, and vacuum/mop (which will wait until tomorrow). Tonight I am also going to take time out to play in the bounce house (it was just delivered!) and enjoy life a bit.

Tami - posted on 04/01/2011

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Birthday parties are soo fun. My girls are too big (they think)now but the grandkids and 11 year old SS always get a cake at our house. My hubby always over does it on a party day because he is having a good time. Sometimes I have to put my foot down and tell him to SIT for a few. Bout that time he realizes I am not just nagging but knows I can read his fatique signs. If your hubby has to take a break from the party everyone will understand and he doesn't need to feel embarrassed about it.
As for cleaning the house, do the minimum because you know it will need the full sweep after the party. Maybe you can recruit some help after the party too. It's supposed to be near 60 here this weekend and the garden is calling for prep work, but that kind of work is sooo much better than work work. Have a great weekend Domestic Divas of their Domains!

Shawnn - posted on 04/01/2011

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Oh how fun! I miss my guys being little...LOL...birthdays now consist of "I'm going out with the guys"...Although we do have family time and cake.

Have a great time! I'm sure your hubby will be fine, for some reason, mine does really well when we have something like that going on. I think it's because he feels more included :) Anyway, have a great weekend!

Sharon - posted on 04/01/2011

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I know what you mean about cabin fever Shawnn!! :-) We keep getting small tastes of warm weather, only to get hit with snow or sleet a day or two later.

This weekend we are having a birthday party for my toddler, he will be 3 on Monday. I hope my husband can make it through Saturday with people over without wearing himself down too much. Tonight is going to be a crazy night for me...the bounce house for the party is being delivered today...I have to finish my son's birthday cake...get spaghetti sauce made for lunch tomorrow...finish cleaning my house...and my dad is coming in town sometime today.

Shawnn - posted on 04/01/2011

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Well, ladies, it's been a week! I will be very glad when spring really does arrive here, so that my hubby can get out more...he's starting to get cabin fever and it's rubbing off...hopefully this weekend will be better, we're going to see his mom for a few days!

I hope everyone else's week has been good! It's nice to know that you are all here and ready to be a good shoulder!

Thanks, ladies, and bless you all!

Tami - posted on 03/28/2011

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Welcome Michelle!
You really have a plate full and I wish you all the best.
Both you and your hubby may be qualified for disability. If not full then maybe partial disability. Sign up as soon as possible. The disability pays back to when you first applied so a chunk of change is usually your 1st check. The SS department told us they automatically deny the 1st time so keep trying. We got a lawyer to speed it up. Cost us 5K but it comes out of the back pay check so no money up front. Like the other ladies said check into housing assistance and don't forget food banks. They are there to help you through the rough times.
If your Dr. doesn't get on the ball, shop around. Usually the pain management Drs can qualify you as disabled and also help you get that ball rolling too.
Ask you regular MD if he can refer your middle girl to a child psycologist. I had 1 daughter who needed to go a few times for anger issues when she was 12. She needed someone to talk to who wasn't mom. (issues with bio dad)
I wish you all the best and write whenever you feel the need. You welcome to talk here.

Shawnn - posted on 03/28/2011

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Morning, ladies!

Michelle, welcome to the group, and big hugs to you!

I'd definitely check out the housing assistance (if you haven't already), as well as SS disability, and any medical assistance you can. Another thing, for your hubby, see if you can have your doctor refer him to a pain management clinic. They generally have more methods of pain management (ours is a God-send!), and different meds he can try. We've run the gamut from regular meds like Darvocet/vicodin, through morphine, and now fentanyl. Each has it's own little quirks, but finally the fentanyl is working!

Most importantly, you still need time for YOU! That's my hardest struggle. I want to be there for my family, and be strong, etc. Well, I can't do that without a strong mental base, so I have to remember to take time for me.

That's just a basic hit on the highlights. Please let us know if there's anything we can do!

Sharon - posted on 03/28/2011

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(((hugs))) to you Michelle.

Can you guys qualify for housing assistance? With everything you guys have going on there almost has to be some sort of help for you. :-( It breaks my heart to read what all you have going on.

Michelle - posted on 03/28/2011

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Hi my name is michelle i live in pennsylvania and actually just logged on here to find others like me my husband all his life worked in construction he basically deteroated his body now with rhematoid arthritis, gout, bulging disc nothing has worked for him and he has gotten use to the pain meds they just dont work anymore he gets really moody at times I also have a prolapsed heart valve and can only work part time which is just not enough to live he is working on disability finally his unemployment ran out he really just got really bad last summer has lost all his strength in his hands walks with canes its horrible I feel lost sometimes we rent a place and its hard struggling I have three kids they do help but recently my youngest we just found out she has a heart problem also an abnormal electrical wave in her heart she is on meds now to and my middle child well she has anger problems which is really upsetting us all I dont know what to do with her anymore I dont like giving up but she is not controllable anymore my oldest well she helps but she is in a bad relationship and its hard to tell her she would be happier with out cause she is in love.
I just dont know anymore about anything right now I only wish things can get better but the doctors keep dragging there leg.

Sharon - posted on 03/27/2011

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I took a "weekend away" from my husband and toddler and went to cheer on my teenager and the rest of the drumline squad from his high school. They had their final competition of the year about 210 miles away from home. :-) I rode down in our semi-truck and bunked with a few other moms so it was a cheap weekend for me. I got a bit stressed when I called to talk to hubby and he said he raised his prednisone because he was hurting so much. He was home alone (my toddler was with my mom) so I was concerned for him. He did ok though, luckily.



My trip to watch my teenager was extended by a day due to snow here as well and needing to make sure we had safe conditions to get the kids all back home safely. :-) Unfortunately I messed my left knee up while helping with the equipment during the trip, hoping nothing major as I do NOT want another knee surgery :-*(

Tami - posted on 03/26/2011

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How are your weekends going ladies? It snowed here and we have the son and 2 grandkids this weekend.Hard for him to get a nap when there is so much noise. I think the grown kids sometimes forget their dad can't do what he used to do and needs to lay down during the day. I kept them somewhat busy making waffles and chocolate chip pancakes and teaching them how to play hide the thimble. I must be old because they had never heard of that game and didn't know what a thimble was. LOL

Shawnn - posted on 03/21/2011

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All wonderful accomplishments! I'm glad to hear your weekend was good, hope everyone else's was the same!

My brother came and got the boys on Saturday, so we had all day and night without kids! Was nice enough that we could get out of the house (as long as I had enough rocks in my pockets to stay on the ground), so the yard looks better, and we both feel much better for the time outdoors!

Here's to a wonderful week, ladies! Everyone enjoy!

Sharon - posted on 03/21/2011

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HAPPY MONDAY!!!!!!!!!! :-)

I hope everyone is had a wonderful weekend and a good Monday. :-) For once I can say my weekend was excellent. Friday night with the girls, Saturday watching my son's drumline competition, and yesterday my husband went with me to watch my teenager's Ultimate Frisbee game and we went to lunch afterwards. Plus, while we were out my mom came to my house and did a little cleaning for me AND my toddler finally pooped in his potty. LOL.

Sorry, had to share some of my happiness with others. Please don't hate me :-)

Sharon

Sharon - posted on 03/19/2011

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I had a wonderful time last night - didn't go out with hubby, he wasn't feeling up to doing anything, so I went to Girl's Night after doing some retail therapy. LOL. Some shopping and a few glasses of wine equals a fun night.

Today I went and watched my teenager's drumline competition, they did quite well. Tomorrow is an Ultimate Frisbee game that my hubby plans on going to watch (our teenager again). Actually my hubby doesn't know it but I will stay on him to go since he NEEDS to get out of the house.

Hope everyone is having a good weekend!

Tami - posted on 03/18/2011

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Thanks for the tip on the new drugs Ladies. He has an appointment Monday and we can ask about them.

Tami - posted on 03/18/2011

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TGIF! Hope you all had a good day. Hubby got a lot of work done on the chicken processing barn we're building. Had to do the aspercreme rub when I got home, but a good day for everyone! Weather has been so great we all, even the kids, were out doing chores late this afternoon. Tomorrow he has help coming to help him so that will be great, it's an old friend he hasn't seen in years so they will have lots to talk about. Friends asked us to go out to Kareoke tonite but hubby said he just couldn't walk any more today. OK by me as work was hell today.
Ladies, I Hope you all have a fun weekend! Enjoy the weather and family!

Shawnn - posted on 03/18/2011

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Well, either way, I hope you enjoy yourself tonight! Our son asked if we were still planning on going to "Paul"...LOL...neither of us realized we were supposed to be planning on that...but I think we'll take the boys to dinner tonight. Been a nice weather week, and it's their spring break, so we ought to do something fun...LOL>..I don't think that they consider chores fun

Sharon - posted on 03/18/2011

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Not bad. Waiting to hear from my hubby on how he is doing today. If he is up for it we are going to dinner or a movie tonight, but if he isn't up for it then I have a purse party to go to. I am not a "purse person" but I am all for some time out with the girls! Especially since my MIL asked if my little guy could spend the night with them and she will get him from the sitter's house.

Had a good night laying with my hubby watching tv and going over the questions I have come up with for a trivia night I am coordinating (to raise money for the Vasculitis Foundation).

I am so thrilled it is Friday! Only 4 more hours and I get to leave the office!!!!

Shawnn - posted on 03/18/2011

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Marcie, may your day get better, hubby feel better, and your crochet class be extremely fun and relaxing :)

Marcie - posted on 03/18/2011

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Thank you so much! You ladies are awesome! I have needed something like this for so long now! Just to be able to talk to other ladies who "get" me! lol



Hubby is having a bad day, but thankfully, no trip to the ER! So far so good!



I am really looking forward to this weekend! I'm taking a crochet class tomorrow!! YAY!!!



Anyway ... hope you all have a good weekend!

Tami - posted on 03/17/2011

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Welcome Sharon! I have twin 18 year old girls graduating this year and and 11 year old SS we get every other weekend , along with the a 8 year old grandson (step) almost every other weekend. The girls help me so much and I will really miss their animal chore help when they go to college. It really helps that they can drive themselves to alot of school functions, but I miss some too. They have been very understanding for their age. It's hard on the 11 year old because Dad can't do stuff he likes to do. so I practice baseball with him and shoot basket ball. The grandson and him are so close in age they really play well together, which takes some of the stress off Dad (papa) to do stuff with them, but the guilt is still there because he can't do stuff they want to do all the time.

Pain management. Having to sign a paper saying you won't sell the drugs on the street. very degrading and it makes my husband so mad he has to sign it. He doesn't get enough the way it is to last a month and shorts himself on good days so he has some extras for the bad days. Trying to find a Dr. who will even prescribe something that actually works for the pain is tough. Third Dr finally believed he was in pain and needed a script, that he was not a junkie. What I hate is everything has tylenol in it and they have to check his liver every 3 months to make sure the tylenol isn't killing that! What a racket the drug companies have. My husband switches between hydrocodone and oxycodone every few months so he doesn't get "immune" to the pain killing part of the drug so fast. Seems to be working. He's allergic to morphine so that is out as a prescription.

Shawnn, I live north of Lincoln about an hour out in the country. I love Wyoming and I am glad you found a Dr, that you can work with. That is half the battle in making hubbies life a little easier.

Sharon, too bad there isn't a Dr closer for you. Can your Dr. recommend someone closer for routine visits?I realize some illnesses do not have specialist every where and I'm sorry if there isn't one closer.

Marcie, I hope the Govt is helping your husband and backing him up with disability or medical help. Depending on where you work there are laws that allow for family medical leave without fear of losing your job for taking off for family Dr. visits. I know it's stressful worrying about your job and then worrying about the husband too. Please check with your HR department at work and see if they can help you with time off. Some places also have leave sharing for those with extra to donate to those who need more.
Sharon, my husband isn't supposed to drive either, but Monday I had Dr. Appt and he had 1 about the same time, (Dr.s 1 hour drive aprt)) and said he knew the way he had been there so often. Against my better judgement I let him drive. Well... he got lost on the way and had to call for directions. Thank goodness I know the way by heart and knew which wrong turn he took, got him turned around, and got thim there 5 minutes late.
( My vent for the day :)
Come on Spring!!

Shawnn - posted on 03/17/2011

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Sharon,

Welcome to the club! We'll have to come up with a name for ourselves :-) It sounds like your plate is as full as the rest of ours here! I'm not sure which would be tougher, having a disability suddenly thrust upon you, or having the knowledge as you get older that you will deteriorate on a daily basis. I think it's difficult either way (especially when it's men), but I have to say, knowing that you will never have a chance to heal from a long term illness would really take a toll.

We're in Wyoming, with the doctors being in northern Colorado. We couldn't find anyone here in Wyoming willing to handle the long term pain management, but that ended up being a blessing, because the clinic we're at now is spectacular.

Tami, I think it would be fun to try to get together. Where in Nebraska are you? We're in Laramie, so fairly close...LOL...as long as you aren't in Lincoln or something :)

You know, I"ve been thinking, if we could just market that "reserve" that we seem to be able to tap...we'd be millionaires!

Here's to a good day for all, no med reactions, no bad pain, and hopefully spring will soon be upon us!

Sharon - posted on 03/16/2011

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Can I join in this little group?? My husband isn't disabled from an injury, but a long-term illness with no cure. He is 37 and is going on long-term disability which is hard since he has been the one making the money for our house, I went to work to have some spending money when we traveled and to have cheaper insurance for our son and I, but now working is a necessity for us.

My husband used to go skiing, scuba diving, travel, hang out with friends, all that type of stuff, and now he can barely get out of bed. On a "good" day we will go to WalMart, but he is exhausted by the time we get home.

I have a teenager from a previous marriage and my husband and I have a toddler (he will be 3 next month). Between taking care of our little guy, being active in my teenager's life (going to games, competitions, etc), working full time, managing our rental properties we have, and getting my husband to any appointment he needs to go to (can't drive due to illness and meds, plus his specialist is in Ohio and we live in Missouri)...I don't know how I do it sometimes. I love my husband but sometimes I just get so frustrated with his limitations, but I am not mad at him.

And Marcie...thank you to you and your husband for serving our country!!! I am truly sorry you are both suffering as a result.

Tami - posted on 03/16/2011

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Hey Ladies, Where do you all Live? (I live in Nebraska.) Maybe we can get the hubbies together to chat and hang out and we can go to the casino for a break. :) Wouldn't it be great if they could collectivley make someting to sell at a farmers market. Thanks to your husband for his service Marcie!
Heres' to keeping the current "model" and keeping it all together!

Shawnn - posted on 03/16/2011

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Marcie,

First, please let me extend my thanks to both your husband for his service, and to you for your support!

Isn't it amazing how much good it does us to vent?

I've been reading the "caring for the caregiver" info as well. And, deep down, I KNOW I need to get away. But, that doesn't help in my day to day life, when I feel I should be doing more for him.

Lately its been a little better, simply because the weather is improving, and he can get outside more.

I am fortunate in my job. By the time I needed to start taking more time off, I'd accrued enough vacation and sick leave to last me for awhile. I had to use up quite a bit this last summer to take care of a sudden kidney illness that my son came down with, but I'm still sitting good on the time available. It's nice that my boss will work out flex time, and I can do quite a bit from home anymore, with the internet.

I think it would be nice if I could get him together with other men in his similar situation. (it would take a couple of YEARS to convince him to do something like that, but... :) ) If he could visit and vent with other men, and see that they are surviving having their wives be the income for the house, and still surviving the "humiliation"...maybe he'd realize I'm not in any mood to trade him in for a "better model"...

At least this week's been good so far, and we take it one day at a time :)

Marcie - posted on 03/15/2011

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Hi Shawnn,

I also can totally relate to everything you have written!

My husband's disabilities have come over a period of time. It's been hard to stand by and watch. One minute you have a very fit 35 yr old husband that can beat the 18 yr olds at their PT tests, the next minute you have an old man that walks with a walker for a husband. My husband has PTSD and TBI (post traumatic stress disorder and traumatic brain injury) from his time in Iraq.

Like your husband, my husband cleans house and cooks for the most part. But then it seems like whenever I have a bad day and just want to go home and relax, he's having a bad day and is having one of his migraines (which can last days and end up with a hospital stay).

I also feel like I am not giving it my all in helping him! I work and I'm almost out of days off! He can get rides to his Dr.'s appt.'s, but it always seems like there are "important" ones that I need to be at! On top of it, trying to raise two teenage daughters is stressful!

I’ve been reading a lot of pamphlets on “Caring for the Caregiver”. It’s hard to take the time out that we need. But I think, at some point, this is something we have to do! Step back, take a breather, and then have the strength to make it through the next round! I also feel like I can’t vent to him because then he will not tell me everything that is going on, because he doesn’t want me to stress! This just causes more stress!! Your Mother-in-law sounds awesome! It sounds like she is giving you the time you need to get away! There is nothing wrong with venting to friends and family whom you feel are reliable and can keep things confidential!

Feel free to vent anytime if you like :)

Shawnn - posted on 03/04/2011

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Hey, Tami,

Thanks for the response.

He does do most of the housework, won't let me help, except laundry, which is my "chore" LOL. Otherwise, it's all him! Plus he's the cook, always has been, and he enjoys that. We do frequent BBQs, etc, even in Wyoming, we're out in the middle of december at the grill.

I am extremely thankful that we found a doc to get him off of morphine, which really messed with his head and sleep schedule...gotta LOVE those med reactions, keeps you on your toes!

I think HIS main thing is that it's ok for a woman to stay at home and justify that by saying "mom is a full time job", but it's NOT ok for a man...which is stupid, in my opinion. No matter HOW much I tell him I need him, regardless of his disability, he always replies "you can have any man you want..." He JUST DOESN't GET IT! Like our marriage vows became invalid when he was injured. He does worry about finances, but deep down he knows we're doing well and living well within our budget. We've been able to provide awesome opportunities for the kids (oldest went to Germany last summer, etc). The market that we do is for "his" money. I don't ask that he contribute that to the household funds, he can spend it on his hobbies. If he has a slow week, but still needs something, I'll buy it, and then he'll spend the rest of the summer trying to convince me to let him "pay me back". Sometimes I do, most of the time I tell him that he can take me out to dinner.

I think part of the reason I feel bad when I want to go out is that we used to go out together a lot more, hang out with friends, etc, but since his injury he's pretty much limited that for himself. He can't drink, because of the meds, so he's my DD. I invite him in, but you know how hard it is to sit and watch everyone else drink? Once in awhile I can talk him into shooting some pool with me. The other end of that stick is that the meds make him paranoid, so he thinks I'm maybe looking for something on the side. He KNOWS better, but sometimes the opiods get to him. So, I've gotten him a cell phone, set up an internet account for him, with capability to chat with me when i'm at work, and make sure I text him frequently too.

Actually, I think my main need is to vent. His mom is awesome for coming over frequently, and when she sees me getting stressed, she tells him and the boys that she and I are going "adventuring". We disappear for a day or so, do our own thing, and just relax. It's been much easier since she moved closer, because we really like having her around. I just don't want to vent to him, because then he will get stressed about how much he is stressing me out, and that makes it worse.

Anyway, I do appreciate your post, and will probably PM you quite a bit! :) Just to make sure I'm staying sane, if nothing else!

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