Quadriplegic & Paraplegic Spinal Cord Injuries: Im So Lost - Quadriplegic & Paraplegic Spinal Cord Injuries

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#1 User is offline   momaof2 

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Posted 20 May 2009 - 05:14 AM

:) I really dont know what i am going to do.. i am 25 with two kids ages 5 and 1. my husband is currently still in the hospital. he was just moved from ICU yest. into a reg. room with a sitter. I was able to take our son to see him today, he burst into tears as soon as he saw our son. he thought he had lost him for some reason even tho there are pics and drawings we have been doing together for his walls in his room. he has now been in the hospital 31 days and i am new to this. he wants me to take him home and i cant of course..im so scared and i dont know what we are going to do for money. he is in a hospital an hr and a half away from our home.. i drive there everyday when i am able. weve been together 11yrs. and i cant even explain how i feel rite now for me and my kids and him..he is only 28, and was a construction worker, very independent..................i want to take our daughter tomorrow, but doubt i will have the money to do so..it is so frustrating, i just dont understand...why this had to happen. we have both had very tough lives, and now this. i wanna b strong but how do i not just give up? i wont give up thats a definite! im just so confused and lost and my soul supporter through all of my life's tragedies is now needing me....i dont know what to do or where to start...........
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#2 User is offline   CollegeGirl 

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Posted 20 May 2009 - 05:49 AM

First of all, let me just say that I am so sorry for what has happened. No one deserves to go through this or feel the way you or anyone else in your family is feeling. It will take time for you to adjust to things, but it will happen. Stay strong, you will get through this.

As for money, people can truly be amazing when they want to be. Ask your town for help. One thing my boyfriend's town did was create an anual softball tournament with entry fees, concessions and a small amount that fans had to pay to get in. All profits went to Chris. There were also straight donations that people could make at the games. Believe me, people actually do have hearts and want to help out neighbors in need. I'm sure there are a lot of helpful sites out there that can give you ideas for fundraising. Anything from setting jars in public places with a note explaining your situation to having the kids put on a public talent show for the neighborhood. Little things like this are very low cost, if they cost anything at all, and would get the community together to help out. People will stand beside you, even if they don't even know you.

You're going through a though part in your life right now, but don't let this break you. Refusing to give up will make you such a stronger person. Life can't knock you down, it can only push you in a different direction. Hold on to the love you have for your husband, kids and family and let that be the strength that gets you through today and into tomorrow.
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#3 User is offline   qbounce 

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Posted 20 May 2009 - 04:14 PM

There are disability state and federal subsidies out there that can help support you. Ask your hospital's discharge coordinator for info regarding these financial help aids. The coordinator also makes sure you will have EVERYTHING in order, from outpatient therapy (when the time comes) to caregiver help as well. While he's in the hospital use their resources to get ALL the info you need.

My heart goes out to you and your family.
When we remember we are all mad, the mysteries disappear and life stands explained. - Mark Twain
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#4 User is offline   sam4012 

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Posted 20 May 2009 - 09:19 PM

I'm sorry to hear what has happened. First, talk to the staff or team that is taking care of your husband before he is discharged from hospital. They should talk to him about disability information and what paperwork needs to be completed before he leaves the hospital b/c most of the paperwork must be filled out by the attending doctors and it's so much easier to do it while he's in the hospital before they discharge him. What type of physical therapy are they going to do? What type of physical therapy after he's discharged if your insurance will cover? We have Blue Cross Blue Shield of Calif and they cover 50 visits a year which isn't much. I know it can be overwhelming, but hang in there things will start to work out. I'm now my daughter's paid attendant/caregiver and you need to check into this to keep getting a paycheck since you may not be able to work fulltime. It was a big loss for our family when I could no longer work fulltime b/c I was paying for college tuition for myself and helping with paying for are other two kids that were in college. Thank god my husband's company has pretty good medical insurance. You might want to check out with your company's policy on Death and Dismemberment policy benefits when someone in the family is disabled, but first Social Security has to classify your husband disabled before all of this happens. Then the state you live in will give you info on what services they can provide for you, such as an attendant for your husband when he's at home, someone to help out with managing his bowel/bladder program, bathing, etc. . Also checkout the forum at Care Cure alot of good info out there about spinal cord injury and recovery sci.rutgers.edu. Do you have any family that are close enough to help babysit? Make sure your husband gets the right bed equipment, wheelchair, shower chair or whatever else he needs at home. We put in a lift system for our daughter in her bedroom. Helps out getting her out of the bed and into her chair, or bath and keeps me from injury myself.
Sam's Mom Joyce
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#5 User is offline   kdenon01 

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Posted 20 May 2009 - 09:30 PM

I am so so sorry about your husband. :)

I just want you to know that there are many people on here who have gone through what you are going through. And we made it! Try to keep positive and the hard parts will be over before you know it!
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#6 User is offline   snowqueeneh 

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Posted 20 May 2009 - 09:41 PM

My husband is 5 months post and will be discharged in 3 more weeks. He has a C5/C6 injury which means he cannot move his hands. He was a drywall taper so I understand the "construction" part of your story all too well. Paul will never work again... and working was his passion. My story is so much like yours it's unreal! We have two kids... I am 30 and Paul just turned 32. Paul always begs me to get him home. Still does. It can be so hard. PM me if you want to chat or vent (whatever you're feeling). We are somehow getting through this and so will you.
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#7 User is offline   momaof2 

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Post icon  Posted 21 May 2009 - 01:09 AM

View Postsnowqueeneh, on May 20 2009, 05:41 PM, said:

My husband is 5 months post and will be discharged in 3 more weeks.  He has a C5/C6 injury which means he cannot move his hands.  He was a drywall taper so I understand the "construction" part of your story all too well.  Paul will never work again... and working was his passion.  My story is so much like yours it's unreal!  We have two kids... I am 30 and Paul just turned 32.  Paul always begs me to get him home.  Still does.  It can be so hard.  PM me if you want to chat or vent (whatever you're feeling).  We are somehow getting through this and so will you.
thanx for the support..i have started his disability and his medicaid is pending..its just the waiting part...actually just got off the phone with him. he heard our daughter crying and he started crying saying how much he misses her..i put the phone to her ear and she calmed right down at the sound of his voice...He wants me to bring both of them tomorrow so i will some way somehow...i WILL get the money...it is so hard to understand why something like this happens to such good of a person..all he ever wanted was to be a good husband and father. and he is the best i could ever ask for..neither one of us has had it easy..he had a rough childhood, hence the great father he is. and I lost both of my parents by age 18 to car accidents. they say God doesn't give u more than u can handle but i just don't know sometimes if he got the right person...
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#8 User is offline   mjtpopus 

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Posted 22 May 2009 - 02:16 AM

I agree with CollegeGirl, communities can be very helpful. There was a charity fundraiser at my highschool to raise funds to renovate my parent's house after my injury. It was amazing how the community just pulled together for my family and me. Also, the state might have grants available for that kind of thing as well. Contact the Social Security office to see about Supplemental Social Security and you might have a Rehabilitation Office that specializes in job training and getting funds for health equipment.

I wish you luck and I hope things work out for the best.
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#9 User is offline   Jessesgirl511 

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Posted 22 May 2009 - 07:04 AM

Hi Momaof2

I just want you to know that you are not alone. We are all here for eachother, that is definatley one thing I've learned since joining this site. I to am a "newbie" and I am so thankful that there are other people out there that know what we've been through and will go through for the days to come. It's been almost 6 months now and I still remember how over whelming everything was, the "panic mode" will calm. For me, when he got out of CCU (the worst days of our lives) and into a rehab facility things started falling into place. There are people that will help you find resources, I remember I thought I was going to have to arrange everything and didnt know where to even start. After 2 long, long, lo---ng months in rehab (which by the way was 3 1/2 hrs away from home), he finally was discharged. You will be educated and trained on how to care for your husband, and he will be as well. We went through the most challanging, amazing, scary, frustrating experiances there. And I'm sure you will too. Just know that there is help, support, advice, and listeners here and we welcome you and your family with open hearts

Also, money is always a biggy. Well at least it is for us. And I'm not sure what your state offers for disabled peoples'and ther families but here in California, if the person is eligable, they will pay me or anyone the person choses to care for them. There are more specific details but it really comforted me knowing that. And you mentioned that your hubby was a construction worker, my fiance was in Air Conditioning and Heating and had tons of customers and friends and well one thing that you can start to think about are fundraisers. Your community can be very helpful. We just had a fundraiser and everything was donated (food, beer,wine, raffle gifts, silent auction gifts) and all the procedes went to us. We charged $40/person, charged for the drinks, raffle tickets, etc and about 300 people showed. We made about $35,000, it seems like alot but with these injuries nothing is really cheap. just some ideas. Maybe too soon to think about it now but down the road it might come on handy!
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