Hi Nikki,

My husband is a C3-C4 quad. He has been injured for 8 years. We have been married 17 years and have 2 sons. My husband has hospitalized for 9 months after his accident and as been home ever since.

His care is pretty intensive. He has no movement or function below his neck and has a trach to help with his breathing. I do much of his care, but we do have some paid nursing help to care for him while I work.

This is a big adjustment for both of you especially with his injury coming so soon in your marriage. I hope you can find some support here. That’s what we are here for; to support each other.

Hi Nikki,

I am in the same situation, I am the caregiver to my husband who is also a T-4. My husband has very good trunk control now, 20 months after paralysis. But your husband must do physcial therapy. My husband is 52 years old. Your husband can and will improve.

I also am the sole caregiver for my husband with a C-4 injury. It is alot of work, but it created a stronger bond between the two of us and has also made the connection with our children (different but) stronger.

Be strong, but don't hesitate to ask for help from family, friends, and professionals.

Valola

I too am the primary caregiver to my husband of 20 years. His accident was almost 3 years ago and is a C2 incomplete and has much of the same challenges that you've brought up. It is really tough position to be in, trying to juggle kids needs, his needs and god forbid your needs. You can only do the best you can, I can completely understand where you're coming from.

Jeannie (posted under my husbands id)

Hi Jeannie,



Welcome. Seems like there are many of us here struggling with the same issues. I guess sometimes it's just nice to know you aren't alone. Hope you will continue to post.

Hello ladies,







I am saying hello ladies because it seems that so far only ladies are in this forum. I can not help asking why this is? I wonder if there are any gentlemen out there who are care givers like us. If so, can you please give us your perstective. How do you feel being a care giver?



Hope we hear from you.

Hi there Ladies, it's a pleasure to meet you.

My hubby is a C5/C6 quad with a TBI. Due to circumstances, I haven't yet been able to be his caregiver but as soon as immigration let me back into the US I will be!! I am so glad that we have this forum to be able to support each other.

Hi Nikki,

My husband is a T4, fell in our pool last summer, and I am his primary care giver. It has taken some time, but he is able to do more for himself, understanding there are many challenges and obstacles. He is very good a problem solving, even came up with leg straps that enable him to lift his legs and move them around all day and night, just one example. I can give you our web site if you would like. To top it off, we found out he had cancer in March, which he has kicked using an alternative therapy (docs gave him 2 months to live, its been 5 now)

This is my second time around with and SCI, our daughter was in a car accident 12 years ago and is also a T4. She has gotten better over time too, got married and had a baby.

This is not easy, but its our love that gets us thru it. Someone mentioned using friends and family and professionals and this is great advice, they can give you a break. Try to get time away and take care of "you" so you can take care of him and be renewed when you return (should take my own advice here too). I would be happy to chat with your personally if you need to, email me at adirondackstills@verizon.net.

Linda

I have to say that although this is a terrible situation to be in, it's nice to find other women in my shoes. I am the primary caregiver for my husband, Ben, who is a C4/C5 quad. He was injured 2 1/2 years ago just before Christmas. It has been an interesting journey... One that is extremely tough but has made us better people and a better couple. It has also helped our family. Our daughter was only 4 months old when Ben hurt his neck. It wasn't an easy first few years but things are getting much easier. It did take a long time.

Get help. We have a nurse come monday through friday to help get Ben ready for work (he works full time). We are surrounded by family and friends who help us with everything we need as long as we ask. So ask... Those that tell you to ask really do mean it. GET HELP. Get equipment to help you at home and people to help you as well since you'll need a break from being a caregiver.

Take breaks and take care of yourself since that's what matters. You are his wife and his caregiver and you need to make sure you put yourself as the wife first.

Good luck! You're not alone.

Erin

Hi Ladies,

It's really lovely to read you.. I've been with my hubby for 4 years (we married last year). I longed for someone to talk to in the beginning, someone in the same boat, just to help me through some questions and personal issues, and wondering how possible life together would be. I finally tracked down someone and chatted to her for an hour on the phone. That hour let me realize how possible a family life can be, and how fulfilling life could be, with a deeper love than a normal relationship. But it can also be exhausting being super-woman, as all of you are saying... make time for yourself. If your batteries are recharged and you're happy, that will spill over onto your hubby, and he'll soak it up and heal from the inside out.

Sylvia, what is TBI? Nikki, if you have any personal questions, catheters, etc, don't hesitate to ask and I'll try and help where I can. We don't have all the best answers, but one learns to become a McGyver and find innovative and unusual ways of doing things. I'd LOVE to learn how others manage around the house. jessica@themoment.org.za Our wedding pics at www.themoment.org.za. Francois is C5/6 complete, and he's an absolute sweetheart.

Take Care, Jesscia

[size=3][/size] Jessica, it's short for Traumatic Brain Injury. My hubby suffered strokes from when his brain swelled after his accident. He now has visual impairment and memory problems.

I am also the only caregiver to my husband. He has a T4 injury level. He is 62 years old and was injured 5 years ago in a motorcycle accident. It has been a very long journey. Just recently I had a mental breakdown and ended up at the hospital emergency room. I have now found a psychiatrist and a very good therapist. The common theme I see in your post and what I am hearing from friends and therapist, is to take time for yourself. Take breaks and ask others for help. This is easier said than done sometimes. My husband has handled this situation with grace and continues to be my hero. He doesn't have a lot of balance and his left hand and arm were injured so not a lot of grip. However, he drives, he takes himself to doctor visits, does grocery shopping, laundry, dishes, etc. It wasn't easy in the beginning and I really think that this past year, is when the real greaving has hit me. Before, it was all about him, learning how to take care of him, worrying about everything, keeping up with everything myself. Now, I am trying to let him handle things that he can and am working through the grieving process.

Hi! I am also the primary caregiver of my C6 quadriplegic husband. We've been married for almost 26 years and he's been injured for 24 of those. We have one daughter (almost 25). We were fortunate to have personal care aides coming in at least every other day in the first couple of years post-injury. That really helped, especially with the little one running around at the time. Over a few years, I took on more and more of the care myself. Right now I am the sole caregiver, but if I go back to hospital nursing (I've had my BSN for 18 months), we'll hire someone again. I agree with the other posts...it is really important to take care of yourself! Women, by nature, are more nurturing...we take care of everyone else before we care for ourselves. Try to put together a support system for those times when you need to take a break. The first few months (even years) can be tough; you are both learning the routine of your new life and he is still gaining strength. It'll get better...just make sure not to forget about yourself.

Hi Nikki,

My fiance suffered a spinal hemorrhage (no known etiology) and has been a T-4 paraplegic since July 2008. He spent 6 months in hospital, and I became his sole caregiver when he returned home in early 2009. We are both 31 years old now.

Looking back, I can honestly say it was a nightmare. Then again, certain circumstances at the time made things a lot more difficult then they had to be (e.g., I was living in a city far from home, I was attending university full-time, we lived with his alcoholic brother, etc.). I didn't have anyone to talk to about what I was going through, and didn't seek help because I thought I could manage on my own. My fiance became very dependent on me, and I felt overburdened with responsibility. As a result, I became depressed, anxious, angry, resentful, and overweight.

Everyone you know will have opinions on your situation and try to give you advice. Only a person who has experienced what you are going through can truly understand your feelings and your needs. If you would like someone to correspond with who gets exactly where you are coming from, please let me know.

Good luck Nikki!

Linda,

May I email you for your web address? My husband is a new SCI patient and I need help like everyone else.

Thank you,
Mary Moore

I'm 20 and I'm a caretaker for my 24 year old quadriplegic brother. He got into a car accident a year and few months ago. It is one of the most amazing jobs, easiest, and most difficult. In such horrible situations, it is truly amazing to be able to help the people you love. My job is basically to spend time with my brother. It is however difficult at times because your "job" and home life blend into one, and that is something extremely unique in both good and bad ways. 
I know how difficult it can be to not only play a role you never expected to, and whatnot but I give props to all the people who have posted on here. I'm a college student, I don't have kids or another job, and sometimes I get overwhelmed. For all of you with kids ands other jobs and everything else, well I give you props. Your husbands sound very lucky to have you guys!

Hi amy. I'm harshit. I'm also suffering from the same problem. i'm also 24 years old and a quad patient since aug 2006.. I read about your brother's condition.. But you are doing a fantastic job. Hats off to your commitment.

HI Harshit, thank you very much. I see the everyday difficulties that come with this problem as well as long term, and I wish you all the strength in your journey.

Thank you for your wishes.. I can understand your condition because i'm also going through all this.. But i'm here to support you and your brother. What is his name??

Hi Amy,

I was 24 when my brother became a C-2 quadriplegic, and he was 22 at the time.  That was nearly six and a half years ago.  I was one of his primary caregivers for the first couple years before I was relocated with my job too far away to drive to be with him on a regular basis.  I visit often, but my mom is with him most of the time these days.   

Being a caregiver is rewarding, but you're right that it can be very overwhelming at times!!  I've spent my fair share of time in tears between feeling the weight of responsibility on me and pure heartbreak as I've watched my brother struggle through pain and obstacles.  It's important to be there for your brother, but I hope that you are taking time for yourself too!  You still have your own life to live.  I had to remind myself of that for the first few years. 

One of the good things to come out of all the mess that spinal cord injuries can bring is that my brother and I have developed an unbelievably strong sibling bond since his injury.    When the rest of the world is crazy (especially parents), brothers and sisters can talk, cry, and laugh about it together.  I can't imagine not being able to talk to my brother about anything now.  He has also inspired me to have more passion for life.  I love him so much. 

Best of luck to you as you continue to spend time with your brother.  It is not an easy road, but it gives back more than you can imagine. 

Shannon

Thanks for sharing!  I felt, and sometimes still do like we are alone in all this.  It is really nice to have a place like this to turn to! 

Hi Renee O, although my situation is similar yet different I am eager to ask how you made the choice to take time for yourself? My husband is a T-6 paraplegic and we have 3 small children. I often feel guilty if I go to the store by myslef let alone any real time alone. Like you and your spouse, my husband and I were married only a short time before his injury so this life is the only lifesylte our marriage has known. It is very difficult and emotionally draining yet I take my vows seriously and will not abandon him. I fell in love with his heart, not his legs. Any and all advice would be appreciated.
Roxanne

Roxanne-- Hi! I had to go back to see what I wrote. Yes, it can be very difficult and emotionally draining, but I'm sure that you've experienced really great days along with the more difficult ones. It wasn't always easy to make sure I took time for myself, but I realized very quickly that if I wasn't taking that time, I wasn't at my best for my family. I do see a therapist occasionally (something else I figured out over time), and she makes sure to keep me on track with self-care. Taking time for yourself could be as simple as taking a little time for a walk (alone or with a friend), going out for a pedicure (not my personal favorite, but I'm told that it's a very relaxing experience :-) ), or going out for lunch or coffee with a friend or two. It can definitely be more challenging with small children, and you have 3! You don't say how independent your husband is, but I'm sure he and the children might like the time together, too. My husband and daughter have funny stories about their adventures as "partners in crime" when she a little girl and I was out alone. It helped them to forge a closer relationship with one another. Our "normal" definitely changed; for Steph, all she remembers is Dad in a chair. It made us all so much closer as a family as well. But it so important to take care of yourself, since you really are the one that the family looks to for everything, really. :-) Let me know if you want to correspond via email.

I am so happy to have found this forum. My husband of 34 yr  just sustained a C6-C7 complete spinal cord injury and is tetraplegic,  from a bicycling accident three weeks ago. He is currently in a wonderful acute SCI rehab. It has been an overwhelming nightmare despite his amazing spirit and the wonderful support of friends, family, neighbors and the entire community. However, I need to take the advise of so many of you, to take time for me. My husband is so intense and so much he needs done to ever come home. I have tried to be there with him daily to learn all i can about what we need to get him home and how to care for him. This has been draining! The rehab is 5 hr from our home but furtunately have grown sons that live nearby that I am staying with. They have been a tremendous help and make me proud. I am encouraged to read about your loved ones returning to work, self care and independence and have no doubt my husband will get there with lots of time and hard work. I am personally struggling with finding what my new life will be and how all the things I/we did will fit in, including my job. People want to help but my husband is proud and will want to do it all himself. This makes me feel more burdened. I hope he will eventually let friends who want to help us at least releive me. I would love to hear from anyone who has been through this and may have words of wisdom to give me some pointers. Eileen


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