17 replies to this topic

[Trishtack]

Hi all - My name is Trish and my husband became paralyzed on 9/7 of this year. He didn't have an SCI but had a fibrocartilaginous embolism that left him paralyzed from the waist down. Perfectly healthy prior to this event. We have a 3 yr old and have been married for 7 yrs and together for 10 yrs.

I am really struggling with everything. He can do anything they ask in rehab but once he is home he will do nothing. I have to dress him, do his bowel program, make all his meals, give him his meds, etc. He has not left the house once to eat out or do anything other than go to rehab. As of last week he has stopped going to therapy.

I work as an Analyst during the day, teach at night online for a university, care for our daughter and my two elderly parents that live 30 minutes away. We had to buy a new home to met his needs and I purchased that and am having it modified now. We are having to sell our home we had built four years ago and will be moving hopefully next week into the new home. He has not even gone into the new home. He saw the outside but said he would just wait until everything was done to go into the new home.

I am just not sure how to move forward and how to help him. Any thoughts or ideas?

Right now I have a nasty cold/flu bug that makes all this seem 10 x more desperate than it probably is.

I would welcome any advice, support, information. Thanks!

[qman]

wow, sounds like you have a lot on your plate.

hang in there, your husband will deal with it in his own time. just be sure that you look after yourself and get some time out.
dont burn out.

[Trishtack]

qman, on Dec 11 2008, 01:27 PM, said:

wow, sounds like you have a lot on your plate.

hang in there, your husband will deal with it in his own time. just be sure that you look after yourself and get some time out.
dont burn out.

Thanks so much. I think we are just at the edge of this and sometimes I forget that it's only been 3 months. He hasn't had time to accept, adjust, or grieve really. It helps so much to read these posts and see what progress is made over time.

[kdenon01]

Yeah, you have SO much going on right now. I couldn't even imagine how stressed out you must be.

My husband was paralyzed a little over two years ago. The first year was the hardest for us...well me mostly. My husband adapted quickly, I didn't. I think you really do have to give him some time to get through everything. But don't stress yourself out for him. Don't do too much for him. I found that the more I make my husband do himself, the happier he is...it helps him to feel more confident.

You both have been together so long, I know you can get through this awful time.

Over time he will hopefully feel more confident going out. I know that getting out of the house is very important to my husband and I. We try to get out everyday and get some lunch, or dinner, or see a movie, visit family, shop, etc.

Keep you head up. Any questions just ask!

[Lucydog]

I think you have to start stepping back gently and let/make him do things for himself. The more you do for him the more reliant he will become and in the long term believe he cant do anything. Id start by leaving him to get dressed or making sure he sorts his own breakfast out, or something simple so you wont stress about it but something you know hes perfectly ok to do. He may not want to do it but thats his choice. Slowly you need to be 'unavailable' this is for everyones mental wellbeing in the future. You cannot be all things to all people all the time, and your husband has to realsie that. I know its hard but you need to try to work together as a unit and not be the one carrying the whole show. It doesnt work.
Take care
L

[Trishtack]

Thanks so much everyone. I will definitely take the advice about stepping back a little. It is so promising to know that so many people live great full lives. I hope to get Ed to this site tonight so he can start finding a place to share his feelings that isn't so close to home.

[hooplady]

I will preface this by saying that I can tell you lots of things that you "should" do; it's easier than putting these things into practice myself. And I don't have kids and/or elderly parents in the mix like you do!

Do a little less for him, ask for help, accept that things won't be perfect. Three months is soooo early - neither his body nor his mind know quite what is going on right now.

Rehab is like a little safety bubble - he had structure and goals and people telling him where to be and what to do. Food appeared magically and there were little elves to make the beds and scrub the floors. Now he's home and each 24-hour period is allllll hiiiiiis to fill as he sees fit...quite a daunting task when you consider it.

Your body is telling you right now that you're doing too much - take a minute to breathe and regroup, or you risk getting really sick...and then where will they all be? You're running on pure adrenaline and you need to stop to let your emotions catch up...which is scary but you need to let it happen nonetheless.

If you can get him here so he can ask the questions that he really wants to ask, from the people who really know, that will be a great accomplishment. It will put him more in charge of his own destiny and give you one less thing to worry about.

Hang in there...this is probably the toughest thing you will ever have to do, but you will look back in a year and say "Wow, we survived!"

-Janet

[In love with my paraplegic]

Trishtack, on Dec 11 2008, 06:25 PM, said:

Hi all - My name is Trish and my husband became paralyzed on 9/7 of this year. He didn't have an SCI but had a fibrocartilaginous embolism that left him paralyzed from the waist down. Perfectly healthy prior to this event. We have a 3 yr old and have been married for 7 yrs and together for 10 yrs.

I am really struggling with everything. He can do anything they ask in rehab but once he is home he will do nothing. I have to dress him, do his bowel program, make all his meals, give him his meds, etc. He has not left the house once to eat out or do anything other than go to rehab. As of last week he has stopped going to therapy.

I work as an Analyst during the day, teach at night online for a university, care for our daughter and my two elderly parents that live 30 minutes away. We had to buy a new home to met his needs and I purchased that and am having it modified now. We are having to sell our home we had built four years ago and will be moving hopefully next week into the new home. He has not even gone into the new home. He saw the outside but said he would just wait until everything was done to go into the new home.

I am just not sure how to move forward and how to help him. Any thoughts or ideas?

Right now I have a nasty cold/flu bug that makes all this seem 10 x more desperate than it probably is.

I would welcome any advice, support, information. Thanks!

Hi Trish,

I am a wife of a paraplegic and my heart goes out to you,please feel free to ask me anything I would love to answer any questions or help in any way i can.you can also email me at tammyvonlogan@yahoo.com

Thanks,
Tammy

[catmint]

Hi Trish...

A bit late but I only just spotted your post.

Welcome to this site.. A great place to find advice and support.

L

[Trishtack]

Thanks so much to all of you. We had a great conversation on Saturday night which I hope is the first of many. My daughter and I have been extremely ill with a nasty bug. I think I ruptured an eardrum from coughing. Geez louise.

I sincerely appreciate all the advice and kind words. Our new home should be ready by Wednesday. I can't wait to get moved in. It feels like a chance at a fresh start.

[qbounce]

Glad you both talked this weekend. That would have been my advise. Don't hold your frustration in. You're BOTH going through the same process of anger, grieving and loss, not just him.

Many marriages don't work after something like this. So, in the course of things if the same problems continue to arise, counseling definately couldn't hurt either. I know I'm jumping ahead a little . . . you know, new injury and all.

Wishing all the best to you and your family during this Holiday Season.

[awasm]

Hey Trish:

My wife is now 10 years out from her accident. She's a T-3 paraplegic. The first three years were pretty tough. She didn't think she could do anything for herself. But then we encountered this wonderful physiarist that instilled in her the need to keep her body strong and make the decisions needed to move on with her life. As a result she accepted the fact that we needed to move to an accessible home and she also began a workout regimen with a personal trainer. Now her balance and upper body strength have improved dramatically and she will try almost anything. The first few years are the toughest. We didn't know what the future held or what to expect. Now we have pretty much settled into a routine and know what to expect. Hang in there, things WILL get better. He's a lucky guy to have you in his life.

[VSTARK]

Greetings from the Black Hills of South Dakota! Trish- this is the first time I have been on one of these sites so it took me awhile to figure it out...OOPS! My name is Vince, i have been paralyzed for 1 1/2 years I am 44 years old and I'm paralyzed from the sternum down. Which in para-terms is a lot more than your husband. I am a victim but I do not see myself as one. I wrecked a motorcycle. I knew the risk and I did it to myself. I accept it. I recently married the girl that went through the whole thing with me. she helps me a lot..maybe more than she should sometimes. I can and do dress myself and do my own bowel care. Some times she helps with my dressing, but NEVER the bowel care-unless there is a bad wreck (accident ). Help with bowel care would be extremely demoralizing for me. the first few bowel wrecks at home I got mad and then there was anger and crying. Then there was just crying. After we got tired of that(which didn't take long) it turned in to laughing...Face it- s**t's funny! We both take great pride when i have a good poop! There is no dignity(which is very important for a man) in this new form of taking a crap; but i still find some pride(which is also important for a man) in a weird sort of way. If your husband had a sense of humor before, he needs to find it again, it will get you through anything. At first there will be more bad days than good, eventually there will be mostly good. Also keep in mind that grandkids think that grandpa in a chair is really cool and a lot of fun. I promise you that!!! And that day will come sooner than you think. It may sound stupid and crazy right now, but life can even be better in ways than it was before!! don't forget to laugh and don't forget to take your stool softeners!!!
I hope everyone gets better and try your very best to have a merry Christmas!!!!!!!!!

p.s. My wife would be more than happy to chat with you if you'd like.....

[Trishtack]

Hi all,

Happy New Year to all. I hope this new year brings a fresh slate for those that need it and is full of opportunity for all.

We are doing okay but have had a few setbacks. My husband's body sweats profusely from the knees down and the combo of sweat and posey feet pillows caused the skin on his feet to break down. Yuck. So he has been in bed most of the last two weeks trying to heal.

Our new house is ready but we haven't moved in yet. He still has not saw it so keep your fingers crossed that he likes it.

I appreciate all the kind responses. I would really like to talk to the spouses that offered. Thanks so much and I will drop an email by this week.

We are having a quiet eve. We are diapering our daughter's "new baby", reading books and my daughter and husband are having the nightly Spiderman vs. Green Goblin fight. Our daughter has a Spidey mask but we didn't have anything for the Green Gobln (my husband) so.... the green depends packaging became the Green Goblin mask. How's that for making lemonade out of lemons.

Thanks again for all the hope that is offered in these postings.

Best wishes - Trish

[hooplady]

Trishtack, on Dec 31 2008, 10:52 PM, said:

.... the green depends packaging became the Green Goblin mask. How's that for making lemonade out of lemons.

Ohmigosh Trish you made me snort coffee out of my nose I laughed so hard! What a great attitude you have and what a great lesson you are teaching your children!

Here's my suggestion to manage the sweating - get him on something that's natural fiber - cotton, wool, anything that breathes. I swear everything they make for the disabled is made of polyfoam and velcro. It's like wrapping them in plastic wrap - as you have found, soon there's swamp funk. Yecch.

I went to the local thrift store and bought some old wool/cashmere sweaters, washed them in hot water and put 'em in the dryer. Yes, they shrink but they still retain the properties of natural wool which wicks away moisture and allows the skin to breathe. Because they've been pre-washed they won't fray so you can even cut them into smaller pieces to tuck into his Posey boots or wherever he needs a little soft support. When they get icky just throw 'em in the washer again.

There are probably more high-tech solutions but hey, I'm way too cheap.

Hope you are having a Happy New Year!

-Janet

[Trishtack]

Hey Janet - I'll take cheap! We have had to spend so much these last few months. I get so angry at how expensive things are just because they fall under the medical supply category!

I definitely like the wool idea and my husband was the king of the resale and auctions so we know all the resale shops in our area.

Btw, does anyone have suggestions on the best type of bed for my husband? I have been looking at the Select Comfort 9000 but I hate to spend so much money if it doesn't make a difference.

Thanks all,

Trish

[JesseB]

Trishtack, on Jan 1 2009, 01:56 PM, said:

Btw, does anyone have suggestions on the best type of bed for my husband? I have been looking at the Select Comfort 9000 but I hate to spend so much money if it doesn't make a difference.

Thanks all,

Trish

I just have this Foam mat thing ontop of my bed I used before i was hurt.

so far so good. ;]

Plus, hell of a lot cheaper than buying a hole new bed.

[kdenon01]

We use a temperpedic, it's awesome!