What do you need?

[marmalady]

Hi everyone,

Welcome to our newbies - I hope you find the CareCure community as valuable as I have, both in information and emotional support.

For everyone - There's a post on the Life Forum by Steven Edwards that asks, 'what do you need to get your life going? What's holding you back?

I'd like to ask the question of all of us caregivers out there, also - what specifically do we need to happen, to regain some sense of normalcy (whatever that is!) in our lives? Is it lack of aides, physical exhaustion, living space, schedules?

Can we give ourselves a time frame - say, in one year, we'll be doing this to reclaim our lives; does anyone feel 'guilty' about wanting/having a life of their own, when their spouse/child/sib has a spinal cord injury?

It's getting toward the end of the year; that means a new year is beginning, a new chance to look at ourselves, our situation, and maybe a rebirth of our sense of who we are, separate from our family members and their needs.

God bless us, every one!

[joseph]

Good stuff. I'll think more on that. I think we have alot in common Marmalady, by the way what is your first name?Our boys are almost the same age, were injured around the same time and have the same level of injury. Very interesting.

[marmalady]

Bumping this up - it's an oooolllld post, but timely I think for some of our newer members!

_____________
Tough times don't last - tough people do.

[marmalady]

Bumping up again for the new year!

[kate]

I need a reason to stay hopeful.
I need to have my mind engaged productively.
I need to know I'm not alone.
I need time in my garden.
I need silliness.
I need good books to read.
I need a double tall nonfat latte, extra foamy!

[PN]

Moving forward in life while in a wheelchair:

In real estate there is a saying "location, location, location" and this is what is most important about buying a home or the location of a business. For people with spinal cord injuries, I think, from my experience, the saying is "stability, stability, stability."

I need dependable caregivers and a long-term "fix" for this new problem so I can have "stability."

PN

[SoulMate]

I need a
vacation
vacation
vacation
http://sci.rutgers.edu/forum/images/smilies/smile.gif

We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

[Pam Baureis]

When David moved in with us, I needed more space. Well I'm getting it. We will start building the addition in about 1 month. David will have his own room 25x25 and a carport too. The next thing on my need list. (which is very long). A Dishwasher with David and all his friends coming over I do alot of dishes. I'm happy to have my son with me.

Pam Baureis

[marmalady]

Ahem- Pam - Get some of those big, hungry, strong bodied friends of David's to roll up their sleeves and help with the dishes!!!!

What do I need? My list would be very close to Kate's - thanks for putting it into words, Kate, ya made me cry!

[kate]

Jackie, dear! You're one of the people who makes me know I'm not alone. Did you read HandiBob's post in Cure? Lifting his hips off the mattress???! Now that's what I call a reason to stay hopeful. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[marmalady]

Dearest Kate - and everyone else -

"Hope is like the sun which, on our journey toward it, casts the shadow of our burdens behind it. - Samuel Smiles

_____________
If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

[KDK513]

Beautiful thoughts everyone!

[Obieone]

I usually haven't got a hot clue what I need ....until after the fact... http://sci.rutgers.edu/forum/images/smilies/biggrin.gif I do know I need to feel validated!! I know I need you guys ...

Probably take you all for granted...don't really mean too...but I do know I'm awful glad your here to "use and abuse"!! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

Thank you! http://sci.rutgers.edu/forum/images/smilies/smile.gif

Obie

[Stacey]

I agree with Soulmate, I need a vacation! Some place alone and warm, lots of sunshine, no doctors, no fighting with insurance companies and no teenage kids! It's been 18 months since Joe's accident, and I am exhausted. I miss all of you and the support I get here. No one else understands how hard this life can be except fo all of you who are in the same boat. Thanks for being here!
Stacey

[espousal]

Originally posted by Stacey:

It's been 18 months since Joe's accident, and I am exhausted.
Stacey

Stacey,

This sounds very familiar, and it also sounds dangerous. You are very new at this SCI life, as am I. It's a hard road for sure.

Since this is in the caregiver forum I feel completely qualified to espouse.

Your recognition of exhaustion is a valuable indicator of the need to take care of yourself as well as your husband. My wife is 14 months post injury, and I share the same feeling of exhaustion. It's not just physical, but the emotional drain from fighting with insurance companies, consulting with doctors, locating quality PT, home modifications...

It all drains you. And yet, you feel as if you have no room for complaint or expression of your grief. You can look at the burden placed on you and compare it to the burden placed on your spouse; and feel guilty about needing to take a break or thinking about yourself at all.

I'm learning, very slowly and very reluctantly, that I need to take some time for myself. I need to wake up early and go for a run, spend some time in the gym, sit down with a book and not think about SCI for a few goddamn minutes each day.

When I don't take the time for myself, I feel resentful and angry about my wife's injury. When I do, I can embrace the fact that she is alive and doing well, and able to enjoy life to its fullest, despite the injury.

Bottom line: It's important to take care of oneself also.

[Obieone]

Espousal thank you for articulating so well those feelings we all share! I was feeling guilty for having some feeling of relief when my husband finally went into the hospital as a result of complications that arose after a very major surgery in the Spring of last year! I was tired and spent from having kept him home probably longer than I should have! It was a good decision as its turned out he is recovering very well and we (the family left at home) have had a chance to recover as well. Guilt is emotionally and physically draining and needs to be managed very carefully!!

Aren't we fortunate to have "the Santuary" to come to and share these thoughts! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Be well all!
Obie

P.S. I went back and counted the number of times I used the word "feeling" in that post http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif ... many! Maybe we should call this the "Feelings Santuary"... http://sci.rutgers.edu/forum/images/smilies/wink.gif

[Stacey]

Espousal, I feel so much guilt whenever I think about doing something that Joe can no longer do. I would love to start running again, but I don't know if I could do it. We used to do that together, I guess I feel I would betraying him. I know that I need to do things for myself, I just don't know how to take that first step. It is so nice not to have Joe depressed, he actually is happy some days, I don't want to set that back. But I also have the resentment and anger that I no longer have a life of my own. IT's not just Joe, it's also the kids (6 of them)and trying to keep it all together. I am also an oncology nurse. I feel like I give so much of myself to others throughout the day that there is nothing left for me.

HOw have some of you overcome the guilt? Was your spouse angry with you for soing things they can no longer do? That is my biggest fear.........
Stacey.

[kate]

Originally posted by Stacey:

I would love to start running again, but I don't know if I could do it. We used to do that together, I guess I feel I would be betraying him.

How have some of you overcome the guilt? Was your spouse angry with you for doing things they can no longer do?

Stacey and Espousal (and everyone else who might be thinking through these kinds of questions)--

I'm only a little ways beyond you; Bruce got hurt 3 years ago this Sunday. There are still some things that I avoid that I used to do with him --the sauna is the best example. It was our place to go and be quiet together, or talk, or rub each other's feet, or have the fight we needed to have.

In the years before the accident, we went there together a LOT, like, a couple of times a week.

It took me more than a year to go back alone. Partly it was guilt, but mostly I just didn't want to be reminded so hard of what I'd lost. I think that picking up any piece of my old life is painful . . . because if I'm doing it alone, it's not the same.

I'm lucky, because Bruce has never, ever been resentful or rude about this stuff. He assumes I have a right to be happy, and he expects me to do what I need to do to get there. I want the same for him . . . but I can't enjoy the sauna in the old way, and I don't much go there anymore.

[lilsister]

Stacey, it sure sounds like you have your hands full! At first I felt wierd also with doing physical things with my brother. But life must go on and I felt that maybe I would be accussed of coddling him, so I just started doing things. For gardening it was 'just to keep me company and get some vit d-and then ask him to hand me something or opinion on something. Also just told he had to be my escort at a street dance/concert cause I was afraid to go alone, and after a beer we just started dancing. At the gym, he gets therapy while I use the treadmill and machines-then he coaches me on the freeweights. I think he likes bein' the coach. And when I feel the need to get away for a few hours now I just say that, and he has never objected or 'made' me feel guilty. I'll usually provide an entertainment for him. Maybe one of your children could spend some quality time with him while you get out? Next time you are due a gift like b-day, mother's day, etc, try asking for a time out like a massage, concert, bookstore visit, museum visit, some thing that's for you and away from home. I guess it finally dawned on me that he probably wants some alone time as much as I did.

[marmalady]

For Stacey, and all our newer members - I've bumped up this topic, "On Caring from a caregiver' (http://carecure.org/forum/showthread.php?t=10732), as it is one of the true jewls of this forum, written by one of our first members here.

_____________
If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

[betheny]

I think lilsis makes an excellent point re the sci's person possibly needing time alone. I still require it. Also, if my family doesn't do any of the things they want which I can't participate in, that makes ME feel guilty. I really hate guilt, it's a unproductive emotion. I would much rather be home alone than feeling guilty in a room of people who aren't having fun because I can't. Stacey, I'm so glad he's coming out from under that cloud. I had been wondering...the thing is, you weren't responsible for the cloud. You didn't give it to him and you didn't take it away. I echo Marmalady and lilsis here, you must take care of yourself. Especially with all those kids! Not to mention an emotionally draining job which not many people could do. Don't martyr yourself to his sci, please. I think we, the sci people, fight like demons trying not to. I sure don't want the people I love to have to. Good luck, girl. Please take care of yourself.

C5/6 incomplete, injured Aug. 2000

[Stacey]

You are all so great, I really miss this place. I guess what I need to do is talk to Joe about how he feels about me soing things he can no longer do. I feel like I tiptoe areound so much trying not to upset him. It's hard because we always did everything together, we were best friends. Doing these things alone now, just aren't the same. I do need to get into running again, I have gained 40 pounds since his accident! With my family history of cardiac disease, I can't afford it!
Some ggod news, I have a pregnant maltese puppy. She should be due in 3 weeks. Every time I look at her I feel guilty, the poor baby. I have ever let her have the spot on the bed between Joe and I.
Thanks for all the advice. I have taken care of everyone all my life, it's hard to stop. I will keep trying though, I so desperately want to be happy again.
Stacey