27 replies to this topic

[my-sister]

Hello to all. I'm came to this site to seek out peer support. My beautiful 36 year old sister fell from an extension ladder on November 10, 2009. She was life flighted on that day, went thru two cervical spine surgeries, was on a ventilator, but has successfully weaned, and is now C-5 incomplete.

She was hospitalized in a city 3 hours from our home... so... I dropped everything to be there for her. I stayed with her for every moment I could humanly achieve... mostly 16 hour days... I learned every possible thing I could about how to help & care for her.

She spent 1 month in SICU... then went to a leading rehab hospital, where she spent a tad over 2 months.

I secured a hotel room for the entire time ($$$$$$) and was there 6 days a week, and switched off with her husband on his weekends off.

I made it my priority to be my sister's voice (when she had none), to help her hold on when she was struggling to live, to encourage her & move her body in therapy, to be her hands and her fingers while hers are not functioning.

Now she is home. And I am trying to let go a little... and allow for our parents and her husband to be a part of the care-giving team.

I guess, being hands on involved, with a perfectionist approach ~ has helped me to feel some sense of CONTROL.

I feel proud of myself that I have been there for my sister. And I will continue to be there for my sister.

It frustrates me that the hierarchy of care givers is OFF. I have an expectation that her husband would be more THERE. Like ~ he said, "if I don't go to the gym, I will go crazy"... so he makes time to do that, but doesn't show up to care for my sister

I feel like ~ "if I didn't care for my sister ~ I WOULD GO CRAZY!"

It frustrates me that her husband says "I have to make some important calls and get the house ready" ~ but the house is still full of boxes and not even close to ready for my sister.

It frustrates me that her husband is LATE when he is scheduled to help my sister get ready and into bed... or when he doesn't show up all day long (and he's 50 yards away) and then shows up for a "visit" and ends up interfering with the schedule for her bowel routine.

It frustrates me when he rubs her too hard or yanks her sling down and under her leg too rough, or when he disregards safety procedures and goes to unbuckle her seat belt before he tilts the chair back a bit.

When I break away (and I know that it's healthy & I must do that) but when I break away ~ I am anxious to get back to her. I miss her and WANT TO HELP HER. But I know that I'm not super-human and I can't do it ALL and ALL OF THE TIME.

I guess I feel afraid that the other care-givers in my sister's life cannot care for her good enough. I REALLY FEEL AFRAID OF HER HUSBANDS CARE! HE POKED HER IN THE EYE WITH HER DRINKING STRAW IN THE HOSPITAL, TOLD HER TO DO A 360 IN HER WHEEL CHAIR (WHILE SHE WAS STILL LEARNING TO DRIVE) AND DIDN'T PAY ATTENTION TO HER SURROUNDINGS AND SHE GOT HER ANKLE/FOOT SNAGGED ON THE WALL DURING THE TURN AND TWISTED IT BADLY, HE SCRATCHED HER SCALP SO DEEPLY WITH A BRUSH THAT HE MADE HER SCALP BLEED... HIS CARE TERRIFIES ME!

I've been patient with him, encouraging him, coaching him... BUT WOW!!! DOESN'T LOVING CARE JUST COME NATURALLY???? I JUST DON'T GET IT AT ALL! IT DOESN'T COMPUTE TO ME!

So... this is really the SMALL STUFF... there are so many more challenging things in this world... like DEALING WITH THE LOSS OF YOUR FUNCTION AND LEARNING A NEW WAY OF BEING AND FINDING THE JOY AND THE GRACE THRU-OUT...

None of what I just typed or vented about will STOP ME FROM ALWAYS LOVING AND CARING FOR MY SISTER TO MY HIGHEST ABILITY. THE FRUSTRATION WON'T STOP ME FROM GIVING HER EVERYTHING I HAVE TO GIVE...

And if the opportunity presents itself ~ I'll try hard to kindly WORK IT OUT WITH HER HUSBAND...

But until then ~ I'm on a LOW SIMMER

Thanks to any and all for listening... God Bless you.

[tessa]

Hi from one care-giving sibling to another
Your post really shows that you love your sister and were there for her when she needed you most!!! Really well done and I hope that the people around you can appreciate that a little!
From my experience it's really difficult to accept other care-giving methods besides your own... You've developed a certain routine and find it hard to see that others do it differently and there are people that are much more conscientious and committed in their ways than others.
In my case, we don't have any other carers, but I just notice some things with my brother's friends or our siblings when they come by. Most importantly, you have to accept their own ways of doing stuff, knowing that they don't do anything with bad intentions. And I hope that your sister's husband doesn't act that way out of malice but only because he's still being abit clumsy!!!! So sometimes we just need to let go of that control and acknowledge that each person has their own ways of caring. Maybe in your sister's husband's case, he's still learning and finding out how to deal with everything and how to provide good care. Some are better and faster learners than others. Give him a little more time, and hopefully he can improve his care. But your sister also clearly needs to say when he doesn't do stuff right so that he can do better next time. Good luck!!!!

[my-sister]

Hi Tessa. Nice to meet you. When was your brother injured & how? How is he doing now?
Thank you for your encouraging advice. I recognize that we are not all the same. I guess my nerves are on edge since the day of the fall. Our lives changed in an instant. Everything that we knew about life became instantly different. My reaction to this trauma is to throw myself into caring for her to the ultimate degree. I recognize that in a way ~ my reaction helps me to balance out the helplessness that we have all felt since the day of the injury.
I'm also trying to process my thoughts/feelings/attitude regarding the accident. My sister's husband (the now clumsy caregiver) ~ was the person who put the ladder up and (THOUGHT) THAT HE LOCKED IT. But it WASN'T LOCKED and when my sister got 15 feet up ~ it slipped and she fell
There were visual cues that would have TOLD HIM that the ladder wasn't locked. (like ~ just LOOKING AT THE LOCKING MECHANISM, VISUALLY INSPECTING IT BEFORE USE) AND THE RUNGS WERE OFFSET. The ladder was STICKING IN AN UNLOCKED POSITION. So ~ this is making me ultra sensitive to how ATTENTIVE TO DETAIL MY SISTER'S HUSBAND IS WHEN HE IS CARING FOR HER (now).

Since my sister got home, her husband has had minimal time with her. He uses 3rd shift and lack of sleep as an excuse for not putting in a decent amount of time in HELPING. But his time management STINKS ~ and when he has opportunity to sleep he sucks down coffee shots and then CAN'T SLEEP and then says he's unable to because he's just too tired.

Meanwhile, my mother and I pitch right in... despite the fatigue. we take turns on nights for turning her every two hours...

My husband made up a schedule of care to help us be a TEAM. That is our goal. That everyone gets to have some relaxation time and feel confident that my sister is well cared for in the interim. I feel perplexed that we had to pin my sister's husband down with a written schedule, in order to get better participation from him.

I'm so heartbroken for my sister. She's taken the injury as well as anyone could... She has her down days... but she's mostly a trooper...

The unknowing is difficult. Will she regain, won't she regain? It has affected me to the CORE.

Tessa, you said that he take care of your brother all by yourself? No personal assistant???

We are trying to get my sister a shower chair ASAP!!! After that ~ WE NEED A VAN THAT CAN LOCK DOWN A WHEEL CHAIR!!! My sister wants to GO OUT INTO THE COMMUNITY SO BADLY! SHE WANTS TO GET HER HAIR DONE (HOSPITAL CREATED SEVERE DRY SCALP PROBLEM)... SHE JUST WANTS TO HAVE SOMETHING BACK IN THE WAY OF MOBILITY... SO WE KEEP CHUGGING ALONG ONE DAY AT A TIME.... WE ARE ALSO WAITING FOR THE BENEFIT OF A PERSONAL ASSISTANT TO BE APPROVED AND ARE HOPEFUL TO UTILIZE THAT PERSON FOR HELPING MY SISTER TO TURN AT NIGHT SO THAT WE CAN BE FRESH FOR THE DAY TIME.

I'm glad I found this site... I've really wanted a place to type out my thoughts/feelings... it's so cathartic...

TAKE CARE EVERYONE...

[mcferguson]

You are doing a great job caring for your sister and I can tell you from experience that your sister needs someone that pays attention to every detail. After my accident, I was occupied with making it from day to day and I missed some details that my wife paid attention to and I am very thankfull she did. With an SCI an ouce of prevention is definately worth a couple pounds of cure.

One device that really helped us out was an alternating pressure mattress, so I didn't have to wake up every two hours to turn. I have an Effect 5000 and it cost about $500. It overlays the bed and is portable.

God Bless.

[guido]

Hi - well done for being there for your sister. The early days post injury are pretty shocking and having unconditional support while you're getting through that patch REALLY makes a difference.

As you and your sister go on, you'll realise how much you grow and develop post SCI and how there seem to be progressive stages of getting on with your lives. This is a great place to hear people's own stories, opinion and advice, as new concerns, joys & anxieties come up.

Please consider a couple of things: the relationship you have with your sister is COMPLETELY different from the one her husband has with her. You can't compare them. He is having to come to terms with a completely different set of issues to you, and they're BIG issues (read through past threads on relationships). Adjustment takes time, sometimes lots of it. As you'll read in many other threads, some partners can't handle it and leave, and some just suck it up and take care of it all.

Likelihood is, the more you try to control the situation and constantly judge your brother in law, the worse the situation will become. Your sister may be C5 injury, but she still has her own mind. As she progresses with her life, she must learn to take control more. That means different things to different people. But her relationship with her husband is something she must sort.

I'm not trying to state any rights or wrongs. It's more complicated than that. And what do I know of your situation anyway? But I would like you to breathe deeply, step back from the coal face and consider what must be going through others minds also. Answers come slowly, and sometimes we have to dare to relinquish control in order to get a fuller picture.

[tessa]

my-sister, on Feb 17 2010, 02:07 PM, said:

Hi Tessa. Nice to meet you. When was your brother injured & how? How is he doing now?
Thank you for your encouraging advice. I recognize that we are not all the same. I guess my nerves are on edge since the day of the fall. Our lives changed in an instant. Everything that we knew about life became instantly different. My reaction to this trauma is to throw myself into caring for her to the ultimate degree. I recognize that in a way ~ my reaction helps me to balance out the helplessness that we have all felt since the day of the injury.
I'm also trying to process my thoughts/feelings/attitude regarding the accident. My sister's husband (the now clumsy caregiver) ~ was the person who put the ladder up and (THOUGHT) THAT HE LOCKED IT. But it WASN'T LOCKED and when my sister got 15 feet up ~ it slipped and she fell
There were visual cues that would have TOLD HIM that the ladder wasn't locked. (like ~ just LOOKING AT THE LOCKING MECHANISM, VISUALLY INSPECTING IT BEFORE USE) AND THE RUNGS WERE OFFSET. The ladder was STICKING IN AN UNLOCKED POSITION. So ~ this is making me ultra sensitive to how ATTENTIVE TO DETAIL MY SISTER'S HUSBAND IS WHEN HE IS CARING FOR HER (now).

Since my sister got home, her husband has had minimal time with her. He uses 3rd shift and lack of sleep as an excuse for not putting in a decent amount of time in HELPING. But his time management STINKS ~ and when he has opportunity to sleep he sucks down coffee shots and then CAN'T SLEEP and then says he's unable to because he's just too tired.

Meanwhile, my mother and I pitch right in... despite the fatigue. we take turns on nights for turning her every two hours...

My husband made up a schedule of care to help us be a TEAM. That is our goal. That everyone gets to have some relaxation time and feel confident that my sister is well cared for in the interim. I feel perplexed that we had to pin my sister's husband down with a written schedule, in order to get better participation from him.

I'm so heartbroken for my sister. She's taken the injury as well as anyone could... She has her down days... but she's mostly a trooper...

The unknowing is difficult. Will she regain, won't she regain? It has affected me to the CORE.

Tessa, you said that he take care of your brother all by yourself? No personal assistant???

We are trying to get my sister a shower chair ASAP!!! After that ~ WE NEED A VAN THAT CAN LOCK DOWN A WHEEL CHAIR!!! My sister wants to GO OUT INTO THE COMMUNITY SO BADLY! SHE WANTS TO GET HER HAIR DONE (HOSPITAL CREATED SEVERE DRY SCALP PROBLEM)... SHE JUST WANTS TO HAVE SOMETHING BACK IN THE WAY OF MOBILITY... SO WE KEEP CHUGGING ALONG ONE DAY AT A TIME.... WE ARE ALSO WAITING FOR THE BENEFIT OF A PERSONAL ASSISTANT TO BE APPROVED AND ARE HOPEFUL TO UTILIZE THAT PERSON FOR HELPING MY SISTER TO TURN AT NIGHT SO THAT WE CAN BE FRESH FOR THE DAY TIME.

I'm glad I found this site... I've really wanted a place to type out my thoughts/feelings... it's so cathartic...

TAKE CARE EVERYONE...

Hello My-Sister,
I can really feel with you and hopefully your sister will become stronger and stronger with time. The first few months were very difficult for us too. We were really lucky that my brother could stay in rehab for around 6 months so when he came home he had already regained a lot of strength. It's been now 2.5 years and things got a lot easier after the first year or so. I also had a really hard time coping with my brother's injury at first and can really understand your situation. The beginning is really hard but time will help you and your sister to adjust to this new life. Also, don't be hard on yourself and try to take little babysteps, each one at a time ;) Your sister will need a lot of care at first but she will regain some independency.
I do take care of my brother alone but our mother helps me with the laundry/house-keeping once or twice a month. And our father did all the insurance issues because I couldn't have done any of that so I do get help!!
As far as the turning goes: try to put some velcro strips (or slings) at the left and right side of the bed so she can try to turn herself at night.
Good luck to your and your sister!!!
tessa

[my-sister]

Thank you all for your time and for your thoughts... Hopefully I can remember to respond to each person... I'm sorta keeping all of the replies in mind and going from there...

I really like the gentle reminder to drop the judgment... well said, and necessary... funny thing ~ since the accident ~ I've been praying for HELP to LET GO OF THE JUDGMENT that I have been experiencing... and to recognize the strength and goodness in my sister's husband.

I would be highly impressed with ACTIONS OVER WORDS. All sorts of words can be said ~ but when it comes right down to it ~ words are often empty... it's the action that counts.

I like that someone reminded me that the only thing constant about life is that it's constantly changing... and this too, shall pass.

Today ~ my sister spoke to me about her own feelings regarding her husband & the lack of time spent with her... and she plans to TALK IT OUT. I am so hopeful for her... and I said I'm behind her in whatever way she may need... including ~ stepping back and allowing for THEIR RELATIONSHIP TO BE WHAT IT MAY BE. I don't want to make the mistake of insinuating myself into their adult relationship... MY SISTER IS NOT POWERLESS! BUT SHE IS VULNERABLE... AND I'M READY IN WHATEVER WAY SHE MAY NEED...

I can encourage, I can discourage, I can coach, I can step back...

I recognize the options... I just needed a place to VENT.

It would be nice if I could CONTROL EVERYTHING... BUT THAT'S UNREALISTIC... BUT IT SURE FEELS GOOD TO TYPE IT OUT ;)

Regarding the overlay mattress... WE HAVE THAT!!! But nobody ever said that my sister would not need to be turned because of using that!! I am OK with turning my sister... I WANT TO KEEP HER SKIN BEAUTIFUL AND HEALTHY!!! AND I'M HOPEFUL THAT SHE WILL REGAIN STRENGTH TO TURN HERSELF THAT WOULD BE WONDERFUL...

I'm so proud of my sister... she was so amazingly TO THE POINT today... regarding her feelings and needs...

I HOPE SO MUCH THAT SHE IS SUCCESSFUL WHEN SHE COMMUNICATES WITH HER HUSBAND.

I think when I get a chance ~ I will try to read more threads here... I appreciate the suggestion

Does anyone do any yoga positions/stretches when they do range of motion????

I have incorporated 2 spine stretches in my sister's morning range of motion... and she can FEEL THE STRETCH IN HER LOWER SPINE

1 is laying flat on back, both knees toward the chest (i place her in this pose and hold it for about 20/30 seconds)... the other is knees to one side, arms toward the other side (meaning one arm is gently resting across her belly, hand toward hip, face turned toward opposite direction of knees...

Perhaps someone knows of a thread regarding yoga stretches and quadrapalegia... and/or ~ i could post that as a NEW TOPIC (?)

LOVE AND UNDERSTANDING BEING SENT OUT TO ALL... (INCLUDING TO MY SISTER'S HUSBAND) ;)

TAKE CARE EVERYONE!

[ray_m]

Wow, you are amazing!

My sister stepped in for me, much in the same manner that you have for your sister (although I don't have the spouse issues to deal with). It is an awesome (and even overwhelming) blessing to be the recipient of such a gift as you have bestowed upon her.

I can't provide any input on yoga but my own experience is that stretching and any kind of exercise that can be done has a dramatic impact on spasticity. I've also found that massage also helps a great deal with my own mobility and nerve pain.

Good luck to all of you!

[my-sister]

Thank you Ray. Speaking of movement and how much it HELPS... I thought I'd share an experience that we had with our small dog about 2 years ago... our small dog spontaneously blew a disc and was paralyzed in the hind-quarters... my husband took him to the vet and they said they couldn't help him and advised to put the dog down my husband refused and brought the dog home on steroids... I worked with our dog for 3 weeks... every hour ~ I moved him... massaged him... took him out and put him in the position to poop & pee... I made what I called an "a$$ strap" (which his hind legs went thru and the underside supported his belly, while i held him up in a fully standing position). I would walk the dog around with this... One morning, while fully set up with our a$$ strap, I asked my husband to call the dog from down the hall... This was perfectly timed, as it is the most exciting time for our dog, to greet my husband as he is waking up and coming out of the bed room... Our dog charged down the hall and I kept pace with him... the last three steps to my husband ~ OUR DOG'S HIND LEGS STARTED MOVING! IT WAS LIKE HE FORGOT HE WAS PARALYZED IN THE EXCITEMENT... I continued to move and massage him every hour... and he continued to regain his useful mobility For weeks he sorta walked, stumbled, fell, walked again... his tail came back... at first it was ~ swish, swish, droop... then swish, swish, swish, droop...

NOW ~ OUR DOG, WALKS, RUNS, JUMPS, WAGS HIS TAIL... HE DOESN'T HAVE AS MUCH FEELING IN HIS HIND TOES... BUT HE IS MOBILE HE SOMETIMES SEEMS A LITTLE STIFF...

Weird... cuz when my husband brought the dog home on the first day... I WAS OVERWHELMED!! HOW AM I SUPPOSED TO TAKE CARE OF A PARALYZED DOG???? THAT'S WHAT I THOUGHT... WHY ARE YOU ASKING THIS OF ME??? HOW WILL THIS CHANGE OUR LIVES?????

BUT THERE MUST HAVE BEEN (SOME REASON) WHY WE WERE BLESSED WITH THAT LESSON AND THAT CHALLENGE...

I FOLLOWED MY GUT AND MY HEART.... AND GAVE THAT EXTRA EFFORT...

THAT'S WHAT I'VE BEEN FOLLOWING SINCE THE MOMENT MY SISTER WAS INJURED... AND I PRAY THAT THE EFFORT WILL BE AS SUCCESSFUL AS IT WAS WITH OUR DOG...

BUT I KNOW THAT LIFE IS UNPREDICTABLE... AND THERE IS A CHANCE THAT MY SISTER WILL NOT HAVE AS GOOD OF AN OUTCOME... AND STILL ~ I KNOW THAT SHE WILL HAVE A FRUITFUL LIFE. THERE IS POTENTIAL FOR GREAT AND GOOD THINGS... WHETHER IN A WHEELCHAIR OR NOT! HER LIFE IS MEANINGFUL! SHE HAS MOVED THE COMMUNITY TO PRAYER... SHE HAS MOVED HEARTS TO GIVE LOVE AND COMFORT... SHE HAS OPENED UP HER HEART (WHICH WAS WELL GUARDED) TO (RECEIVE) LOVE.

WE HAVE MET WONDERFUL PEOPLE THRU-OUT THIS PROCESS...

WHEN MY SISTER WAS STILL IN SICU... STRANGERS WOULD COME TO ME, OFFERING AN EAR, A HUG, A REASSURANCE... MY EVERY NEED WAS PROVIDED FOR... AND I THANK GOD FOR THAT.

SINCE MY SISTERS INJURY... WE HAVE LEARNED OUR STRENGTH, WE HAVE DEEPENED OUR FAITH, WE HAVE LEARNED HOW MUCH WE BOTH TRULY VALUE OUR LIFE (IT WAS QUESTIONABLE BEFORE THE INJURY).

MY SISTER'S INJURY HAS TAUGHT ME TO ALWAYS GIVE MY BEST EFFORT, LOVE WITH AN OPEN HEART, STAY CALM AND TRUST IN A HIGHER POWER, AND BE A STICKER! STICK WITH IT! BE FAITHFUL!

I COUNT MYSELF LUCKY AS CAN BE TO HAVE MY SISTER... I KNOW THERE IS A PURPOSE FOR ALL OF THIS... I WISH THERE WASN'T SUFFERING... BUT THEN ~ HOW WOULD WE GROW? HOW WOULD OUR FAITH DEEPEN? OUR WOULD WE SHOW OUR LOVE, GIVE OUR LOVE...

well... that's my personal HEART... my life experience... my views on the meaning of this life and challenge...

thanks to this site for the place and the space

[gordonr]

Sister,

I too applaud you on your care for your sibling.

But you might look into getting your keyboard fixed. The "Caps Lock" seems to be sticking.

Best Regards,

Gordon

[my-sister]

awww... that's what makes me sad... i'm not in need of affirmation for a job well done. i don't even see it as a job. my sister has experienced the physical and emotional trauma... i experienced the emotional trauma and the physical trauma in the sense that i left my husband and kids for 3 months and i learned medical things that i never thought that i had the stomach for. and during that time the physical trauma for me ~ was functioning and caring while under stress, away from all of our family, sometimes little sleep (when she was on the vent)... extreme loss of appetite...

i'm embarrassed to receive compliments on "MY JOB". my job is NOTHING ~ compared to my sisters.

it hurts me that you found fault in the way i type. CAPS just shows excitement to me...

it was exciting when my dog walked again. and it will be exciting if my sister gets to walk again... as well as anyone here who has hope.

my silly a$$ sling ended up being exactly what they now use to help people regain... it's called LOCOMOTOR therapy. THAT'S PRETTY EXCITING STUFF! and my sister had the opportunity to go on the locomotor 3 times before she left rehab.

i physically can't move my sister every hour... like i did my dog... i recognize the difference. i could pick up my dog. i had little to move or massage.

i just chose to look at it that God taught me something in that experience. i learned HOPE. and that is helping me to bring MORE to my sister.

i was gonna post about managing my own intensity of care today... as i am the type of person who would DIE TRYING. i don't personally have good measures inside of myself for BALANCING IN (MY OWN NEEDS).

but i think perhaps ~ this support group is not the best match for me. maybe i can find an IN PERSON support group, as i have never had the opportunity to participate in the family group support at the hospital, because i would never leave my sister on those nights and it always was held on shower night.

HERE'S SOME CAPS LOCKS FOR YA...

WITH MY WHOLE HEART I WANT MY SISTER TO RECOVER!

WITH MY WHOLE HEART I NEVER KNEW HOW MANY PEOPLE WERE IMPACTED BY SPINAL CORD INJURY AND I'M DEEPLY SADDENED, BUT HOPEFUL FOR RECOVERY!

THIS TRAUMA MAKES ME A LITTLE AFRAID OF WHAT LIFE IS ~ HOW HARD IT COULD BE... YET I'M AMAZED AT THE STRENGTH OF THE PEOPLE WHO MAKE THEIR WAY THRU IT.

I APPLAUD EVERYONE WHO IS GETTING THRU SPINAL CORD INJURY... BUT I WOULDN'T THINK THAT YOU'D WANT TO HEAR HOW MUCH I'M APPLAUDING YOU... IT'S GRATING.

I'D HAVE PREFERRED TO SHARE UNDERSTANDING AND (BE HUMAN WITH YOU).

peace out.

[Apparelyzed]

Hi my-sister,

Gordon was only letting you know about Caps Lock, because it makes your posts difficult to read.

There's no need to leave over such a trivial reason, let's face it, you have bigger issues in your life with your sister at the moment to let such a small comment get to you.

Keep the bigger picture in mind here.

Regards

Simon.

[qbounce]

hi my-sister,
After joining this forum I actually learned how to get a good nights sleep from the good people on this site.

One tip was that I could stay comfortably on one side for up to 4 hours before turning (my hospital had me turned every 3 hours). This was already a revelation for me in that, for an 8 hour sleep I need only wake up once during the night to turn myself!

Also, due to all the pillows surrounding my body, I found it nearly impossible to turn and then reposition those darn pillows against my back and legs. As I found out, many others here who are 20-30 years post injury, only use one pillow for the head . . . . that's it.

Oh, and I'm on a regular matress with a 2" memmory foam top. I couldn't sleep with the humming of that air matress motor, or the rotating air moving beneath me.

Time really does make a difference for all these changes to occur. Well, that and the assurance to accept that one doesn't need ALL of these new and foreign rules to live a safe and comfortable life. I know she'll need time to figure out what works best for her.

Edit to add:

Please don't go yet. There are so many differing personalities here, each sharing and enriching this forum with their unique stories, and ever differing view points.

Thank you for adding to the mix!!!

Edited by qbounce, 20 February 2010 - 08:35 PM.

[gordonr]

qbounce, on Feb 20 2010, 08:15 PM, said:

Please don't go yet. There are so many differing personalities here, each sharing and enriching this forum with their unique stories, and ever differing view points.

Thank you for adding to the mix!!!

I second that.

seriously:

agreement (including agreement of personalites) is not all that it is cracked up to be

diversity is even better

-G

[my-sister]

Gee. I guess I'm more sensitive than I realized. I stubbornly avoided coming back for the last couple of days due to my raw state of being.

I apologize for being overly sensitive.

I didn't think about how my sister's care would evolve in such a way as qbounce described. i'm hopeful for those evolutions to occur in my sister's care.

I am struggling with ACCEPTING the current state of my sister.

Much of my INTENSITY is due to NOT ACCEPTING her current state. In that, my care efforts are highly focused on (I WILL BRING YOU THRU THIS!)

I self talk ~ and try to remind myself that I cannot control the outcome. And my efforts are not IN VANE.

The reality of a spinal cord injury is SO BIG AND COMPLETELY UNPREDICTABLE.

It makes me furious sometimes. Furious that reality can be so cruel.

I offset the sense of anger & lack of control ~ by focusing on the most positive things I can and while (with her) I am completely IN THE NOW. This helps me and MY SISTER to ENJOY THE MOMENT and find our joy. And we really do. We laugh so much.

Before my sister's injury ~ we both had serious problems with depression... had often considered suicide and couldn't find our joy or gratitude for BEING.

Now, we are both so grateful and LOVE OUR LIVES AND VALUE OUR LIVES AND LOVE OURSELVES AND LOVE THE PEOPLE AROUND US.

This experience is bringing different challenges though... Like just the physical ability the GET THRU IT. Whether it be on my sister's side (of enduring this huge change to her body and function) or on my side of being POWERLESS TO CHANGE IT, and faced with choices of basically abandoning my role in life (mother, wife) and caring for my sister.

To me ~ it doesn't seem like a choice. MY SISTER NEEDS ME (ESPECIALLY NOW)! Yet, life doesn't stop... and my committed relationships become neglected as a result. Which makes me a very torn individual.

I was so hopeful that my sister's husband would be a BIGGER PART of the team. In his absence, I find myself filling in the weak spots. I don't want her to be minus everything she deserves. She deserves, love, affection, attention, understanding, support, a competent care giver.

Idealistically, that would be provide for thru a group of people, but it's not working that way.

My husband wants me to find a better balance and give myself some ME TIME and US TIME. But all I can really see is MY SISTER'S NEED and all I really want is to MAKE IT THE BEST IT CAN BE IN WHATEVER WAY I CAN UNTIL I KNOW THAT SHE IS (OK).

I'm so surprised at how deeply this has personally impacted me. I am her sister. I guess I knew from the moment she opened her eyes in the SICU that she didn't even have to say a word (and she couldn't) but ~ i knew at that moment ~ that I could read her thoughts, needs ~ like nobody else in the room. And I did. I haven't stopped.

And I sorta applied the same thing that I did with our dog... I took that moment of inner-KNOWING... and acted upon it.

My heart says that I'm not done being a very big part of my sister's every day. But I'm afraid that I will be SPENT before I know what hit me.

I'm striving to meet my husband's needs, my children's needs, my own needs.

I'm reminding myself daily to PACE MYSELF. Let go of my perfectionist behaviors & beliefs.

Right now, nothing satisfies me more ~ than being there for my sister. But I have to remember MYSELF and MY COMMITMENTS TO MY HUSBAND AND CHILDREN.

I'm not quite sure how to do that.

I guess it's not the physical care that is the hard thing for me. It's the emotional balance that is most challenging to me. That ~ and setting my own pace so that I can be a sticker for the duration of this challenge... a sticker who brings the appropriate care at the appropriate time and with the highest and best energy as humanly possible.

I guess also, I struggle with the CHANGE in my life. It's scary to learn this new way of being. To learn how to simply travel with my sister... To get a van and start LIVING OUR LIVES AGAIN in the community.

I have almost a CONSTANT SENSE OF PROTECTIVENESS FOR MY SISTER. Everything I do surrounding her care has been an effort to keep her safe. And is another thing that I can identify about myself ~ that tells me ~ I still haven't fully absorbed the reality of her injury.

My efforts are sort of in vane in this regard... because ~ I really wanted to KEEP HER SAFE ON THE DAY OF HER FALL. AND I COULDN'T BECAUSE I WASN'T THERE. AND I DIDN'T, BECAUSE THAT TIME HAS PASSED. AND NOW I'M LIKE A MOTHER LION GUARDING HER BABY...

I want to recognize my sister's own abilities and not SMOTHER HER WITH MY OWN IMBALANCES.

At least I am very self aware and I'll just keep doing the best that I can personally do. I'll keep trying to balance myself, balance the care needs, empower my sister, rather than steal her power away...

I would just like to add one more thing... I am a person who like very much to type out my feelings and thoughts... and I can go on and on about what I am thinking and feeling... I find this to be very relaxing and cathartic... I don't necessarily need anyone to FIX anything for me. I would like to identify with others who may have similar or opposite views, thoughts, experiences. I don't need my ego stroked and I'm not looking for critique (i'm a serious perfectionist ~ I critique the crap outta myself ~ NONSTOP)...

All I really want is friendship, understanding, open space to allow my thoughts and feelings to manifest into written form so that I can release them and not carry them around with me and get sick by them.

I think I have to learn a better openness to other's experiences who are further along in their process of recovery or care-giving. And other's experiences will help me to get thru the various stages that we have yet to encounter.

First though ~ I gotta get some of this emotion out. We've been in survival mode since day one... I haven't had time to process these changes.

All I know is that this huge thing happened, there was a call to duty and I answered the call. It was so overwhelming that I was forced to look to God... As this wasn't a practice... God was an after thought... And now ~ God is more like ~ the only thing that I know can help to sustain me & my sister.

There are so many various ways that this experience has CHANGED ME. And the change is still coming... There is still more to be worked thru...

HOW DAUNTING!

I guess also ~ I need to allow myself to be WHO I AM ~ here at this support group. And believe that I make a difference in some way. And that my personality adds flavor to a group of unique personalities

It's my goal over the next several weeks to empty out a little more... to allow for the space of LETTING NEW AND DIFFERENT INFORMATION (IN).

Thanks to all for their patience with me and understanding and compassion.

[qbounce]

Now your using this site for what it was intended . . . . . to vent!! haha

Everything you said rings true from my loved ones who were there for me, especially my Dad. He lived the closest, and his retirement date was coming due, basically when ever he was ready to leave his position.

I was fortunate enough to have him step up to the plate and help me when I really needed someone most. I'm sure it was a no brainer for him to take his retirement directly after my SCI. Hell, maybe he NEEDED that push! Sounds like HE owes ME a thank you, otherwise he may still be working this very day.

Obviously your sister needs you right now. Only you can tell how best to balance your home life versus the time spent at your sisters side. But if I may offer up a word on this matter. Please give her some space during her therapy (when she's scheduled) to allow her and her therapist/s to focus solely on the tasks put before her. That's not to say that you should never go to her therapy sessions, because I know family is needed when for training in her care.

In my experience, I appreciated the oportunity to begin working on doing things without my loved ones making me feel self conscious in my new body. So, when they would visit after my therapy sessions were done, I would tell them what I was re-learning to do, and I knew it gave them a prescious break to do the things that they needed so I wouldn't feel like such a burden on them and their lives.

Now I know the term "burden" is only how I perceived myself to be. But it's kinda hard to be viewed as otherwise when their lives were spent at the hospital sitting in a blank walled room with me, instead of out there in the real world living their REGULAR lives.

Glad you decided to hang out here more. Introduce your sister to the site when she's up to it, okay? Take care of yourself.

[4_my_lil_sis]

my-sister, on 23 February 2010 - 02:49 PM, said:

Gee. I guess I'm more sensitive than I realized. I stubbornly avoided coming back for the last couple of days due to my raw state of being.

I apologize for being overly sensitive.

I didn't think about how my sister's care would evolve in such a way as qbounce described. i'm hopeful for those evolutions to occur in my sister's care.

I am struggling with ACCEPTING the current state of my sister.

Much of my INTENSITY is due to NOT ACCEPTING her current state. In that, my care efforts are highly focused on (I WILL BRING YOU THRU THIS!)

I self talk ~ and try to remind myself that I cannot control the outcome. And my efforts are not IN VANE.

The reality of a spinal cord injury is SO BIG AND COMPLETELY UNPREDICTABLE.

It makes me furious sometimes. Furious that reality can be so cruel.

I offset the sense of anger & lack of control ~ by focusing on the most positive things I can and while (with her) I am completely IN THE NOW. This helps me and MY SISTER to ENJOY THE MOMENT and find our joy. And we really do. We laugh so much.

Before my sister's injury ~ we both had serious problems with depression... had often considered suicide and couldn't find our joy or gratitude for BEING.

Now, we are both so grateful and LOVE OUR LIVES AND VALUE OUR LIVES AND LOVE OURSELVES AND LOVE THE PEOPLE AROUND US.

This experience is bringing different challenges though... Like just the physical ability the GET THRU IT. Whether it be on my sister's side (of enduring this huge change to her body and function) or on my side of being POWERLESS TO CHANGE IT, and faced with choices of basically abandoning my role in life (mother, wife) and caring for my sister.

To me ~ it doesn't seem like a choice. MY SISTER NEEDS ME (ESPECIALLY NOW)! Yet, life doesn't stop... and my committed relationships become neglected as a result. Which makes me a very torn individual.

I was so hopeful that my sister's husband would be a BIGGER PART of the team. In his absence, I find myself filling in the weak spots. I don't want her to be minus everything she deserves. She deserves, love, affection, attention, understanding, support, a competent care giver.

Idealistically, that would be provide for thru a group of people, but it's not working that way.

My husband wants me to find a better balance and give myself some ME TIME and US TIME. But all I can really see is MY SISTER'S NEED and all I really want is to MAKE IT THE BEST IT CAN BE IN WHATEVER WAY I CAN UNTIL I KNOW THAT SHE IS (OK).

I'm so surprised at how deeply this has personally impacted me. I am her sister. I guess I knew from the moment she opened her eyes in the SICU that she didn't even have to say a word (and she couldn't) but ~ i knew at that moment ~ that I could read her thoughts, needs ~ like nobody else in the room. And I did. I haven't stopped.

And I sorta applied the same thing that I did with our dog... I took that moment of inner-KNOWING... and acted upon it.

My heart says that I'm not done being a very big part of my sister's every day. But I'm afraid that I will be SPENT before I know what hit me.

I'm striving to meet my husband's needs, my children's needs, my own needs.

I'm reminding myself daily to PACE MYSELF. Let go of my perfectionist behaviors & beliefs.

Right now, nothing satisfies me more ~ than being there for my sister. But I have to remember MYSELF and MY COMMITMENTS TO MY HUSBAND AND CHILDREN.

I'm not quite sure how to do that.

I guess it's not the physical care that is the hard thing for me. It's the emotional balance that is most challenging to me. That ~ and setting my own pace so that I can be a sticker for the duration of this challenge... a sticker who brings the appropriate care at the appropriate time and with the highest and best energy as humanly possible.

I guess also, I struggle with the CHANGE in my life. It's scary to learn this new way of being. To learn how to simply travel with my sister... To get a van and start LIVING OUR LIVES AGAIN in the community.

I have almost a CONSTANT SENSE OF PROTECTIVENESS FOR MY SISTER. Everything I do surrounding her care has been an effort to keep her safe. And is another thing that I can identify about myself ~ that tells me ~ I still haven't fully absorbed the reality of her injury.

My efforts are sort of in vane in this regard... because ~ I really wanted to KEEP HER SAFE ON THE DAY OF HER FALL. AND I COULDN'T BECAUSE I WASN'T THERE. AND I DIDN'T, BECAUSE THAT TIME HAS PASSED. AND NOW I'M LIKE A MOTHER LION GUARDING HER BABY...

I want to recognize my sister's own abilities and not SMOTHER HER WITH MY OWN IMBALANCES.

At least I am very self aware and I'll just keep doing the best that I can personally do. I'll keep trying to balance myself, balance the care needs, empower my sister, rather than steal her power away...

I would just like to add one more thing... I am a person who like very much to type out my feelings and thoughts... and I can go on and on about what I am thinking and feeling... I find this to be very relaxing and cathartic... I don't necessarily need anyone to FIX anything for me. I would like to identify with others who may have similar or opposite views, thoughts, experiences. I don't need my ego stroked and I'm not looking for critique (i'm a serious perfectionist ~ I critique the crap outta myself ~ NONSTOP)...

All I really want is friendship, understanding, open space to allow my thoughts and feelings to manifest into written form so that I can release them and not carry them around with me and get sick by them.

I think I have to learn a better openness to other's experiences who are further along in their process of recovery or care-giving. And other's experiences will help me to get thru the various stages that we have yet to encounter.

First though ~ I gotta get some of this emotion out. We've been in survival mode since day one... I haven't had time to process these changes.

All I know is that this huge thing happened, there was a call to duty and I answered the call. It was so overwhelming that I was forced to look to God... As this wasn't a practice... God was an after thought... And now ~ God is more like ~ the only thing that I know can help to sustain me & my sister.

There are so many various ways that this experience has CHANGED ME. And the change is still coming... There is still more to be worked thru...

HOW DAUNTING!

I guess also ~ I need to allow myself to be WHO I AM ~ here at this support group. And believe that I make a difference in some way. And that my personality adds flavor to a group of unique personalities

It's my goal over the next several weeks to empty out a little more... to allow for the space of LETTING NEW AND DIFFERENT INFORMATION (IN).

Thanks to all for their patience with me and understanding and compassion.

Oh My Goodness!! I couldn't have said this better myself! LOL!! My Sister is in NEURO ICU for almost a month now & this is EXACTLY how i feel about her! Must be a sister thing! When you posted about when she opened her eyes & you knew what she wanted to say, yes!!! I was the only one thst knew what she wanted when she wanted it & no one in the room could figure it out! She also has a trache & for a little over a week, she only mouthed words & again i was the only one who knew what she said, so everyone that visited had to visit with me too! lol! Anyways, never did i think this would impacted me as much either but shes my whole life now along with balancing my husband & children!
Just wanted to say you are not the only one who feels this way & we will get through it!! God bless you!!!!

[my-sister]

Hi, 4mylilsis!

thank you for identifying with me.

how are you and your sister and family?

[Susie_nkc]

Communication is key!
Talk to your brother in law about being more careful... take the time to show him the rights and wrongs.
Having help is a blessing... I have been caring for my now ex husband more on that off... for 16 years... and he is at the same level as your sister.

One time our son was with his dad... dad starts choking... our son did nothing.
he had a look of... good! on his face as he did nothing.
I did step in and handled the situation.

But that situation pointed out to me... the resentment of having to take care of dad. That we, take as okay this has to be done.
We do it.

Not everyone can... Not everyone has it in them to do as we do.
So with having that understanding... I have found if I want something done right! I do it my self.

Your sister will go through allot of changes. and It kinda sounds as if he encourages her to do more. but doesn't realize the effects... of things back firing... like her twisting her foot.

the tension is probably high... due to the new... of all this. That doesn't get better.
Being a caregiver... YOU have to make it better.
Give it way more understanding that you normally would.
Every day... is a new day.
Hugs to you.
Susie

[my-sister]

Susie_nkc, on 11 August 2010 - 05:23 PM, said:

Communication is key!
Talk to your brother in law about being more careful... take the time to show him the rights and wrongs.
Having help is a blessing... I have been caring for my now ex husband more on that off... for 16 years... and he is at the same level as your sister.

One time our son was with his dad... dad starts choking... our son did nothing.
he had a look of... good! on his face as he did nothing.
I did step in and handled the situation.

But that situation pointed out to me... the resentment of having to take care of dad. That we, take as okay this has to be done.
We do it.

Not everyone can... Not everyone has it in them to do as we do.
So with having that understanding... I have found if I want something done right! I do it my self.

Your sister will go through allot of changes. and It kinda sounds as if he encourages her to do more. but doesn't realize the effects... of things back firing... like her twisting her foot.

the tension is probably high... due to the new... of all this. That doesn't get better.
Being a caregiver... YOU have to make it better.
Give it way more understanding that you normally would.
Every day... is a new day.
Hugs to you.
Susie

Thanks for sharing your thoughts and your experiences with me, Susie!

[stillgotswag]

Your a hell of a bro and person...stay strong.

[qbounce]

4_my_lil_sis, on 08 July 2010 - 03:35 AM, said:

Oh My Goodness!! I couldn't have said this better myself! LOL!! My Sister is in NEURO ICU for almost a month now & this is EXACTLY how i feel about her! Must be a sister thing! When you posted about when she opened her eyes & you knew what she wanted to say, yes!!! I was the only one thst knew what she wanted when she wanted it & no one in the room could figure it out! She also has a trache & for a little over a week, she only mouthed words & again i was the only one who knew what she said, so everyone that visited had to visit with me too! lol! Anyways, never did i think this would impacted me as much either but shes my whole life now along with balancing my husband & children!
Just wanted to say you are not the only one who feels this way & we will get through it!! God bless you!!!!

What the . . . . what IS that bothersome liquid swelling in my eye?? A tear, is that a flippin' tear??? Man, now you did it. See little sis, that's why you remained on here.

my-sister, how are your sister and brother in law doing? I know he's not perfect, but has he been helping with your sisters care? How about an update??

Edited by qbounce, 15 August 2010 - 05:49 PM.

[my-sister]

Hi QBounce! Thanks for checkin' in on me
Well, my sister is doing fairly well. She's made some gains in her strength and coordination. She still has a really good attitude. Her husband is still sort of a minor contributor ~ but they have their own thing ~ and i have found it best to limit my interaction with my sister's husband.

We're just not on the same page at all...

My sister seems to be able to deal with that. Even though, I KNOW it hurts her that we are not a more united family.

Things are so much different now that i am in the home-care-giver role.

I miss all of the positive people who we had to interact with every day at the hospital.

The family just isn't very balanced I have my opinions about what my role should be, what my sister's husband's role should be... then ~ my mom sorta defends my b-i-l position ~ which puts more time and responsibility on me ~ and tears me farther away from my kids/husband.

We're all making it ok. But it's not very pleasant.

Although ~ between my sister and me... WE ARE GREAT! We laugh our a$$es off ~ DAILY! Sing, be silly...

I never tire of helping my sister... but i would like to figure out a way to have relief. So that I could go on vacation or do something with the kids or BE SICK...

this week ~ I got suddenly and violently ill with diverticulitis. This is outta left field. I'm average weight, 41... and i just up and get it! What i didn't realize is that my guts have been in a tight twist for months. I didn't even recognize the pain as pain anymore... i just kept pushing myself ~ because she needs me

So ~ Mom and I don't have any backups. And I help my mom every day of the week (i take weekends off). So ~ fortunately ~ i went over and helped ~ sick and all... but what if i needed emergency surgery or hospitalization??? We're not prepared!

My mom has this vibe about her ~ that doesn't really INVITE people into the home. So I'm sorta up against that. I've been hoping that my sister would think about someone who she might want to approach and ask to be her assistant ~ but she hasn't yet.

We just got the program approved a couple of weeks ago! At first they gave mom and i 27 hours to share per week & an agency would provide 21 hours.

But the agency that they set up to be our support ~ did not have anyone willing to work in our area, nor did they have any new respondents for the position.

Now the Govt. switched all of the hours to mom and i (48 hours)... and it's our responsibility to hire out and build the schedule.

We are pretty overwhelmed

I still have some serious bouts of grief/depression over the loss that my sister has endured. But i just sorta keep that to myself. When i'm with her ~ WE ARE IN THE MOMENT!

My mind does revisit the time of (what was) though...

Hard NOT TO go there.

Well ~ there's my update!

I'll have to fish around on this site ~ to get to know you, Qbounce. I'd like to ask you how you are doing... but i just realized ~ i've never had the time get around this site too much and get to know people and their stories... been too trapped in my own process & survival of...

[DiamondDave247]

my-sister, on 23 February 2010 - 02:49 PM, said:

...~ I need to allow myself to be WHO I AM ~ here at this support group. And believe that I make a difference in some way. And that my personality adds flavor to a group of unique personalities

...Thanks to all for their patience with me and understanding and compassion.

thank you for sharing...

[my-sister]

thank you diamonddave

hope your friend makes out ok... you hang in there too!

[qbounce]

My-sister, now THAT'S an update! Seriously though, you're not alone in this struggle to help the ones you love, and the imperfect balance that's hardest to attain in the first years post injury. I hope you find that balance soon, because it sounds like it's kinda eating you up inside.

Honestly, as much as you love your sister, maybe stepping back a little on her care will make more room for her husband to step in and help more. You really do need to take care of yourself for both, Mom and sister's sakes.

[my-sister]

haha qbounce! i'm wordy ;)
yep... have been pulling back some... we'll pull it all together at some point. we're doing well... i did make the mistake of harboring my feelings in my guts... but what are ya gonna do? can't go back and undo it...

right now ~ i've picked up yoga for myself... trying to be more attentive to my needs. and still be a supportive sis

hey! we got a surprise call from that attendant provider the other day ~ and they have FOUND SOMEONE for those 21 hours!

that's gonna help a lot!

wanted to ask you... have your doctors in detroit talked anything about stem cell transplant regarding you scar tissue on your spinal cord? i've read about stem cell transplants from your own sinus' onto your sci... just wondering... and throwing it out there ~ in the event that it could be helpful to you

[my-sister]

ok... i can't figure out how to get my profile pic to show with my posts or replies and i don't know how to add friends... grrrrr....