[stef]

Hi everybody,
I dont know what to do anymore!!
My husband just got at home from the hospital 2 weeks ago after a 6 months stay in it.
Its getting so hars on me emotionally and physically.
I got some days off work to try to see if i can find out a way to go work and still take care of him.
We have a 3 year old daughter and is getting hard on her too.
We didnt left the house for 2 weeks and I am going crazy.
His family dosent help a lot and they dont understand what I am going tru.
Last night we also tried to have sex.
It dosent work I getting so depressed that its not funny.
he been in bed for the past week.
I have to take care of everything and everybody.
I dont have time for myself at all.
I cry all the time and i dont want to live a marriage life like that.
I am always mad and tired and he is too but its like he dosent really understand.
all he dose is sleep and eat.
I dont have no family here and my friends just left me alone.
They dont call me anymore or answer on my calls.
I am lonely and I dont know if I can go back to work.
i need to go back to work and its really sad but that eill be the only way i can get out of the house.
I just dont know how people can have an happy life after a sci and take care of there husband and look happy about it.
I wanna try to be positive but right now i dont see any positive part on our NEW LIFE.
Its just to hard and sad for me and I dont know what to do.
We cant have sex or do anything i feel like I have another child just more havy.
Please help me maybe you have some ideas
thank you

[greybeard]

Stef,

Do you realise how many sentences in this post contain the word "I"?
Just a few examples:
I dont know
I have to
I dont have
I cry all
I am always
I dont have
I am
I need
I just dont
I wanna

Does that tell you something?

[allis53ca]

Stef, not everyone CAN handle it.....doesn't make you weak, selfish, or a bad person...just be honest about it with yourself and if you can't do it, go now before theres nothing left of you....i'm thankful every day that my wife was honest and left while i was still in icu...it avoided the resentment and heartbreak i'd had to endure if she'd stayed for a year or two, let me become dependent upon her and THEN said no way and left...i honestly believe she did me a favor and forced me to make it on my own and not fear the uncertainty of being alone...everything i've done post injury, I'VE DONE....ME...MY ACCOMPLISHMENTS...i'm glad she didn't possibly ruin her life and mine by staying..i can't imagine living with someone who blamed me for everything they missed, lost, or never got to experience because i broke my neck...i'd rather be alone than with someone who resents me every time they look at me......i have more respect for someone honest enough to leave than someone too chickenshit to leave that makes life harder than being crippled already is

[Saneaj]

Stef

I do hear you. And I do understand what you are going through. You are putting to words many of the same feelings that new caregivers experience.... the only difference is... that most of us suppress those feelings and shove them aside so that we can deal with the situation at hand. Because if you don't... it WILL consume you. And then you will be no good to anyone.

We share a lot of similarities. When my hubby fell I was only 22. I also didn't have family to help. My mother had died 3 months before his accident of complications from guillian barre and my father died one month after his accident from AIDS. My husband's family felt that I was selfish in keeping him alive that they totally abandoned us. Although I didn't have children of our own... I had temp custody of our niece who was a toddler, my little sister who was 12, and his cousin who had been abadoned by his uncle for crack and he was only 15. So I do understand what you are facing. Like I had told you in an earlier post, you are going to have to make up in your mind now to start seeing things from a different perspective. If you don't, you will drown. Because right now, it is as if you are stranded out in the depths of a very stormy sea with no hope in sight. You feel like you are drowning. Part of you wants to give up and give in, but there is a part of you that still wants to fight. I know this because you keep coming here for help.... and that is a VERY good thing! But you are going to have to listen to what people are telling you... you have to turn your thinking around and very soon.

I do agree with what greybeard is trying to say to you... you have to get your eyes off yourself and focus on helping your hubby. Obviously he is depressed... I'm concerned when you tell me that he hasn't gotten outta bed for a week now. That is not good. It's not good on his health, on your health, on the health of your children or on ya'll morale. You need to become a great encourager to him. I know that this is easier said than done. Because for the first two years my husband was as venumous as a cobra. His depression was emense and intense! My friends that I did have had left me just a few weeks after he came home because they had lives too and this was too intense for them to handle. It's just how things work. For instance, right now, with what we are currently facing, we are 3 weeks into my hubby being bedridden. We barely see people. It's just how it is with long term care. But during those times, we as care givers have to dig way down deep for help.... because for me... God was the only one left. He never left me like everyone else did. He became my comfort in these times. It's funny how times like this can bring you closer to someone like that... but for me... God was my only lifeline. I didn't have this forum all those years ago. Sweetie... hear me when I say... if you are going to make it through this... it's time to get real... and for me... it was time to get God. You will have to decide for yourself who you will lean on... but you WILL have to lean on SOMEONE.... this is too heavy to go it alone.

I also understand about the sex. My husband is unable no matter what we try. He is so prone to hyperreflexia that trying things turn out dangerous for us. But... eventually... love finds a way to show itself. It's just going to take time for all of that to work itself out. Have patience. And that is a word that you will begin to hate... patience.... but learn to embrace it for it will be a great friend. This is one of those times that we have to put ourselves and our needs on the back burner and be there no matter what... like our wedding vows stated... in sickness and in health... for better or for worse... I know that these are tough words, but these are tough times. And no... it's not fair... but life never is....

I also understand about work being your 'out'. For many years I had put my hubby above me... and I still do... but a few years ago he was doing well enough for me to go to college online. He encouraged me to do so and I did. And now, I'm finally starting to walk into what people are saying is my 'calling'. I LOVE media! I've even recently won awards for my web designs. It's my true passion in life. My pastor and I went into partnership together and started our own media company. They had even given me my very own office! Some people in our church got together and built it for me. It was like walking into a dream! After all these years of taking care of my hubby, he was finally getting healthy to the point where I could leave him for a few hours a day and work out of my very own office. It was done up like a NY loft and they even gave me my very own green and blue screens. I was finally gettting a taste of real life. It was truly my dreams being fulfilled. You can't even imagine how it filled my heart. And then this... I'm back at home. It was like it was all a very cruel joke. I've been here for 3 weeks straight now with no end in sight. My pastor brought all of my computers back to the house for me so that I can run our business from home... but it's not the same. Now... I have a decision to make... I can either pitch a hissy fit about how this isn't fair... about how I see other women in the church getting to live their lives with husbands who are able bodied and so forth and so on... or... I can just swallow hard... and say 'here God... take it because I sure can't... then just simply give it over to Him... trust that He has my best interests at heart... some how... and go on. Just living it one hour at a time. For there is really no other choice if you take your wedding vows seriously. Sometimes in life we have to deal with things that others may never have to encouter. It's not fair... but it's life.

I also understand about being tired. For the first 9 years the insurance would not pay for us to have a lift. I am 5'4" and my precious hubby is 6'. I lifted him in and out of bed all those years, plus all of the turning when he was in bed, and all of the pulling and tugging and everything else that goes along with it. You see... my hubby crushed C2-C7 and started out a C2. It was years down the road before he regained some and is now classified as a C5 with brain stem residuals. So he isn't even really a true C5. I have done so much damage to my body over the years and now that he is bedridden... it's stinkin hard! Last night I went to turn him, he spasmed the opposite way and really hurt me. I had already retorn my one chest muscle a few days back when I was trying to lift him for wound care. So trust me... I understand what being tired and being in pain is all about. But... it's all a mind thing. I am determined to see this through. Now that doesn't mean that he hasn't been thinking about things. He told me if things came right down to it that he would divorce me (only because he would get more benefits) and move into a nursing home. We would sell our current home so taht I could buy something smaller and get a used car and have a little to live on while my business starts to grow. We DO NOT want this to happen. I cried last night when he told me all of this... So I, along with EVERYONE in this forum, totally understand what being tired, hurting, stressed out, left alone, despair... etc... is all about.

But here's the difference... we have all made up in our minds that we are moving forward. Staying in that place of hurt will capture your heart, tear you to pieces, and eventually kill you. Trust me.. I know...and it's only because of God, my church, and people here in this forum that have stuck with me and helped pull me thru those most darkest of times in my life. Now I really want you to listen to me...okay... this doesn't mean that just because I'm telling you to pull yourself up and move ahead... it doesn't mean that you are never supposed to suffer those dark moments. Those moments will come. Especially when you are so tired and in so much pain that you just can't see straight anymore... But... when they come... do like you are doing now and reach out for help. You may not like what you hear... but believe me... it will save you! When a drowning person is thrown a life ring, it doesn't mean that they are automatically saved from the murkey deep... they still have to do their part and grab ahold, pull yourself in, and hang on...

Everyone here knows what heartbreak is all about. We truly understand what you are feeling. So please... take this life ring that we are throwing... grab hold... hold on tight... and the advice given here will help to pull you aboard. Life WILL get better. Yes... it WILL be different... but that's what life is really all about... change. Everyone's life changes over the years in one way or another, it's just with ours, it changed overnight....literally. But there is Hope, there is Life, there is Love, after sci! You just have to be willing to find it....

Hugs, Hugs, and more Hugs to you sweetie!

Stef....

I also agree with allis53ca... If you find that you truly cannot handle this... his advice is solid. Only take my advice if you are going to stay and see it through with the man that you love. But if you can't... it's better to go now then to stay and create misery...

[gordonr]

Dear Sheri,

That is a most amazing letter and an inspiration to us all.

With regards to the posts we have already exchanged, I was most most heartenned by this bit about you and your husband considering alternatives:

Saneaj, on Dec 28 2009, 08:10 PM, said:

I am determined to see this through. Now that doesn't mean that he hasn't been thinking about things. He told me if things came right down to it that he would divorce me (only because he would get more benefits) and move into a nursing home. We would sell our current home so taht I could buy something smaller and get a used car and have a little to live on while my business starts to grow. We DO NOT want this to happen. I cried last night when he told me all of this...

I understand that you do not want to give up. But you are also right to look at other possibilities.

Someone very important (can't remember who) said that one main element of real intelligence is the ability to contemplate two completely different plans at the same time. In this case, I really think you should flesh out your back-up plan. For instance find out where he could really go, and visit those places. Become familiar with all the steps to admission (most of the ones you want will have waiting lists and evaluations that occupy time even before you get on the list so its good to get some things done in advance).

I think you still have a lot of fight in you, but if there is a turn around for the better, and your hubby survives another five or ten or twenty years, you will eventually be physically unable no matter WHAT your mental is still capable of, and so, careful planning now will not be wasted.

And as for the upside, if you do put him in a home, and it is a good home, he will be well cared for, and there is no reason for YOU to feel you have abandonned him. On the contrary, I'm sure you will be his constant visitor. My grandfather was in a home for many years, and my parents went to have supper with him, as guests, almost every night. And later when my parents were in a home, I vistited from out of town and saw that my brother had established the same pattern. That is pretty well daily visits. There was actually a sort of family atmosphere around the home provided by the regular family members, who not only visited their own, but even took up some of the slack for those less fortunate who never had visitors.

So, if we say there is life after sci, then there can also be life after the hand-off to a nursing home.

In fact, I am very grateful to you for haveing started these discussions, because I see that my condition, and the condition of my wife will not permit of our current living situation going on for ever. I am good now, but in a few years, if I can't do my transfers, then there is no way that she is going to be able to look after me. After all, she isn't getting any younger either.

Bottom line: We are all in this together. At different stages. And you are experiencing a critical transition. And maybe that transition is not the end of the world. I hope not. For you. And a few more years down the road, for me as well.

Best,

Gordon

[Saneaj]

Gordon,

Thank you for your response. And yes, my hubby has already been looking into a local nursing home. It will be close to our church and all of our friends and has good reviews. He was just talking to the owner the other day while I was napping. He's my great protector and has my best interest at heart also. And after I totally freaked out that he did that... and calmed down a bit... I understood the love that he must have for me in making that phone call. I am truly blessed and honored to be his wife.

And Stef... it will take the both of you to get through this. My relationship with my precious hubby did not happen over night. Like I have stated before, he was so very bitter and hateful in the beginning. But as you travel down this road together, you develop a deeper kind of love, a truly pure type of love that able bodied couples are never able to experience. And somehow... it sort of makes up for the lack of sex. It's a very different type of love and it's so worth finding. If I had the choice to go back in time... knowing everything that I know right now at this moment in my life.... knowing every single thing that would lay ahead of us if I chose to stay with him through this.... even as hard as it is for us right now as we may be experiencing the final days of his life and our life together.... I would STILL WILLFULLY CHOOSE to stay with him. The love that we have developed can never be taken from me... and I will cherish his love well after he is gone. I think my pastor says it best when he told me that my hubby is a general in the army of Christ. Not only because of the man whom he has become through all of this, not only because of the unselfish way that he looks after me, but because he has already overcome the fear of life and death. Knowing that no matter what happens, whether he lives or whether he dies... he is still the victor.

Your husband will change through this... but it will take time. Don't despair, sweetie. There is ALWAYS hope!

[greybeard]

Saneaj, Is this the same lady that was ready to step off a cliff a few days back? I am so relieved that you you've got through that time. As Gordon says, your post is inspirational.

Stef, My response was as blunt and to the point as my posts tend to be, and I am sorry if you found it offensive. It was not intended to be. Saneaj put everything so much better. You could learn from her if you have the will to do so.

This post has been edited by greybeard: 28 December 2009 - 10:46 PM

[Spinner]

I hate to sound harsh here, but I must agree with allis. If you can't handle it, leave. My boyfriend's girlfriend at the time of his accident married him while he was still in the hospital. Along with his mother, she made life and death decisions about his treatment, his rehab, and where he lived. She brought him to a place he did not want to be, and where he was very unhappy. Within a couple of months of his leaving the hospital he had an accident where he fell out of his chair. As he fell his catheter came out, she walked through the kitchen to see him helpless in a puddle of his own piss, kept walking and asked if she could call someone to help. This happened on his birthday. My point is that some people/ relationships are not going to withstand something this catastrophic. If that is the case, face it, deal with it, and move on.

I love my fiancee more than words can describe. I thank God for that man every single day of my life. Not only is it ok for me to take care of him forever, it is my pleasure, it is a beautiful way to show my love to the man who makes me whole. If you are unable to make it through this, move on and let him find someone who can handle it.

On the other hand, if you feel like this is the man who completes you, then read saneaj's post, then read it again, and again. Then resolve to do what it takes to get yourself through this and come out the other side with your sanity in one piece.

[jscott92064]

Hi Stef:

I hear you loud and clear. My husband is not home from the hospital yet, but I imagine we will have our ups and downs. (He had a botched surgery on November 20 of this year -he is paralyzed from t7-8.) We have a 9 year old daughter. I too feel exhausted supporting the two people I love the most. I also know how tough it is with a 3 year old because I was a stay-at-home mom too --that's exhausting in itself.

I'm not religious --I don't believe in a God per se, rather I add an extra "o" and believe in Good. There is magic in the universe to be had.

Good comes out of everything. When you are feeling at your darkest moments, you need to repeat this phrase.

With everything you have going on, it's definitely easier said than done to find time for yourself. But you must --even if it's a few minutes of deep breathing and meditation. Block out everything and repeat this simple phrase "all is well".

The control freak in me (I'm an Executive Vice President at a software company) is having to let go of control and go with the flow. I'm having to connect with humanity more than I ever expected. And you know what --folks are amazing. My neighbors insisted on putting up holiday lights. My girlfriends bring me dinners. Even strangers offer to help - and that's before I have asked for it.

I look at myself as being born again. I feel like I am deep within the earth sometimes when I'm sobbing. (The shower is a great place to cry when you need privacy!) This is the journey of grief. Life is different now.

But in our darkest depths of grief, way in the bowels of the earth, that's when we find the diamonds and gems. What precious gifts will you bring back with you when you resurface from the earth and into the light? You may be surprised by all you learn about yourself!

For me, I am humbled by this journey and I have renewed respect for my fellow humans. As crazy as it sounds, I'm letting people love me more openly.

And I still have tons to learn because my husband is not home yet! (He had a pass for Christmas Day and that was stressful in itself --he fell out of his wheel chair and I needed neighbors to help get him back in. So now, I don't have to worry about his first fall --sorta like no longer worrying about that first ding in your new car! Trust me --I freaked --it was a hectic holiday--very emotional--and this was icing on the cake. The next day, though, I got back "on the horse" and we praticed transfers and agree to communicate more until we know what we are doing with this wheelchair thing.)

Here's another crazy part of this for me --I get strength by thinking of other situations I would rather not have. For example, I have a friend whose husband has alzheimer's and he is very young. I will take an SCI over that any day!

Okay, back to some straightforward advice:

-If you can get some therapy for yourself, go for it. A trained therapist or if you do belong to a church, use that network for sure.
-It's easy to get overwhelmed with the huge big picture of your future --STOP!!!! Be in the moment and focus on today.
-Which leads me to this --take small steps.
-It's harder with a 3 year old, but with my husband, daughter, and I --we have an agreement to be extra gentle with each other.
-Get some outside therapeutic help for your husband. You will get crushed if his mental capacities continue to decline. Sometimes the nicest gift we can give each other is when we call in additional help. It's not a cop-out. My husband and I agree he will join a men's support group.
-You have a child you are raising --join a Mommy and Me group--your child is very important too. This way too you can have a network of women friends who can set up playdates with you.
-Find your sense of humor --it helps alot. (I gave my husband a shower and he totally farted in my face when I was turning him to do his back......)

Good for you for being so honest! Write me back again and let me know how you are doing. I will do the same if you like. This is a journey --it's a wild ride --that's for sure. But you can do it --I believe in good and I believe in you!!!

Lots of love,
J

[Dave Bishopstone]

Hi Stef,

I have read your original post and Greybeards initial response to it, I can obviously see what he highlights, and looking beyond the "I" and I too wondered where the "We" had gone. It struck me how little preparation seems to be given to the SCI person and their family for the mega changes they will have to face post SCI. To be perfectly honest my wife and received precious little advice of what to expect and tips on dealing with issues when our son was injured - not until that is, I found this website - it's invaluable.

I guess in any good marriage, before a life changing event occurs, the couple work as a "team" discussing things and working things out together - when an SCI comes onto the scene, it does seem sometimes as though the SCI partner is assumed no longer to be a team member, decisions are taken alone and communication stops. SCI does not take away responsibility, nor the ability to be make decisions or reduce intellect.

Now more than ever the relationship you had forged pre SCI, that teamwork, where you talked openly about feelings and took joint decisions about the future is really vital - SCI is a life changing event without any doubt, adapting to the changes it brings is extremely hard for everyone closely involved - for partners, it makes very real the words we, that are married once said "In sickness and in health" - that same day the "I" disappeared in favour of "We".

Really hope that things get better, but be patient, very patient.

Dave

[doublelibra]

Stef, Isn't your husband eligible for some home health care through insurance, medicare, or medicaid, whichever he's covered by? My family does not do the hard core personal care I need. I have a nurse every other day, and two aide visits daily. A nursing home is such a morbid and costly alternative, unless he actually wants to be in one. I spent time in one years ago, and am very biased against them, I will admit.

-doublelibra

[Saneaj]

Doublelibra... that's good advice...

You really need to be talking with a social worker because benefits differ from state to state. For instance... my hubby is only on SSI. Unfortunately we do not quailfy for Medicaid or he would receive tons more help and support. So after a VERY long conversation a few weeks ago with our new social worker... we found out that we don't qualify for hardly any assistance at all. And Medicaid differs from state to state as well. The ONLY reason we qualify for skilled nursing visits (that last just under an hour and ONLY address the spider bites issue) 3 times a week for the first two weeks and now we are down to just twice a week is strictly due to the fact of the spider bites issues with him being bedridden and all. His heart condition, although its so severe, doesn't even qualify us for assistance. We do not qualify for ANY type of personal care help at all. They told us that we could receive personal assistance care but would have to pay out of pocket for it at a whopping $70 per hour. Who can afford that! We were told that if we were to divorce, he would receive a few more benefits or if we were to divorce and him move into a home he would receive even more benefits. We were also told that if we moved almost anywhere out west or further north, that we would then receive home health that would address these issues. But we barely make it on his income as it. So moving to a place where the cost of living is more expensive than were we are now would just be crazy... and with his condition the way it is... could also be fatal.

One friend that we knew years ago, moved from Illinois to Atlanta. She didn't know that benefits varied from state to state. She was a very independent C-6 and lived alone. Up north, she had a personal aide that would get her up and ready for work every morning and one that put her to bed every night. When she moved to Atlanta, she never thought to check with that state to see what benefits she would qualify for... she was devistated to find out that she qualified for NOTHING! Her parents had to move her back to Illinois where she could receive assistance to keep her independant lifestyle.

So really talk with your social workers. They can get you hooked up for whatever type of assistance that you DO qualify for.

[jscott92064]

Stef -

When things get tough for my husband, he reminds himself he has a child to live for and to be a good example for.

With our daughter being 9, she's affected very differently than a 3 year old. My husband is a stay-at-home parent and he is very involved in her school. Her journey is different than your child's journey.

Raising a 3 year old is tough in itself and your child has needs too.

Maybe reminding him of your child and how his attitude can be a shining example in her life will help him.

Just a thought.

Love & Light & Hugs!

J

[stef]

[I thank evrybody for the help and support.
I will sure take every advice and try to make it work.
In less then an hour will be a new year and I can just hope and pray that it will be a better one.
I have many toughs in my mind every second of the day and sometime I feel like I am going crazy.
Yesterday morning me and my husband fight and he told me he was going to moved out to his dad's house.
I dont know why I stoped him on make the phone call.
I dont know if I just feel sorry for him.
We have a 3 years daughter and like I said I am not from here i am from italy and I dont want to take away my daughter to my husband but I also dont want be here alone without my family if I am not with my husband.
I feel like I am obligate to stay here and I think I still love him even he really hurt me but I am really confused on what I wanna do.
Its really hard and difficult for me.
I try to have a positive attitude and try to make fun of things but it dosent last very long.
Someone said that I always say I I I I!!! Where is We anymore???
Me and my husband are living like friends, brother and sister!! We dont have any intimate life anymore and we cant what we want anymore no even simple things.
I know the marriage is more then sex and all that but I am young and I still think about having fun.
My husband dont look at me anymore.
Sci took everything and I feel its more then life changes.
Its a lifestyle some people fit in it some dont.
Just hope we can male it.

[jscott92064]

stef, on Jan 1 2010, 05:27 AM, said:

[I thank evrybody for the help and support.
I will sure take every advice and try to make it work.
In less then an hour will be a new year and I can just hope and pray that it will be a better one.
I have many toughs in my mind every second of the day and sometime I feel like I am going crazy.
Yesterday morning me and my husband fight and he told me he was going to moved out to his dad's house.
I dont know why I stoped him on make the phone call.
I dont know if I just feel sorry for him.
We have a 3 years daughter and like I said I am not from here i am from italy and I dont want to take away my daughter to my husband but I also dont want be here alone without my family if I am not with my husband.
I feel like I am obligate to stay here and I think I still love him even he really hurt me but I am really confused on what I wanna do.
Its really hard and difficult for me.
I try to have a positive attitude and try to make fun of things but it dosent last very long.
Someone said that I always say I I I I!!! Where is We anymore???
Me and my husband are living like friends, brother and sister!! We dont have any intimate life anymore and we cant what we want anymore no even simple things.
I know the marriage is more then sex and all that but I am young and I still think about having fun.
My husband dont look at me anymore.
Sci took everything and I feel its more then life changes.
Its a lifestyle some people fit in it some dont.
Just hope we can male it.

Stef:

Having a positive attitude, for me, means believing in myself and keeping it real. It means giving myself permission to have all my feelings, which I am having right now --anger, sadness, frustration, hope, etc.

For starters, you are not that powerful to control all parts of your relationship --meaning your husband has to do his part.

Maybe you two need a break. Not a forever thing --just a mini-vacation from each other. Can you set that up?

Also, if your husband is depressed and angry, is he fit to be a parent? Only you two know. Ask him if he needs time away from you and your daughter so he can sort things out. Try to do it in a way that's not attacking.

There's this phrase on an airplane about putting on your own oxygen mask before you help others with theirs.

You must take care of yourself so that you can take care of your 3 year old daughter.

I recommend you make your child the priority over your husband.

Also, be gentle with yourself. You are a good person because you are trying.

From one mother to another, I would not let my relationship with my husband hurt my child. I just wouldn't.

Your husband is hurting, that's for sure, but that does not give him the right to attack those around him.

Let me know if this helps.

Lots of love,
J

[gordonr]

jscott92064, on Jan 1 2010, 06:09 AM, said:

Also, if your husband is depressed and angry, is he fit to be a parent?

Dear J,

Asking this basically raises questions about any sci being fit to parent. All new sci's will demonstrate anger and depression. Some sooner. Some later. Some in a more obvious way. Some in a more hidden way. But we all do.

Quote

Ask him if he needs time away from you and your daughter so he can sort things out.

This is way too soon. The guy was only injured six months ago. He has only been home a couple of weeks. He is trying to get a grip on his new life. He is dealing with wishes, and fears, not certainties, and he is doing that in a context of grieving for his past life. In fact, he has just COME BACK from a separation (where he was six months in hospital). This is now the time for him to experiment with being REUNITED with his family, not to go away again.

More important, we are not coulnselling HIM, we are counselling HER. This is a time when Steff must consult her own wishes and fears. And what I read in her posts now, is a desire to find some way o make her family work again.

Quote

Try to do it in a way that's not attacking (That is asking if he wants to separate for a spell)

There is no way to say a thing like that which is not an attack and an insult. Face it, this technique of a "trial" separation is usually just a sugar coating and manipulation practiced by someone who has already decided to leave. (In fact, its just short of a kick in the balls.) If you want to leave your husband. Leave your husband. Fine. But do it yourself. A new sci has enough to deal with without getting saddled with this kind of passive/agressive separation strategy.

HOWEVER... Steff's posts do not show that she is at that point. Not at all. Steff must consult her own desires. If SHE wants to stay with her husband (or is even looking for hope that she MIGHT be able to stay with her husband), then the very last thing she wants to do is try an experimental separation now.

Of course, eventually both partners must know their own minds, and make firm decisions and commitments. But that will take time.

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I recommend you make your child the priority over your husband.

From one mother to another, I would not let my relationship with my husband hurt my child. I just wouldn't.

Your husband is hurting, that's for sure, but that does not give him the right to attack those around him.

I reread Steffs posts from beginning to end and found nothng about this. Once again, I think you are jumping the gun and assuming things, and that is reacting to fear rather than reality.

Now on a personal note...

I see that your partner was hurt on November 20, 2009. By my count, that is not even six weeks.

You are obviously very bright and of superior intellectual capacities. Therefore, your mental "understanding" is way beyond your ability to really integrate what has happenned to you. I say this with great sympathy, because I have the same advantage and affliction.

One thing I would caution you about is extrapolating too far out. It will take years for the dust to settle.

The only quick solutions are the radical break strategies. Throw down a porcelain vase. It takes but a second. Putting the pieces back together takes forever. Similarly, convincing yourself that you should leave your partner takes guts, it takes determination, it takes the ability to weather a crisis, and it provides closure and certitude. It is a quick fix.

On the other hand, nurturing your relation takes hope, faith, the ability to suffer INCERTITUDE and to risk failure on pure speculation over long stretches of time. However, it MAY provide you with a path to superior human experience, experience of love and life absolutely unavailable to those who have never been there and done that.

I agree. This is a tough choice.


Best Regards,

Gordon

[gordonr]

stef, on Jan 1 2010, 05:27 AM, said:

[I thank evrybody for the help and support.
I will sure take every advice and try to make it work.

Dear Steff,

I have been reading along with your posts, and I get the idea that you are looking for hope.

Nobody has all the answers. If you want to go down this road, you must just figure it out step by step.

Lots of people have told you it is ok for you to leave your husband. I also hold that view. But if you wish to go on, then we will all encourage you in that choice also.

Now I am thinking that you have decided to at least make a try.

And if you want to try, you must now start thinking, not about the feelings, but about the practical situation. What exactly does your husband need? How does he pee? How does he poop? Does he have sores (hint: he must not have sores). If he doesn't have sores yet, what are you doing (both of you) to see that the sores will not come (hint: examine the skin every day and do WHATEVER it takes to avoid sores) OR if he has sores, what are you doing to get rid of them (hint: you can and must get rid of sores)

I don't know your financial situation. If you are gone all day at work, what is your husband going to do? sit all day in his chair? If so, go back to thinking about sores. You at the very least need a state of the art cushion. That is for sure. But quite possibly, you will also need a plan that involves him getting a break from the chair. And if he is in bed, he must absolutely be turned every few hours.

Does this sound confusing?

Ask for details. It will be our pleasure to respond with personal experience for every question you might ask.

All the best to you,

Gordon

[allis53ca]

and now read Gord's post again.....and again...and again....really!

[SandieT]

Stef - Don't be too hard on yourself, it is very early days. The only way I could explain how I felt in the early days after my son's accident was an overwhelming sense of grief for what my son had lost. I was very confused at feeling like that as my son had survived, he was alive, why was I grieving? I think maybe we go through the same feelings and emotions when someone suffers a sci as we do when someone close to you dies.

You feel a great loss, hoplessness, anguish, denial, anger, shock, confusion, pain, guilt, depression, lonliness, and eventually - Acceptance and Hope.
You will eventually learn to deal with the reality of your situation. You will start to look beyond the here and now and start to look forward and actually plan things for the future.
You may feel some or all of the above, each stage is different for different people, some get to the acceptance stage quicker than others.
As I said before don't be too hard on yourself this early on, you will learn to live and laugh again even if it doesn't feel like it just yet
Good luck.

(PS My son and his partner had a 12 mth old baby when he had his accident, the hosp/rehab unit was 70 miles from where they/I lived, and it was hard going, but we visited every day for months + months. It was hard on my son (he didn't see his baby for nearly 2 mths as he was in ICU and fighting for life at the time) It was hard for my daughter in law as she had to leave her baby boy with relatives everyday to visit my son. She basically became a single parent during this time.
Eventually my son came home and he is abrilliant dad to their little boy who is now just 3. It gives me so much joy and pleasure to see them together laughing and playing, my son throwing cushions at his little boy. My grandson pushing his dad out of the way if he wants to get past him. Just little things, but life will have some sort of normality eventually. Don't get me wrong it is far from easy for them, and there are days when he is not well, but they make the best of things, and work things out between them.)

[stef]

Hi everybody!!
I have to say that you are all good people try to help me on this difficult moment of my family life.
I have to say the if it was so easy taking a short cut and just leave my husband I would already done it.
Its not the easy to do as you say it.
There is a lot of memories and feelings going on and part of me wants to give up and the other part wants to hope the everything will be all right.
I love my husband but ours lives changed a lot and like I said I dont see myself living a life without him near by me but Its the memories of our 8 years together and all we went true.
But its so difficult explain what is going into my mind right now.
Its like when you cant let go if someone die and wanna keep the memories alive in your life.
But in my case its hurting so much on thinking our past and cant let go and see him for the way he is now
I dont want him like that!!!
I want him like before, I want my life back and I am hurting everyday more and more because maybe this will never happen.
I am so desperate and I really dont know what iwant or what to do.
I just want to fix this and I cant!!!
He used to fix every problem we have been the men of the house and take care of me and my daughter.
I thought we had a good life but it was all in my mind because what he did 6 months ago.
he lied to me and he just trip out on mushrooms.
It wasent the first time he lied to me about drugs and he knew I dint want have nothing to do with him if he would use it again.
Yes people!!! thats why I am so mad at my husband!!
he didnt care about me or ours daughter the day and now thats where we are.
So I feel stupid just to be here even he say he is sorry and he didnt mean to hurt us like that!!
But thats what he always say when he dosent something stupid.
I love him but iside my heart i feel so hurt for what we are going true because he been so selfish that i dont feel he deserve another chance.
In the mean time i hope i can get over that but I dont know how.
So now you know what really happened the today and i feel even you say to forgive him and go pass that its not the easy!!
I am still here but there is not a day that i dont think to leave.
He is making me and our daughter living a miserable life.
call me selfish if you want but i dont see that i am the selfish person in here.
His family they all hate me!!
They been saing that I have a plane ticket to go back in my country with my daughter for 6 months!!
But I am still here and they sure dont make it easy for me!!!
My husband dosent say nothing for the way they been talking and treated me.
So what do you think about that!!
I better stop because more i talk about all this and more mad I get.
I am going to bed thatks to be here and listen to me.

[allis53ca]

Stef, not everyone CAN handle it.....doesn't make you weak, selfish, or a bad person...just be honest about it with yourself and if you can't do it, go now before theres nothing left of you....i'm thankful every day that my wife was honest and left while i was still in icu...it avoided the resentment and heartbreak i'd had to endure if she'd stayed for a year or two, let me become dependent upon her and THEN said no way and left...i honestly believe she did me a favor and forced me to make it on my own and not fear the uncertainty of being alone...everything i've done post injury, I'VE DONE....ME...MY ACCOMPLISHMENTS...i'm glad she didn't possibly ruin her life and mine by staying..i can't imagine living with someone who blamed me for everything they missed, lost, or never got to experience because i broke my neck...i'd rather be alone than with someone who resents me every time they look at me......i have more respect for someone honest enough to leave than someone too chickenshit to leave that makes life harder than being crippled already is

buy two plane tickets

[jscott92064]

Gordon:

Your posts are always a good read for me and I sense we could have some great discussions and debates about life - that's for sure.

I agree with you --perhaps I was reading too far into her posts.

However (ha ha, you knew this was coming), my sense is that if a marriage has problems before SCI, these problems will be even larger after the SCI.

I get the sense their marriage was in trouble already hence my comment about making their child a priority. Their 3 year old is in desperate need of a nurturing environment.

We as parents have to provide that --no matter what life deals us. I don't get the sense she and her husband are able to do that.

However, you are correct --I read probably too far into her emails and maybe their child is thriving?

In any event, I apologize to you and other if folks felt I thought having an SCI made one not a fit parent. I do not.

I've noticed with my husband's SCI, many people suggested we send our 9 year old daughter to stay with someone else while we healed. That could be the right choice for others, but not for us. We feel emotionally fine to work through this and to be good parents to her. But that's us.

I was definitely projecting my feelings onto Stef regarding her child. Children can get so easily lost through all this. People say "oh, they are so resilient" -well, she's got huge questions and fears and anger around this --she needs my husband's and my support --she looks to us for the example of how to live with this new change.

In our house, our motto is "together through all with love in our hearts" We say it before every meal.

You know --I looked to find something to read with my 9 year old, from a child's perspective, on how to re-introduce her father to her schoolfriends and how to understand a bit more what he was going through and what he can do in the future. (My husband was the stay-at-home dad --very active in volunteering with her school.)

There's not much out there and I'm thinking of writing a book or two. My husband will co-author it, of course.

So these have been tough times for our daughter and I am caring for not just him, but for her. Can she touch him without hurting him? Why does he need a "bag with pee in by his side", will kids tease me at school, etc., etc. Those are the types of questions she's asked and she's had her share of crying with my holding her.

But this is my stuff and not Stef's.

I will make sure in the future I am more careful not to project my own "stuff" onto others. I was concerned about her 3 year old and maybe that's not an issue.

[qbounce]

jscott92064, on Jan 2 2010, 10:33 AM, said:

Gordon:

Your posts are always a good read for me and I sense we could have some great discussions and debates about life - that's for sure.

I agree with you --perhaps I was reading too far into her posts.

However (ha ha, you knew this was coming), my sense is that if a marriage has problems before SCI, these problems will be even larger after the SCI.

I get the sense their marriage was in trouble already hence my comment about making their child a priority. Their 3 year old is in desperate need of a nurturing environment.

We as parents have to provide that --no matter what life deals us. I don't get the sense she and her husband are able to do that.

However, you are correct --I read probably too far into her emails and maybe their child is thriving?

In any event, I apologize to you and other if folks felt I thought having an SCI made one not a fit parent. I do not.

I've noticed with my husband's SCI, many people suggested we send our 9 year old daughter to stay with someone else while we healed. That could be the right choice for others, but not for us. We feel emotionally fine to work through this and to be good parents to her. But that's us.

I was definitely projecting my feelings onto Stef regarding her child. Children can get so easily lost through all this. People say "oh, they are so resilient" -well, she's got huge questions and fears and anger around this --she needs my husband's and my support --she looks to us for the example of how to live with this new change.

In our house, our motto is "together through all with love in our hearts" We say it before every meal.

You know --I looked to find something to read with my 9 year old, from a child's perspective, on how to re-introduce her father to her schoolfriends and how to understand a bit more what he was going through and what he can do in the future. (My husband was the stay-at-home dad --very active in volunteering with her school.)

There's not much out there and I'm thinking of writing a book or two. My husband will co-author it, of course.

So these have been tough times for our daughter and I am caring for not just him, but for her. Can she touch him without hurting him? Why does he need a "bag with pee in by his side", will kids tease me at school, etc., etc. Those are the types of questions she's asked and she's had her share of crying with my holding her.

But this is my stuff and not Stef's.

I will make sure in the future I am more careful not to project my own "stuff" onto others. I was concerned about her 3 year old and maybe that's not an issue.

jscott,
In Stefs first post, it says clear as day that it's getting hard on the 3 year old daughter also. Anyway, project all you want on here. I think you "got it" a little closer than you (or others here) think!

[jscott92064]

jscott,
In Stefs first post, it says clear as day that it's getting hard on the 3 year old daughter also. Anyway, project all you want on here. I think you "got it" a little closer than you (or others here) think!
[/quote]


Gordon:

You rock, my friend. Thanks for your kind words and for keeping it real.

My journey has just begun and I'm grateful for you and everyone else here being a part of it.

J

[gordonr]

J.,

Thanks for the kid glove treatment, but believe me, it isn't neccesary. I am am very interested in your experience and I don't ruffle easily.

With regards to Stef, I suddenly realized that we were getting things mixed up. There were two or three people with similar problems/feelings, and I decided to deliberately sort them out as individuals rather than as a composite conversation. And lo and behold I found that Stef had not mentionned any problems with the child, or even anger generally. Her main beef seems to be that the guy was stoned on mushrooms when he broke his neck.

My reading now, is that she intends to stay with him for at least a while (inspite of the very compelling case for a clean break made by our friend Allis53). And I believe that if this is the case, she must be led to face the practical realities, in order to get a grip on the health issues before her husband pays the price. Feelings are fine, but sci care is about bowel routines and skin care. If those things are covered, the feelings tend to look after themselves. Healthy mind in a healthy body and all that.

Now returning to you,

Quote

I've noticed with my husband's SCI, many people suggested we send our 9 year old daughter to stay with someone else while we healed.

Welcome to the real world consequences of Oprah-Speak. Every idiot has read a book.

Quote

That could be the right choice for others, but not for us.

Bingo. If you want to have a family you must embrace it.

Quote

We feel emotionally fine to work through this and to be good parents to her.

There are no guarantees. You cannot predict what will happen. (The best laid schemes of mice and men...). I applaud your resolve to go forward. And I regret the fact that you are finding yourselves obligated to justify your actions towards others who have (and feel comfortable displaying) a prejudice to the efect that you are likely incompetent.

Unfortunately, you are going to get a lot of that.

Quote

Children can get so easily lost through all this. People say "oh, they are so resilient" -well, she's got huge questions and fears and anger around this --she needs my husband's and my support --she looks to us for the example of how to live with this new change.

When it all comes down to it, the key person in this portrait is your husbsand. If he can pull himself together, everything is going to be allright (unless you find the sci life too challenging and leave him behind).

In the pop-psych world, so much is made of authenticity and real feelings. Well, in the real world, there is no way that children are going to derive anything positive from sharing the deep anxieties of their parents. I have four kids. And some pretty weird things have happenned in our house over the years. And believe me, the magic words for any child are: Everything is Allright. And human evolution has set things up in such a way, that if your child trusts you, it doesn't matter WHAT has happenned, that simple assurance from the all-powerful Daddy or Mommy, will REALLY make everything right in their little brains.

Heretic I may be, but the "exploration" of fear and anger, etc, in children is (in my experience) largely worthless and dangerous. What they need, is to be told that the bad is behind and the good is ahead. Tell them that. Do yur best to make it happen, and they will be OK. Even in the worst events, if they see you calm (or quickly return to calm) they will believe that someone has things covered and they will be just kids, as they are supposed to be.

And I hope this doesn't come as too much of a shock, but in my sci experience, the exact same thing is true of our spouses. We can wallow in the comforting sense of our own helplessness, but if we do, we will be treated by others as helpless, and that is definitely NOT what we want. Therefore, in exact opposition to the popular view (coincidentally in exact concordance with the traditional model) we must frequently lie through our teeth about what we feel and what we think we can do. That is the only way to reassure the people who need to depend on us that the CAN depend on us (which is absolutely crucial if we are to function as fully adult members of society) and according to the old maxim "fake it until you make it", this is also the way to grow into a self-created personhood limited only by our imagination and resolve.

Of course we have "feelings". For the first year or two, I don't think a day went by without me shedding tears. But there can be no investment in those feelings. There can be no masturbation of despair. For the young. For the able. For those who have never sufferred or loved, it is natural to read the tear-jerking novels that introduce them to feelings which can be as sweet as they are bitter. Last night I read the last few chapters of Jane Eyre, where Jane comes back to nurse the blind and crippled Rochester. (now there is a truly extraordinary masterpiece of a young girl's emotional finger passing!) It's online BTW. But for those of us who are in the real line of emotional fire, there is no need for invented drama. And for us, the moments of weakness, while accepted, cannot be indulged in as a shared or solitary vice. On the contrary, they must be surmounted (if we are able), and alas, often dissimulated.

A woman who has accepted as an article of faith that she can only love a "sensitive" man, will be surprized to recognize in herself the grip of panic when her husband appears to be losing his control in the face of the REALITY (as opposed to the mere fantasy) of adversity. And she will be gratefully relieved should he show her the volontary ability to restablish his effective self-mastery.

And of course the same applies to the female spouse. YOU might doubt of your ability to persevere. But what do you think that information would do to HIS confidence? Sure you can both agree that the future is hidden, that no one can control all ends, that you can only do your best, etc. but then you will both hurriedly add that right NOW everything is fine, and that you see no reason why the future will not be even better. And you will feel good. You will both agree. But when you are alone, you will doubt. And you will combat those doubts. And you will satisfy yourself, as best you may, that you have vanquished those doubts. And when you are with the other you will not mention them. They do not exist.

When we speak to children the concealment of doubt is obvious and natural to most people.

When we speak to a spouse, it should be the same thing, with the only difference that we must understand that the spouse is using the same discretion with us. WE must accept that the assurances of the other are in fact the affirmation only of WILL, not of known ability. And we must, if we choose to proceed, be prepared to invest in the stated will of our partner, having faith in his (or her) capacity to hold true, and be willing ourselves to suffer the fruits of disappointment should they (or we) fail.

But failure is never envisaged openly, in any but the most theoretical sense.

Yes, the doubt should be admnitted as a theoretical possibility (the spouse is not an idiot afterall), but the absolute rock hard confidence should always be claimed and affirmed as the reality, EXCEPT (and there has to be an exception) in an admitted Moment of Weakness, which is authentic, but only occaisional, limited in time, and immediately repudiated. As a matter of fact, while always avoided if possible, the inevitable Moment of Weakness, if correctly handled, can actually heighten the image of character and resolve which we choose to project.

But you instinctively know all of this. You have already begun your course of dissimulation with that simple statement...

Quote

We feel emotionally fine to work through this and to be good parents to her.

As far as the outside world is concerned, the parents, sisters, sister-in-laws, ergotherapists, psychologists, social case workers and child welfare advocates, your line will always be UNWAVERING: We Can Do This. Admit your human failing in the abstract, but admit to no specific deficit. Return always to your statement of confidence and faith. Keep it simple. Keep it smooth. Allow no rough edges to provide a purchase for the cult-like theories of a recently graduated youngster to infirm your abilities. If neccesary, pretend you are too STUPID for the operation of their methods. heh, heh.

Of course you may doubt alone. Your husband will doubt alone. You will conceal your doubts. But together you will convince yourselves that you CAN and that the hidden doubts are groundless. And from that point you will present a united front to the world.

I know that this method is out of popular favor. However, I can assure you from personal experience that it is extremely powerful.

If the seams begin to split apart, then you will still have plenty of opporunity to see psychologists who will provide you with the material to rationalize the decisions you have already made.

But until then, there is no benefit at all in investing in those jusifications for failure.

*Wow. What a rant. Gordon has his feet firmly planted in the wrong century.*

Well, it has worked for me.

BTW I look forward to talking more about the kid thing. I was not a natural home Dad. But I grew into it as something extremely satisfying which I turned out to be able to do. Twelve years of diapers. But I will leave that story for later.

Best,

Gordon

[gordonr]

qbounce, on Jan 2 2010, 06:28 PM, said:

jscott,
In Stefs first post, it says clear as day that it's getting hard on the 3 year old daughter also. Anyway, project all you want on here. I think you "got it" a little closer than you (or others here) think!

Q,

Yes, it is starting to look like I am out to lunch on this one.

Perhaps some of what I said will still be useful even if wrongly directed.

-G

[jscott92064]

gordonr, on Jan 2 2010, 08:53 PM, said:

qbounce, on Jan 2 2010, 06:28 PM, said:

jscott,
In Stefs first post, it says clear as day that it's getting hard on the 3 year old daughter also. Anyway, project all you want on here. I think you "got it" a little closer than you (or others here) think!

Q,

Yes, it is starting to look like I am out to lunch on this one.

Perhaps some of what I said will still be useful even if wrongly directed.

-G

I like what you wrote.

Let me read it a few times so I can digest it all.

Will respond later.

J

[snowqueeneh]

I just have to tell you this story about our 6 year old son Christian. It sort of fits in this whole direction this post took. Paul went to Christians Christmas concert. It was the first time he went to the school since his injury. I was pretty nervous about what the other kids would think, how Christian felt and so on. Long story short... Christian (he broke his arm a month ago so he has a cast) sat on Pauls lap and drove around the school calling his friends and saying "Look - I'm driving my Daddy. I broke my arm and he broke his spine!". All the parents were looking at them with this look of confusion. He was so proud and they were so shocked lmao. It was priceless. Things will become "normal" in time. Wether you stay together or not - acceptance & adjustment will happen. Time will take care of that. Patience will help, guilt will delay, but it will happen.

[jscott92064]

snowqueeneh, on Jan 3 2010, 04:52 AM, said:

I just have to tell you this story about our 6 year old son Christian. It sort of fits in this whole direction this post took. Paul went to Christians Christmas concert. It was the first time he went to the school since his injury. I was pretty nervous about what the other kids would think, how Christian felt and so on. Long story short... Christian (he broke his arm a month ago so he has a cast) sat on Pauls lap and drove around the school calling his friends and saying "Look - I'm driving my Daddy. I broke my arm and he broke his spine!". All the parents were looking at them with this look of confusion. He was so proud and they were so shocked lmao. It was priceless. Things will become "normal" in time. Wether you stay together or not - acceptance & adjustment will happen. Time will take care of that. Patience will help, guilt will delay, but it will happen.

Thanks for sharing. That's a great story!

Our daughter has decided to invite her dad to her classroom so he and she can answer questions other kids may have about his new body. My husband is very active at her school and this is a good way to reintroduce him - we think. Let's her take control over the situation. (In 4th grade --probably any 4th grade --you've got your mix of kids who gossip and tease alot.)

She's feeling much better now that he is moving around in his wheelchair. The first few weeks he had a spinal headache and he had to lay flat in bed.

Overall, I think she's learning a good life lesson in all of this --at a very young age and this could make her a better person because of it.

[gordonr]

Dave Bishopstone, on Dec 30 2009, 08:49 PM, said:

I guess in any good marriage, before a life changing event occurs, the couple work as a "team" discussing things and working things out together - when an SCI comes onto the scene, it does seem sometimes as though the SCI partner is assumed no longer to be a team member, decisions are taken alone and communication stops. SCI does not take away responsibility, nor the ability to be make decisions or reduce intellect.

Now more than ever the relationship you had forged pre SCI, that teamwork, where you talked openly about feelings and took joint decisions about the future is really vital - SCI is a life changing event without any doubt, adapting to the changes it brings is extremely hard for everyone closely involved -
Dave

Dave,

You must have been even more exposed to these pitfallls, considering that the sci in your case was your child.

As you say, sci does not take away either responsibiity or intellect.

But I would go one step farther. The Sci member of the team, assuming he or she is an adult, should be, in all matters pertaining to sci, not an equal team-member, but captain of the team.

Even the most trivial decisions, such as where the chair will be placed at table, should be open to debate, but the final say should always come from the person in the chair.

Phrases of the sort, "Oh no, you don't need that..." Or the inverse, "You definitely must have that..." have no weight, or should have no weight, if the person concerned feels otherwise.

Best Regards,

Gordon