Reeve Foundation Paralysis Community

Hi: Now that your son is 18, he is considered a house hold of his own and might qualify for more programs than he did when he was under 18. Depending on your state, there might be some assistance in the SCHIP program or in the Developmental Disabilities program.  Many states are making deep cuts so money is tight but I am willing to talk to you and try to help you navigate the system.
Some states even have programs similar to what you mentioned. Your son would be allocated a budget and he would pick, hire, train and manage his care givers.  Please know that I say this at the disadvantage of not knowing your home state. Call the Reeve Foundation at 800-539-7309 and as for me and I will see how I might be able to assist.
I hope to hear from you soon.

---

Thank you,

Every day I wake up is a good one.
phf 59-08

So the big question that keeps coming up on this thread is: "how do we cope with ongoing distress and suffering?" And it doesn't matter whether the distress is losing an identity, losing freedom, losing love or losing function, because all of our suffering involves loss. We've all lost something precious, we all fear a dark and relentless future, and few of us see any possibility for change.
Now what?
I've often talked about how I contemplated suicide after my accident but promised my loved ones I would give it a couple of years. And when the time came, I had a very private conversation with either my higher power or my deepest truth, probably both.
I said that I would live with this if I could have hoped that one day I would walk. And the voice said "no hope, this is the life you have, live with it or don't." Is that stark reality, my desires that smaller "at least gives me hope that I won't be this sick in the future", I said.
Same answer: no hope -- this is your life live with it or don't. I sat alone in my room for a very long time knowing I have just faced a very raw and painful truth about my life and was given a very stark choice -- live the life you have or don't.
I cried for a long time that day and for many days thereafter. Of course I chose life because that's what we humans do given the choice.
In hindsight, I am thankful for that day and wish everyone could have a day like that -- a day in which we choose to live the life we have rather than feel it has been handed to us and we are stuck.
A few years ago I worked with a 35 year old woman who had four children and stage IV metastatic breast cancer. At first she was terrified and angry. Then she felt self-pity. Then she felt grief for her children.
And then something happened. She realized that she had everything she wanted right then and wouldn't have it very long. She called me on the telephone one spring afternoon. Although she was quite frail, friends helped her and her children get to the beach in Ocean City New Jersey. It was a cool day and she said she was covered with blankets watching her children play in the sand. I could almost see her face when she said: "Dan, I think this is the best day of my entire life." She died several days later.
I love when skillmasters said she stopped fighting. Fighting can't be constructive and help us move mountains when they need to be moved. But when we fight with the life we have, we fight a losing battle.
Listen to the Golden girls, listen to the breeze outside, listen to your favorite music, listen to the beating of your heart, the longing in your soul; the sounds of your life. It only takes a few seconds.
And if you have a few seconds after that, do all of those same things with every one of your senses. And if you do that and find comfort or delight or rest, keep in mind that this moment is the truth of your life also.
Please take care
Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Thanks Dr. Gottlieb, I think we are getting closer to having a "serious" discussion. We have had more and more conversations about things lately that seem to be at a totally different level. I encouraged him this week to find just one activity that he could do on his own, whether it was a way to scratch his nose or find a way to set a cup so he could drink when he wanted....or anything he wanted and when he did, I would give him one half hour head message. He says "ah just give me that head message and maybe I'll figure something out later" with a half cocked grin on his face. I feel so close to him, yet want so much for him that I "think" can happen but don't know if it is my wishful thinking. He has such limited movement, maybe I am hoping for too much. I don't know. I also keep telling him that when I get the ramp built on my new house and get moved in, he is coming to spend the day with me. No aid, just the two of us and we are having that long over due discussion. Denise

Denise,
I'm not so sure words are the vehicle of communication with your grandson, I think it's love. And the kind of love you too feel for each other is beyond words. It's your feeling of closeness to him, it's his half cocked grin on his face. You already have wonderful communication and the words are secondary.
I know, I know you want something to happen beyond love. But nothing happens without love, it is the nutrient that enables anything to grow. Growth is also requires compassion. You must do your best to understand the experience of a teenage boy living life your grandson is living. You might not get there, but try to fathom what it's like to live inside of his skin. Ask your questions out of curiosity and a heartfelt desire to understand, to feel. And then under him by doing the same for him -- open your heart and tell him about your closeness, your wishes, your fears and your devotion.
With these ingredients, things will grow, people will grow and so will their spirits. We don't always know what's growth will look like, but with the right ingredients it will happen.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

My boyfriend has only been paralyzed for 7  months and until maybe a week ago i started feeling this way...is it awful of me to be feeling this way. Yes i understand he is only my boyfriend and that i could if i wanted to just leave him....but a long time ago i decided this was the man i was going to marry... and i still feel this way. But i have started thinking about everything...how my life is going to be....me not only caring for children but him as well. Am i going to have to sacrifice everything sex, sleep, how many children i have, the type of house i want where i live, my career??? I do love him am in love with him but this is not how i saw my life with him....Maybe its frustration that leads me to think this way...i cant share these thoughts and feelings with family or friends because they have absolutetly no clue and i wont dare share them with him because i do not want him to think i am being selfish because i can walk i can go out and do whatever i choose.....because he wont see it as me choosing him regardless if he walks or not....before i read everything on here i thought i was being awful for thinking all these things but i know that i am not... thank you for that

---

Scarlet

"We could never learn to be brave and patient if there were only joy in the world."

Scontr21:

First let me say welcome to the forums. I am glad you found this place and I hope that you will post often. I think the simple answer to your question is yes you will sacrifice many of the things you mentioned, but it’s that way in any relationship only a little more intense in a relationship like this. What level of injury does your bf have?

This week I did this filmed interview mostly about being a wife and caregiver of an SCI spouse. The interviewer asked me how this had changed my life. What I told her is what I will tell you. Nearly every way it has changed my husband’s, it has also changed mine. I too have lost my freedom and my dreams for the life we had planned. All spontaneity in my life is gone. I have to plan how, when and by whom each detail of life will happen. I feel isolated, alone, not understood, and different from most wives. There are some days my husband wishes he had not survived his injures and plenty of days I wish I had not survived our accident either. It’s not about walking, it’s about loss and there is plenty of loss on both sides of the wheelchair.

The interviewer also asked me what I wanted people to understand about SCI. I told her I wanted people to know that SCI doesn’t happen to just the person with the broken neck. It happens to the wife, the kids, the siblings and the parents. It’s a game changer for everyone involved. My husband is a C3-C4 complete quad. He is 100% dependant on someone for everything in his life. I also told her that when you see someone like my husband, there is always someone standing in the shadows making his life happen. In our case, that’s me, his wife. But we are the invisible ones, and sometimes we’re suffering too.

Don’t feel guilty that you can walk and don’t feel awful that you have these feelings. Believe me that is no way to begin a life together with anyone. I hope that at some point you will be able to discuss your feelings with your bf. Sometimes when you don’t know what to do, the best thing to do is to do nothing. Keep doing what you are doing now and give yourself some time to sort out your thoughts.

That’s just my advice from a wife of 17 years 8 of which have been living with SCI. I’m sure Dan can offer you some thoughts too. He’s pretty good at that.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Thanks again Dr. Gottlieb. Despite my husband being ill for so many years, nothing has been as heart wrenching as dealing with Kyle's injury and my lack of ability to fix it.
In praying, I wanted to say "praise God" and yet my heart hurt and I felt nauseated when I said that. Realizing my emotions run so much deeper than realized, along with anger and resentment. I can't imagine acceptance yet. 18 months hasn't been long enough I guess. I just want to pick him up out of that chair and make it better. Part of the nurse in me and part of being his Grandma.
I'll work with what I can and accept that spending good time with him maybe all that I can do. Life has to get better for him and all of us, even if as acceptance.
Denise

Dear Trish,

 

I'am a new member however, I have been reading your posting for a long time now. I will like to respond to this one as the beginning to my participation. I am so very moved by your thoughts; I can relate too many of them, one of my favorite is the one about the "penny".  I have being my husband's loving wife for the last 25 years and his care giver for the last 18 months since the day when life changed us forever. As I'm new on this posting, I will only add this thought. Yes, CSI steels from not only the person suffering from CSI but, also from all of us who loved them and care for them. My hope is that we can all find joy with one another and specially with our loves ones in the simple things that bring us together and bonds us so deeply.  Regards, Ivonne  

 

 

 

         

---

"Life is a box of chocolates"

Trish,
I hope you notice how supportive you are from your unique position of experience. I am so glad to read the posts of new members to the forum and your welcoming responses. Have you eveer considered starting a caregiver's blog on the CDRF site? Hope things are going OK for you guys now. I remember how hectic the end of each school year was in my home when my girls were here.

I wanted to be certain to post a comment while I am able to do so. I'm having some trouble with my right shoulder & just noted a passing thought today about needing to pay attention to the discomfort I'm feeling. My right hand, arm, & shoulder are all that keep me from requiring caregivers & home health. Felt a moment of fear as the thought passed. Positive thoughts & prayers would certainly be welcome right now!
I know everything will be OK.

I also hope you guys know that I, & those you care for, appreciate each of you struggling with the suffering that each caregiver goes through daily, even though we, as care recipients, are not always able to express . We get caught up in our own stuff & forget to say thank you.

Take care & here's to sanity in the midst of the pain. (However, I don't know if sanity is all it's cracked up to be on some days. ) ;)

I am a nervous wreck. I have a nephew that is graduating from high school in a town about a 5 hour drive from where I live. My husband does not want to make the trip with me, but if I don't go I will miss a family reunion of sorts. I had made up my mind that I would stay home. Then I was getting pressure from other family members to make the trip and take some time for myself. Of course, I was torn, but my husband encouraged me to go. I have found a nurse to come in for 36 hours. I can drive down spend the night, go to the graduation ceremony, attend the barbeque, and drive back home in that time frame. This is the first time I will be leaving my husband since his accident over 3 years ago. Again, I am a wreck. I cannot even think about it without crying. I think I may not be ready to leave. Does anyone have any advice for me?

Valola,
Here is my advice:

Go and have fun. I understand you are nervous, anxious, and worried, but he has said to go, you want to go, you need to go so do it.

I know it is easy for me to type these words. But I have been in your shoes and in your dilemma. I have done both things; stayed home and was very sad I was missing out on my life and family, and I have also made arrangements to go. The first time was hard, but I had fun and came home to find he could live without me for a day or two.

When you totally give up your life and needs for someone else, it makes for an unhappy relationship. Eventually you will get burned out, become resentful of the limitations he puts on you, and feel like you have lost your very identity. It’s not the best way to live.

I’m not suggesting that you do anything other than what you have planned. You have competent care to cover his needs. You’ve thought of him, so now think of yourself. That is what respite is all about. Yes indeed, you do deserve a break every once in a while. Go and then let us know what fun you had.

Rbf:
Thanks for your kind comments. School is wrapping up for the kids then I expect they will start staying up late and sleeping in late. Teenagers! So sorry to hear about your shoulder. Hope it starts feeling better soon. Positive thoughts and prayers are on the way.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Viola,
I completely agree with Trish. Your life is difficult as is your husband's. Take whatever opportunity you can to experience joy.

I remember in the early years after my accident and I was so totally dependent on my wife. I needed her badly and I hated that she was suffering and sacrificing her life.

When she had an opportunity to go away for the weekend, I insisted she go despite the fact that I was so scared to be with a stranger. She left and after some hours of anxiety and guilt, she had a good time. And I., after some hours of anxiety, found that I did okay.

At the end of the weekend, I felt proud of myself and a little more independent. I also felt that finally, finally I was able to do something for my wife.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

denise,

I often feel the same way about my grandson who was diagnosed on the autism spectrum when he was 18 months old. And now that he is 10, he is beginning to realize his social deficits and feels great anxiety and confusion about them. My heart breaks for him and I wish for him the same thing I wished for my daughters -- nothing but happiness.

And yet, deep down I know Sam will be just fine. I know this child's heart and I know his soul. This is a child who, despite his anxiety about my wheelchair when he was a baby, insisted on sitting on my lap as I wept at my father's funeral. This is a child who spend hours trying to figure out a way for me to get on the beach and my wheelchair so we could play together.

Our children (and grandchildren) need our love and guidance. But they need our faith more than anything. Our faith in their resilience, their creativity and their life force.
Not easy, but like I know my grandson from the inside out, I am sure you could say the same about yours.

My most recent book is called "the wisdom of Sam" and how Sam has become a teacher for me. The same will happen between you and your grandson if you allow it to.

Dan

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

scontr21

You have been given some sage advice by Trish, and now you have your own sense of morality and ethics to struggle with. Not to mention the longings of your heart. So here is my advice:
do nothing. And do that for a while. Make a commitment not to decide anything right now.
Just like he has been traumatized, so have you. So let yourself experience his paralysis, your emotions and the longings of your heart. You will notice a wide range of emotions from anger, to love, to terror, to guilt, to selfishness and back again.

And most of all, please please care for yourself with great love and compassion

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

Hi Valola,
I think you've received a lot of good advice. Ultimately you need to feel comfortable, but reading your blog makes me feel like it would be the best thing for you & your husband for you to go. It would probably relieve him of some guilt, who wouldn't feel bad about such a huge expectation (unintentional of course) of their loved one! It's also natural for you and him to feel nervous.
My husband was injured 5 years ago, I'm 35 & we have 4 children, I have since left for two overnights and about 3 "girls night outs"
It's therapuetic for both of us! Leave it in God's hands, everything will be fine!
Julie