TBI – The one thing that will rip up a family.

My Mother and Dad...So glad they are mine. They live in heaven how.

Your Family’s Life.  Is this your choice?

The choice is whether to have real communication and be alive with family

OR

To pretend there is communication and pretend your family is alive.  The majority rules.

death of old self

I NEVER THOUGHT THIS WOULD BE THE CHOICE MY LITTLE FAMILY WOULD MAKE – THAT I LOVED DEEPLY.
Why am I any different, thought?

 

A Post written by Jeffrey Sebell has made me do a lot of thinking.  And venting… like he does.  We are nothing special, just someone who has had something happen to us that wasn’t good, but we made the decision to not let it drown us.   It hasn’t in itself for me…. but I still struggle with “LOSS”.  Not of me, but of those I thought loved me.

Sayings

How Many Times Have We Tried?

I have made a decision.  Maybe not the best decision I’ve ever made, but one that I have been told must be addressed.  If others are too afraid to address them to me, then I will address them to myself, on my blog.  HONESTY is the only true freedom we have to get well.  None of this is said in malice, nor in anger. I will be tactful as I possibly can be.  EVERYTHING HAS BEEN ASKED ME ABOUT…. WHICH VALIDATES MY FEELINGS OF WHAT IS HAPPENING.

Once upon a time a woman who was perfect and had perfect children and a perfect husband had an auto accident.  They felt so bad for their mother, that they did all they could to help her recover.  They asked many questions, so they would know what to be expected, so therefore, they knew what was needed and was there for their father, also.

Because the mom and dad loved their children and spouses, they wanted to help them try to get off the old grind and get out of dodge.  It wouldn’t be easy; but we knew it was what God had asked.

Before this, they were blessed with a wonderful grandchild.  She was perfect in every way and still is…. as she enters her 13th year with hoopla.

Her children moved back, and live in the same large city.  They are over about once every 2 weeks because they enjoy coming and so do the grandchildren.  She loves it and it keeps her from being depressed.  The couples can go out to eat if we are able to babysit…..And we can get two things done…. give parents a break and then have a happy day being with the grandchildren.

Although, we know they are not responsible for our happiness and we aren’t responsible for theirs – they still wanted to come visit often.  Calling and visiting was something that happened many times and was not treated like a duty.  They understood the diagnosis and the physical and mental stress it caused.  They understood “families support each other” and that is a great bond.  No only that – but teaches the children how to care for THEIR OWN parents.

WHOOOOAAAAAAAAAHHHHH!  What is your problem?

YOU DO NOT THINK I’M TELLING THE TRUTH? 

SO…. you want the truth because this doesn’t sound like the truth?  But, I don’t want to tell the truth.  Yes, I know I can not heal unless the truth is spoken about.  But, no one believes me, only the doctors because they have seen and heard what has happened.  They have seen the horrific tears.  This part sounds so nice and it’s a part that I really wish was true…. so can’t I have it for just a moment”?

OKAY – FINE!   If honest is what you want, then honest is what you can have.  But do not bang on my door, because I’m having a hard time between honesty and “non-honesty”.

1.  Do I feel loved?  NO.

2.  Is there something that could be done to change that thought in your mind? 

No.  It is what it is.  But if you want something, then I suppose acting like I exist, and have a few disabilities and not hold me responsible for everything that I do that is wrong, would be a great start.  But, Not Interested.

4.  What do you miss the most?
I miss my brain, I miss my husband, I miss my children, I miss people, I miss my friends, I miss……everything.

5.  Did these people move away?  No, they are still at the same place, only their attitude has moved.  I understand myself more than they do as I do research.  I try to explain some of what I have discovered as I’m so excited and need someone to bounce things off of.  They are not interested, their attitude makes it cry obviously.  I raised them to be loving people, and they are.  Their church friends are first and we are second.  So there’s never seconds.

6.  I looked up what each of you believe somewhat, and isn’t that not biblical?  No, it isn’t. But, I’ve learned over the years, that there are two sides to every story.  If I can not be pleased in my care, then everyone is miserable that helps.  Resentment sets in.  That was one thing I wanted to be…. easy to take care for.  But, just as my fathers wish was the same, with Alzheimer’s, he was still easy, but just harder at times.  We didn’t blame him, we did the best for him.  TBI is a lot the same.  It is very frustrating.  But it is still something I can’t help, yet there is an attitude of Judgments that makes me do even MORE stupid things.  It has spread to other family members and to our friends.  I have a few dear friends who have stuck through thick and thin and tell me it has taught them so much.

7.  What do you do that upsets them?  I’m not sure, but I know I say things that I don’t mean…. it comes out wrong, the wording isn’t right, etc…  But I’m clueless.  Instead of asking “Mom, what did you mean by that”? Either things are quiet, or I’m reprimanded as a toddler.  I dread it.  I dread being a toddler.  I’ve asked for help in things that I don’t want to get into bad habits.  It easy and it costs nothing.  Yet it is ignored, until a time when I least suspect and BAM – the little child must go to her room.

8.  Could you speak to them about your feelings?  Wellll….. I doubt they would like it, and we tried and was turned down a couple of years ago.  Things were so bad and we needed help.  Even though there was no knowledge of WHAT, it was decided by some that a meeting wasn’t necessary.   I am alive today because of a PA who would not listen to the doctor….and called in the older, much experienced one.  I’m not here because my family was concerned enough to stay and try to figure out what I should do.  It wasn’t a shock to us, but I could see the deep hurt in my husbands eyes.  He refuses to ask for help unless there is not choice.

I realize that families are not doctors, but the answer was in a booklet I was carrying around but couldn’t get it out…. I think they may have possibly gotten some answers by talking to us.

That experience was torture.  I had already lived in torture for 13 years, and now this was unbearable….. beyond unbearable.  The trauma is so bad, and has effected both of us, that I will never tell how bad it is.  Its terribly painful, and only one doctor is aware and is trying to help.  Her greatest disappointment is knowing if we had a supportive family that gave some pats on the back instead of darts in the heart, we wouldn’t be dealing with this.  And what’s worse, as I say over and over…. it way to common.  And we are probably some of the fortunate ones.  I would say we are good friends who try to get each other through the day, because there is too much for two tired, depressed, overwhelmed and trying to make life good with our family…. there is nothing left.  To think of the years, the prime years that have been wasted, is enough to send me crying.  This sounds like a cop out… but you see – I’m not blaming anyone.  We all were in shock, in grief, and in DENIAL.  I tried the best I could to keep our heads above water, but gave up.  I can’t think about things too much, as the anger of being “used” by the ones I thought really loved us and were in the family as a partner – isn’t.  And that is what has gotten my husband down….  The wasted money to help, the wasted time we didn’t always have it to give, but we did.  Because we love them.  It never crossed our mind that a day would come when we were just acquaintances.  You know, most want their children to be around their grandparents.  They go the extra mile to make it happen.  I wonder what really goes on in those little hearts when they tell me they want to come so bad, they want to help and are worried, “but mom and dad are busy”.  I hope it doesn’t come back and our children have no help because of the example.  My granddaughter once was so disappointed when they went to something nearby where we lived.  She is a silent one…will NOT rock the boat.  A dear child.  But her eyes lite up when she said “you could have gone with us and I would have pushed you in your wheelchair”.  I say nothing. 

I suppose the worst is seeing the deep hurt in my husbands eyes.  Unless you have lived this life, reality is not there.  Which is pretty common with anything.  But isn’t this where devine love comes into play?  He finally told me, which was shocking, that this experience had done something’s that he was struggling with.  His faith had been shaken to the core, because again, those that he loved and gave his all for, have turned their back.  He was trying to keep his eyes above, to remember God will never forsake.

Charles

My husband of 38 years and my caregiver.

Sad part is, we are both getting so weary.  The load of others we are responsible for, and we expect to be a help….but you know that story too.

I am really not comfortable  talking like this, because it’s not right for me to feel this way.  I don’t want to be selfish, but I’m tired.  My body has run it’s course –  trying to play the role expected….yet not respected.

This is a bit personal…. but has suicide ever crossed your mind?  Oh, YES.  Of COURSE!  There are times I cry because I don’t have anyone to call who cares or who can come.  I believe my son would come, but I do not want to be a burden…. we are too young to start that.  He has come and spent a portion of a day, which was nice.  But no…. I would never   call and say I needed someone because I was struggling with suicide.  My daughter would most likely call me names “trying to get attention”, “it’s all about me”, etc…  That would make it worse, so it is fearful of making sure I am with the right person.

9.  Would it help if your husband was around?  I like for him to be here… we have a good friendship.  But as far as feeling he would listen, or know what to do…. NO.  He’s unsure what to do in this kind of situation.  And he doesn’t recognize EMOTIONAL SUFFERING.  Or he may, but can’t talk about it. He is struggling too.  He does have his own.  I’m the blame,  so I just take it.  It keeps the peace right now.  He is a wonderful caregiver, but as most caregivers, they have a lot going with their life. I insist he has something outside of our home to participate in.  He enjoys our community Choir that puts on programs.  Tuesdays are his night to mingle with people and out of the house.  It is necessary, not optional.

10.  What do you hear a lot?  JUST BE YOURSELF, Quite worrying.

It’s hard to be yourself when it seems as though you always have to explain why you do the things you do

When you are a TBI survivor you feel as though you stick out like a sore thumb because of the “quirks” you exhibit. We have a need to explain ourselves, in what is a battle to fit in and be accepted. Feeling uncomfortable in our own skin, we want to communicate to people why we do the things we do, as well as make sure others know that, “I was not always like this.”

And I’m thankful for a doctor who completely GETS IT!

It’s infuriating, feeling as though you are not being taken seriously, or are being judged when others can’t know the full story.  There is just so much they don’t know about, and we feel it is our obligation to let them know, yet we don’t.

Minor “TBI episodes” seem major to us, and they always seem to call for justification.  There are precious few situations where we feel as though we can just be ourselves without explaining and justifying ourselves and our actions to others.  Some say “you don’t NEED to justify”.  True.  But if they had lived through the rumors we have, they would want to explain….the things said just about took us under. Friends and family.

The issues are in our brain, invisible to everyone, but very, very real to us. How do we get someone to understand when they can’t see us for what we are? Unfortunately, there is no way to communicate our reality except through words, and the vicious cycle begins where the words we use don’t seem to matter. Then we get excited, and then more emotional we get about it, the less effective we are.

Because of this, and because of the general state of affairs we find ourselves in, a feeling of vulnerability hovers over us and follows us like a cloud. It’s just something we can’t escape; a general feeling of doubt and of not living up to our own expectations, never mind anyone else’s. That doubt makes us feel a little less than human, and makes us feel as though we are not on equal footing with the other people we come across.

Not only can’t you be like everyone else, you can’t get others to understand why.

Stop trying to make sense of what we feel is necessary!  Until you have walked in our
shoes.  Just tonight, a man who’s wife has a chronic illness.  Something was said, and he said “no one can understand unless they really try, and then, they will still not understand.”  Personally, I’d take the trying. 

So now, my child is going to teach others to communicate and have close relationships with their families.  This has left her family in shock.  It was mentioned she had found her family in her church.  Funny, but all that was hated about and all what was seen in churches is now okay.  The doctor who worked hard to get me back on top after a terrible breakdown with seizures – crying so hard because I wanted my daughter back.  He gently asked me “what are you going to do about this”?  Sadly, nothing.  I’ve tried, and I can’t communicate well, so things end up very bad and I feel I’m sitting in a corner reprimanded.  It does feel good.  I miss her, but I’ve been replaced.  She loves me in her own way, and I MUST LEARN to accept that. BUT, we all must love God first. That isn’t the issue.

I would imagine most would understand how it would feel when you have tried to be a mother/daddy to let go, to not pester, to give positive feedback, and sometimes a little constructive advice.  But I was raised that when you were married, things changed and there was more of a adult closeness that one wouldn’t ever want to change.

It’s not her fault, it’s not mine.  She was afraid I’d not love her enough because of actions they did that they knew was disappointing.  She is of age – she can make her own choices.  Yes, I may be disappointed, but my love goes beyond that.  It holds no conditions.

We have lost 14 –  16 years of communication.  Something we will never get back.  I’m weary of trying, I’m tired.  I’ve opened my arms, but now, the spirit that comes is I’m not good enough.  So, what can I say?  Lack of communication and much assumptions have put another family to death.  All have to be willing to resurrect it.  I understand “being busy”.  But, when their is a deep love, some how, some way, you will make it happen, because love over comes all.  A mother’s love is deep, and when it’s lost there is a natural side of live that has no meaning in living.  

It will change, it already IS changing.  I won’t think of the past by trying hard. But thinking of the future and hoping……

 

  •    (he wrote an article that is so touching and so normal in a chronic’s life. Some is repeated along with my thoughts

    A Bit of my RESPONSE:

  • Thank you. Thank you! For the bottom of my heart, and the lack of words I don’t possess, I can’t think you enough. This is how I feel. This is what I get in trouble for feeling this way. I KNOW I’m normal in my feelings, but I can’t get anyone else to agree. I get so weary of those who can only imagine what it is like through their own experience. It is so frustrating, and then to hear…. “I do that all the time”. If you did…. then you wouldn’t make light of it because TBI isn’t a ball game. It is a living Hades. I have one person who can relate. Although spouses can be a big fan, in reality, they still can’t relate. Sometimes the depression is overwhelming, and I feel I can’t keep living like this the rest of my life. If I was normal then I would be having my kids over and seeing the grandkids and be involved in their lives. Instead, I’m a spectator, not allowed to get too close I’m scared to talk, scared to call, because I will do something I’m clueless about and be guilty as charged. When I see families who come together and are supportive, they are actually doing more… they are saving their parents marriage as exhaustion runs wild. We smile, as parents do, and keep doing what we are supposed to… and that includes being misunderstood. Some days I can hardly take it and then I pull up my bootstraps and start trying again. Excuse me, I’m venting a bit. I am told “you can’t tell” and so on (which I’m glad, but if they were around a while….). But why can there be some mercy and let me have a fun day with a family member I love? Why are my children willing to come close enough to have fun, but not to drop by and see us? They tell us how grateful they are for all we have done…. which is nice to hear. But as someone who has gone through a traumatic experience, and had rebellious teens to love, why have I failed? When something traumatic happens, we need to talk. Once we FEEL we have been heard…. then we’re done. In 16 years, I don’t feel I have ever been heard by my children or husband. And they are the greatest, they just have their own personal ideas. They would just die if they walked in my shoes for a bit and realized how silly it sounds when they “give advice”. So far, I don’t feel I have been asked to speak my thoughts, fears and needs. I am TOLD what they are and what I should do. Does anyone know if we could change ourselves we would be the first to do it right away? Surely they don’t think we like ourselves anymore than they do. In fact, we see ourselves as “damaged goods”, “not worthy of love”, and “one big mistake”. Then to have it validated is awful. When I try to talk about our non-relationship, it doesn’t go well, because that’s when the old TBI come out real well. And you would know it is NOT an excuse.

    We all know, as you said, TBI affects the whole family. And when we all aren’t knowledgeable then I wonder why the doctor can’t help us out a bit. They acknowledge they understand and they could help, but that’s as far as it goes.

    This may sound angry, but it’s not. It is very sad and tears always fall. To think that TBI took my close family and shut the door is almost more than I can bear. I have accepted who I am, but when I am “reprimanded and lectured” about these issues, it almost sends me over the top. It does mentally, but physically…. I do all I can to stay.

    For x-mas, or birthday or any day, all I want is a hug from my daughter and being friends again. To accept me how I am and skip the lectures. All I want is to have my wonderful son in law back – who is a wonderful person and cared for his family and used to love us a lot. I am sure he loves us even when the “bank” stopped! 🙂 All I want is my son to let me be… to love me as I am and not to get on to me and forget to give some positive feedback. And I would love to have my daughter in law talk to me like a dear one would. She loves us and tells us so… but I long to have some kind of relationship and have always looked forward to being a mother in law. And all I want from my husband is to take a moment and let me talk. To not low off the fears and tears. To let me be me and not try to fi it. To still see me as a wife who has a lot of love for him and is still the same…. just a bit different. I long for love. Not the love of friends, but the love of a husband.

    I have had 3 breakdowns, which I don’t like to tell. It is very hard to live up to expectations that are impossible. Not when you look fine. I wish when mistakes happened, they could just be like water off of a duck. It is humiliating to be reprimanded like a kindergartener. And it’s not romantic at all.

    You brought out so many things that bother you, yet I have found out I’m helpless in getting anyone to sit and really listen with compassion. So I have to let go. I’m trying hard, but sometimes wonder if I’m even loved for who I am now.

    As you said…. this isn’t my fault and it isn’t their fault. It is the fault of a 16 year old driver who was very irresponsible. He took Drivers Ed so it wouldn’t be on his record. I did nothing, yet it will be on my “record” for life. When my grandchildren say they want to come help because they love me, I melt. They know the answer is no, just like I do. “It’s not convenient”. I completely understand.

    This isn’t convenient for me either.

     

  • chatcat76.wordpress.com Trying to come to terms with all that has happened. Maybe in 20 years!
  • Your site is going to be very helpful!   (written by a physician on linked in)