Update: Pray for Dom- Dom has passed, His Services, Thank You- Page 48 post 949

If it were me I would get my own counseling of how to deal with it. Some one can tell you what to focus on and what not to when talking to the family. Hopefully in time they will want their own counseling of how to cope with it. If nothing else you will learn to deal with it. I still see hope in it all.:hug:
 
Teresa,

Thank you for your kind words. I have parents who are 1 in 10 billion. At the time of my accident, they lived 4 hours away by car. I know that I would not have recovered as much without their love and support.

Sadly, 4-1/2 months after the accident, my DH of 16 years took his own life. I've accepted that the only answer I'll get to that, is that there really no answer to "why".

My parents have always been there for me, but after these 2 forever life alterating events, no words can describe how amazing they were.

My mom stayed with me for 10 weeks after DH passed. And for the next 2-1/2 years they drove down every 2-3 weeks and stayed 10 days each time.

They did everything they could to support and help me. Including meeting every person on my medical team, coming to appointments with me (to learn as much as they could), actively participating in my psychology rehab.
That was the most difficult for them as I had a fantastic Dr who specialized in treating TBI patients. He didn't tell my parents what they wanted to hear, he told them what they needed to hear. And he didn't shy away from telling me and/or them if our behavior wasn't in my best interest. Didn't sugarcoat things, every visit reiterating that I was making an amazing recovery for the extent of my injuries...but the "old" Carolyn was never coming back and we all had to accept it. I was still Carolyn, just Carolyn 2.0, as he phrased it.

They have tried their best, but I can see how much it hurts them to watch me struggle with what used to be simple tasks for me. I admire them so much for letting me struggle when it would be much quicker and easier for one of them to do it.

Sadly, my dad passed last May. I thank God that I'm recovered enough to be there for mom and help her. It was very sudden and after 60 years together, she was almost destroyed. I spent much time in Canada with her, and brought her to stay the winter in Florida with me.

I completely agree with the previous posts in going for counseling yourself. You're living this sad reality. A good therapist will help you in how to deal with Dom's parents, your own feelings of anger, frustration, helplessness, etc. I'm not pushing this, just speaking from very personal experience. You have to take care of yourself, that should be your priority. If you get sick, you'll be no help to anyone.

And, no matter what happens, therapy/counseling will help you. This has been such an emotional, exhausting, traumatic event for you. Just because you're not the one who was in that car doesn't mean it hasn't affected you tremendously.

Also, speaking from my experiences, many people fell out of my life because they didn't understand a brain injury. And, because it's an "invisible injury", many people don't believe it. And others just weren't willing to make any compromises to accommodate my new/current needs. I was, and still am, shocked at the number of people that just disappeared, most with no explanation.

I apologize for the long posts, I don't want nor am I going to hijack your thread and experience with this sad situation.

I wrote hoping to share my experiences in the hope of giving you some comfort and maybe explain something that hadn't either been brought up, or not explained properly. I sincerely hope I accomplished at least an iota's worth.

If you have any questions, anything, that you don't want to post publicly, please feel free to message me privately. I'm far from an expert, but I do have tons of up-close personal experience.

You and your husband have been amazing to/for Dom through all of this. Dom is lucky to have you. My sister, my only sibling, couldn't deal, and she removed herself from my life completely.

Huge, comforting hugs to you! :grouphug:
Carolyn
 


Thanks, guys. You are all amazing! It helps tremendously to just be able to say what I need to say out loud to people who aren't going to judge me. I mean, my husband and I talk about Dom all the time, and we can be honest with each other, thankfully, and are on the same page. I just feel so crappy when I say out loud that I wish Dom hadn't made it. I love him with all my heart, but I know he wouldn't want to live like this. He is only 27. He could be this way for 20 more years. I don't want him to suffer, and I don't want to see him suffer. If I could know that he is pain free, and comfortable, it would be much easier, but I don't know that. None of us do. I can't imagine it can be comfortable or painless to be in a contracted position 24/7 without the ability to even scratch your nose or reposition your head if your neck is cramped. He can't even tell someone or indicate that he is in pain or uncomfortable. I know it's all in God's hands, and he has a plan, and I'm okay with that. I'm not okay with a lot of the decisions Dom's mom is making. I feel she is making decisions for her well being, and not for Dom's. I don't have any control over that either. Carolyn, @2disneywego your words have been extremely helpful. What wonderful parents you have. I'm so sorry to hear about your dad's passing, and will keep your mom in my prayers, and you as well. All of you, my DIS friends. I'm also shocked and surprised at the people who have walked away. People I never thought in a million years would. :sad1:


:grouphug: We Disers will always be here. Take care.
 
Thank you for putting your thoughts into words. Goodness, it's so hard to make sense of it all and it's an impossible situation to wrap your head around. the "why's" are just so difficult to deal with.

You and your DH are so inspiring the way you have stood by and stood up for Dom. :grouphug:
 


@TeresaNJ, I don't pray but I wanted to reach out to you and give you, your husband and Dom a big giant cyber {{hug}}. You are amazing people.

You talked about the people who have walked away. You talked about how Dom's mom has been pushing away anyone who doesn't think there will be a miracle and Dom will recover. You have been moved out of the loop yourself because you don't toe the party line and you've read that she says people (including doctors!) who disagree with her delusions are "evil". You have no idea what she might have said to them so I wouldn't let their choice to not butt heads with her color your opinion of them. Like you, they have no say in Dom's care and no ability to make things better for him. Sometimes a person has to choose their own well being over that of someone they are not allowed to help.

I think it's perfectly natural to look at where Dom is now and wonder if it would have been better if he had died on the day of his accident. It's the job of the EMTs to revive people and not make life or death decisions. It's the job of the ER doctors to stabilize people and advise family when they believe there would be no quality of life. If it were one of my loved ones, I would have listened to the ER doctors. Your brother did not make that choice. I'm sure that all of the questions that have gone through your head also go through his, but it's so much worse. While Dom made deadly choices that caused the accident, your brother's choice to keep him alive put Dom in the situation he is in now. I cannot even begin to imagine the guilt he must feel. It must be eating him alive. Reading between the lines, it seems that your brother is one of the people who has walked away. Please be gentle with him. He may actually have no real choice.
 
Teresa,
I'm so glad that my words have been some help to you. And absolutely come here to share and vent, blow off some steam. It's so important for you to do that. You're right, this is a safe, judge-free zone, filled with caring people. Very few places like this.

Absolutely don't feel guilty about saying you wish Dom hadn't made it. That's a healthy, normal emotional response. I know that I would not want to be living like Dom.

Before I had my liver tumor removed, I went to the hospital and filled out every form stating those wishes. My DH was with me and signed also. That way, there was a plan of action in place in case something went wrong.

I actually did die after the operation while I was still in the ICU. Scared the bejeebers out of DH. All these alarms went off, and he said that staff literally came out of the walls, so many nurses and doctors appeared instantly. I was revived within 2 minutes, thank God. Especially as they wouldn't have been able to do chest compressions as it would have caused my liver to bleed out.

On a lighter note, it hurts like the dickens when someone rubs your breastbone with their knuckles. That's as I was coming back, and I swore like a sailor at that poor doctor. I was so embarrassed, I apologized later. He laughed and said it sounded great to him, it was the reaction he wanted, and he had heard much worse.

I hope that made you smile at least. :-)
 
Now I have a very important PSA for everyone, regardless of age, sex, current health.

Please make a living will that explicitly states your wishes in case of a situation such as Dom.

Check with your state's department of health about their "Advance Directive Registry". They should have one. Each state is part of the "U.S. Living Well Registry".
www.uslwr.com
P.O. Box 2789
Westfield, NJ. 07091

My family doctor gave me the forms and once I filled them out, the doctor's office filed them with the state.

This serves so many purposes.
It lists your current health, any existing conditions, medications, and all allergies, no matter how small.
You can assign a healthcare agent/proxy. This is specifically because of HIPPA. It allows the health care workers to discuss any and all matters medical, even if the proxy is not your next of kin. There's also an emergency contact listed.
In Vermont, this is taken very seriously and done well.

The advance directive is filed with the state and federal. Any medical person sees this immediately once your name and birth date are entered. Almost every where uses computer records now. So if you're unconscious all this information is right there.

Vermont gives you a new wallet card every year which reminds you to update your directive if anything has changed.

I moved to Florida 2 years ago and I haven't changed mine yet. I'm seeing a new family doctor next week, and I will ask him about this.

Even if Florida doesn't do it the same as Vermont, or not at all, I am still covered by my living will. It does all the same things, including assigning my HIPPA rights to my proxies.

Please, this is so important! I sincerely hope that at least some of the Dis will do this. It's not so much for yourself, it makes decisions easier for the people who put in a difficult situation.

I'll get off my soapbox now.

Teresa, thank you for allowing me to use your post to shine a light on a subject many people never want to think about.

And thanks to all the Dis people reading and supporting Teresa. It's so important and means so much to her, probably much more than you'll ever know.

This is such a great group of people. Okay, getting teary-eyed now, time to finish.:thanks::hug: :grouphug:
 
DH and I did this the week after we were married. Our lawyer was amazed as we were "so young", 25 and 30 respectively.

It was so important to us because neither of our parents had made wills, nor named guardians in case of the worst.

DH's mother finally made her will when she was diagnosed with stage 4 kidney cancer. Even then, she only signed it 2 days before she passed, and we had known for 6 months.

DH and I knew the surviving spouse would be wrecked, so we were proactive. Little did we know exactly how destroyed I would be 16 years later. But, having a good will did make some things easier.

Darn it, I'm back up on that soapbox again. I think you need to hide it from me Teresa. :rolleyes:
 
I want to send a group hug to all! I feel so Blessed to get to be part of this thread of love and support, growth to the Lord, and of course prayers for Dom and Teresa, too.

Teresa, as others so beautifully have said, when there are no words, no explanations or even anything, that is when God's Arms and Love are most around us! Jesus LOVES you and He is forever right beside you and Dom, of course, too. He gave us all one another and of course HIM! There are no easy anwers, I pray there were, but I also pray always my dear friend, you know there is love from all of us always and God, Who IS Love. God Bless You and PLEASE take care of yourself! P.S. I was so happy my package arrived and brought cheer. I'm not able to see the images on here but thank you for sharing them.

To, 2disneywego, thank you for sharing with us also!

Happy almost Wednesday and Good night tonight to all.
 
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Thanks, guys. You are all amazing! It helps tremendously to just be able to say what I need to say out loud to people who aren't going to judge me. I mean, my husband and I talk about Dom all the time, and we can be honest with each other, thankfully, and are on the same page. I just feel so crappy when I say out loud that I wish Dom hadn't made it. I love him with all my heart, but I know he wouldn't want to live like this. He is only 27. He could be this way for 20 more years. I don't want him to suffer, and I don't want to see him suffer. If I could know that he is pain free, and comfortable, it would be much easier, but I don't know that. None of us do. I can't imagine it can be comfortable or painless to be in a contracted position 24/7 without the ability to even scratch your nose or reposition your head if your neck is cramped. He can't even tell someone or indicate that he is in pain or uncomfortable. I know it's all in God's hands, and he has a plan, and I'm okay with that. I'm not okay with a lot of the decisions Dom's mom is making. I feel she is making decisions for her well being, and not for Dom's. I don't have any control over that either. Carolyn, @2disneywego your words have been extremely helpful. What wonderful parents you have. I'm so sorry to hear about your dad's passing, and will keep your mom in my prayers, and you as well. All of you, my DIS friends. I'm also shocked and surprised at the people who have walked away. People I never thought in a million years would. :sad1:

Oh Teresa, my heart is breaking for all of you. For Dom, my God, what is he going through? I have no idea how you all cope, but I know I try to believe that people have missions on this Earth, and perhaps Dom has not complete his. He has brought so many strangers together and in these troubled times, that is a gift. I know he is ever in my prayers, as he is for hundreds of others. I pray he is not in pain, and that he has peace.

I cannot imagine the losses though, for your family. As a parent I am not sure I would have the strength to stop praying for a miracle and let Him guide my decisions, and instead do as your brother and sister in law have done. That they have chosen to isolate themselves magnifies the losses they endure.

My sister suffered a massive stroke a Year ag. She should not have survived, but she did. She struggled for a year with PT, etc but she was never out of pain. About a year to the day she had a seizure was back in ICU. Pat was a nurse, she understood all that was happening but could not speak. My sister Gail is a respiratory therapist and pretty knowledgeable so she tried to help the girls make decision, but you cannot make people understand what they do not want to hear. Turns out you cannot change what is meant to be, and I believe that somehow Pat was just waiting for her girls to accept life without her, and give them time to make private adjustments. If I could just give one gift, I would give your the gift of believing Dom is in charge of his fate at this time. I am not sure that your brother and his wife are able to accept what will be, and maybe Dom knows that.

For you? You have knowledge that makes all of this worse for you. It is a shame your family is not relying on your background for guidance, because you could make decision making less Frightening. Instead, they ignore what you can do for them and for your nephew, and make decisions that are questionable at best. I am so sorry.

Carolyn- hugs to you! I am a parent. Your Mom and Dad have mixed Blessings, they must see you struggle, but they have you!!! I am so sorry that you lost so many when you needed them most. Lean on Mom, you are her gift.
 

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