Caregivers Support A place for people who are a caregiver to another to find help and support.


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Old 07-22-2013, 01:51 AM #1
cljm06@aol.com cljm06@aol.com is offline
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Hello anyone out there. I am new to this site and this is my first post. Not sure where to begin. I have desperately been searching for any kind of help only to find none. Even if there really is no resources out there, I would truly appreciate just to be able to chat with anyone. My husband was involved in a terrible/catastrophic injury motorcycle accident over 2 years ago. Among many other injuries, he suffers Severe tbi and ptsd. We live in Florida and have no family or friends locally (or any that have taken the 2 hour plane ride throughout this time to provide any kind of help or support of any kind). I have been his sole caregiver since the accident, working from home since his accident desperately trying to hold things together but failing miserably - everything has just turned into an absolute nightmare disaster and we are losing everything we have worked our whole lives to build. Please don't think I am complaining, I am so very greatful to still have him in my life and would do or give anything for his recovery, just seem to be failing miserably at it. I have taken him to so many dr's trying to obtain the proper medications and treatments he absolutely requires for his "mental health/well being" only to continuously be given rediculous excuse that "they have an office policy not to provide certain medications to control extreme outbursts of anger and violence +continuouly destraught despite being told they had no problem continuing the medications the trauma, rehabilitation hospital and neurologists all agreed and insisted must be continued. Being completly alone, overwhelmed and no idea what to do or where to turn. I was extremely sick prior to my husbands accident and have gone ever since without any of my necessary medications or treatments I require - its impossible enough to keep up with his and try and keep my job with the rest of normal day to day needs impossible to keep up with creating just more incredible stress. No idea if anyone may have any suggestions or just even want to chat but would so very greatfully appreciate it.
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Old 07-22-2013, 07:11 AM #2
ginnie ginnie is offline
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Default Hello cljm

Welcome to Neuro Talk. I will talk any time you need to. I am sorry for your husbands accident, and the trauma that you are going through. I too live in Fla. Have you tried the hospital nearest you for a patients advocasy group. There may be help with that route. There are organizations that can help with medical expenses through teaching hospitals. I received help from Manatee memorial hospital in Bradenton. They paid for many of my medical expenses while I was going in for surgery and care etc....
Maybe seek a care givers support group too in your community. A womens resource center may have some direction for you too. Council is a good idea when going through so many issues. It is based on income in many cases. My own is free as I am on medicare/medicaid. I know what it is like to care take for someone in recovery. I sure will be here to talk to. ginnie
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Old 07-24-2013, 01:01 PM #3
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Quote:
Originally Posted by ginnie View Post
Welcome to Neuro Talk. I will talk any time you need to. I am sorry for your husbands accident, and the trauma that you are going through. I too live in Fla. Have you tried the hospital nearest you for a patients advocasy group. There may be help with that route. There are organizations that can help with medical expenses through teaching hospitals. I received help from Manatee memorial hospital in Bradenton. They paid for many of my medical expenses while I was going in for surgery and care etc....
Maybe seek a care givers support group too in your community. A womens resource center may have some direction for you too. Council is a good idea when going through so many issues. It is based on income in many cases. My own is free as I am on medicare/medicaid. I know what it is like to care take for someone in recovery. I sure will be here to talk to. ginnie
Dear ginnie

As my shoulder be there for the
both of you
keeps me out of my own crap

GOD IS GOOD
HEAR OUR PRAYERS
AMEN!
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Old 07-24-2013, 07:01 PM #4
ginnie ginnie is offline
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Default Hi Eva

You are my rock. I listen to all your prayers. I agree with you. When we put ourselves in a position to try to help others, our own problems seem less. Life is tough Eva, no question about it. Glad we have each other here, and all of our buddies to lend an ear. God bless and keep all of us. ginnie
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Old 07-25-2013, 06:37 PM #5
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Default still desperate/even worse

Hi Ginnie, thanks for the reply, I really can't tell you how great it was to actually have communication with someonw. I have been so isolated for so long and things are only getting so much worse. I have tried to find any help everywhere, unfortunately, I am always told that I rediculously fall into this "cut off" category where I don't qualify for anything and with my husbands medical its impossible for me to find any extra money. I took him in for an emergency appt with his psychiatrist (3rd dr he has had in 2 years) so he could see the "mental state" he has been in and I begged him to do something or at least give me something to give him when he is uncontrolled - actualy got same rediculous excuse of office policy, don't issue anything addictive etc, he didn't even try and get him out of this ccomplete psychotic break he clearly has been in and how extremely "unsafe" this is for both of us. I feel sick. Will write lter, thanks again.
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Old 07-25-2013, 07:20 PM #6
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not a caregiver, my girlfriend is. it's so hard on her I don't know how she does it. I wish I could get better but I don't know how. I am here if you want to talk. I am sorry you are ni such a tough spot
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Old 07-25-2013, 07:40 PM #7
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Default Hi cljm

I am here anytime to talk to. I know what it is like to be isolated and feel alone in a crisis. I came here for a different reason, but crisis also. Others will lend an ear too. This is a good community of people who really do care. Is there any community based help for you? Money is always an issue, but there has to be something around locally to give you a boost. Write anytime, you are never alone here. You can PM me if you want also. That keeps the conversations private. Have a good night. ginnie
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Old 07-25-2013, 07:53 PM #8
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Quote:
Originally Posted by markneil1212 View Post
not a caregiver, my girlfriend is. it's so hard on her I don't know how she does it. I wish I could get better but I don't know how. I am here if you want to talk. I am sorry you are ni such a tough spot
Thank you very much for responding. I truly know how hard this must be on both of you. The fact that you are aware of how much she cares for and about you, you have no idea how very helpful that alone is. I have no help and never have no matter how I have tried and never find any. I just can't keep up with everything there is to be done. His care has always been #1 priority, than trying to work from home and keep my job for our sole income and there is just so very much more to do that has been put aside and I desperately need help getting to and trying to fix all of the complete disasters going on. With the state of mind my husband has been in, that I just can't snap him out of, and can't get any of his irresponsible drs to do something about, I get no sleep, when I finally do, I am woke up being screamed at and it lasts for hours and hours, he weighs almost 200 lbs more than me, I can't protect myself, I've tried everything and everywhere and there just isn't anywhere or anyhing I can do. This is just a terrible nightmare. I have no idea how or will end, just sure it won't be good. I truly understand he is and has been going through a terrible nightmare himself and I know its not his fault, I just don't know how to help him and am getting so very frustrated and angry that his drs have such rediculous excuses and lno concern for anyones well being. Sorry for rambling, I'm sure you have enough of your own issues and thank you for listening. Very best wishes to both of you.
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Old 07-25-2013, 08:27 PM #9
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Quote:
Originally Posted by cljm06@aol.com View Post
Thank you very much for responding. I truly know how hard this must be on both of you. The fact that you are aware of how much she cares for and about you, you have no idea how very helpful that alone is. I have no help and never have no matter how I have tried and never find any. I just can't keep up with everything there is to be done. His care has always been #1 priority, than trying to work from home and keep my job for our sole income and there is just so very much more to do that has been put aside and I desperately need help getting to and trying to fix all of the complete disasters going on. With the state of mind my husband has been in, that I just can't snap him out of, and can't get any of his irresponsible drs to do something about, I get no sleep, when I finally do, I am woke up being screamed at and it lasts for hours and hours, he weighs almost 200 lbs more than me, I can't protect myself, I've tried everything and everywhere and there just isn't anywhere or anyhing I can do. This is just a terrible nightmare. I have no idea how or will end, just sure it won't be good. I truly understand he is and has been going through a terrible nightmare himself and I know its not his fault, I just don't know how to help him and am getting so very frustrated and angry that his drs have such rediculous excuses and lno concern for anyones well being. Sorry for rambling, I'm sure you have enough of your own issues and thank you for listening. Very best wishes to both of you.
don[t ever think you're bothering me. I need to stop thinking about myself a few minutes a day. I am so so sorry for your situation. it does sound scary. you need to find a doctor that will listen to you and help your husbands situation. I know it seems like none of them is listening, but you need to find another one. I am concerned about your situation. let us know what happens and feel free to email me any time or send me a personal message, as I am still disabled and home I check my mail often.
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Old 08-13-2013, 09:32 PM #10
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I can feel your despair through your words, and I am so very sorry that life has thrown this at you. They say that God never gives you anything that you can't handle, but it sure doesn't seem that way sometimes.

I stumbled across a wonderful blog called "Pink House on the Corner", written by a woman who is struggling to care for her husband, who suffered a massive stroke. She is also doing so much by herself, and I find her blog touching and even funny sometimes. I think you would like it (in fact, I think she is also in FL.)

Bless you, and take care. There are many nice people on this site.
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