Is This The Right Place?

[pricklyrose]

Hi Everyone,

My name is Stephanie, and I am pleased to meet all of you - well, to be here with the possibility of meeting all of you. I am just not sure I am in the right place. I am a caregiver... my husband has an acquired brain injury due to something that started as a diabetic coma on Thanksgiving and ended with a cardiac arrest. They say he is minimally conscious, but I believe he is conscious just severely mentally disabled and I do mean severely.

Anyway, I need help, advice, laughter. I am caring for him in the home and have been for about 2 weeks. Working through the VA until Medicaid kicks in, and I must say, I am not fond of the VA (no insult intended).

I have looked online for a place to go such as a forum, and it is seriously hard to find. Is this the right place for me? If it isn't, I am so sorry!

Regards,
Steph

[SCI-Nurse]

Welcome. Because this website it primarily for those with spinal cord injury or those who care for them, you may not find all the support you need here, but you are certainly welcome. Many of your issues will be different as brain injury has some different issues, but many are similar.

Have you been in touch with anyone from the Brain Injury foundation? It is a national organization but there are also some local chapters: http://www.biausa.org/

While his brain injury was non-traumatic, you will find people with common issues who are caring for survivors of traumatic brain injury (TBI) as well. Here are a few:

http://www.headinjury.com/linktbisup.htm

http://www.lapublishing.com/Husbands-Wives.60.0.5.1.htm

http://www.familyvillage.wisc.edu/lib_brin.htm#Mail

http://www.brainandspinalcord.org/co...pport-tbi.html

What state are you in? Resources vary by location. Did your husband go to a VA brain injury rehab program?

Please complete your profile as it makes it easier for everyone to respond to your posts.

You can also join our private caregivers forum if you are interested. See the sticky topic at the top of this forum about how to join.

(KLD)

[pricklyrose]

Thank you for replying so quickly.

We are in the Boise, Idaho region. I do not know if this VA has the brain injury rehab. If it does, it was not offered. I know Elks neuro rehab was going to take him, but the VA did not want to pay. Apparently, Medicaid pays more according to Elks.

I will complete my profile, and thank you for the links. I will check those out as well. Right now I feel like I have been thrown into an odd new nightmarish world I truly wish I could escape, but I have fought like (you have no idea) just to keep him alive. Now that I have him home, I am not sure what to do other than keep him clean and safe. It feels like I am fighting an uphill battle with a medical system that would rather not see him alive.

Thank you for your information. I actually found this forum on Google as I was searching on how to relieve the spasticity he has throughout his body. He grimaces all the time as his legs are jumping around. I just feel lost, and a reply gave me a great deal of hope.

Again, thank you.

Steph

[Obieone]

Hi Steph ..... and welcome ... you are absolutely in the right place. I think it would be fair to say most here are coping with spinal chord injury but there are also some dealing with tbi as well (and in some cases both ) .. so yes welcome.

There is a forum dedciated to tbi research here: /forum/forumdisplay.php?f=57 ... you might find helpful !

Caregiving is all about figuring out how to cope .... share strategies ... ask questions ... share feelings ... so use and abuse us at will. We're sorry you had to .. but awfully glad you found us!

Obieone

[pricklyrose]

Hi Obie,

Thank you for the warm welcome. I put in my request for the private caregiver group as well. You will definitely hear a lot from me... I have a lot of questions!

Caregiving is rewarding and complicated on so many levels. Never know if I am hurting more than I am helping. I give him love, read to him, try to decipher his own language, and thank Ambien in a weird way... long story.

Anyway, it is 7:30 here and time for meds, so I will chat with you later!

Steph

[SCI-Nurse]

He is entitled to be evaluated for possible admission to the closest designated VA TBI rehab center. For you this is here:

Veterans Affairs Palo Alto Healthcare System
Physical Medicine & Rehabilitation/117
3801 Miranda Drive
Palo Alto, CA 94304

650.849.0526 (fax)
650.493.5000 (phone)

If he is accepted, the VA may be responsible for his transportation, but that would depend upon a number of factors. Best to contact them and ask about the process for consideration, as well as any other VA services for which he may be eligible related to his BI.

(KLD)

[pricklyrose]

Thank you so much for the information! Getting the VA to help even get the right medication to the door has been like banging my head against a brick wall. If I ever even have a question, I am told he needs to go into a nursing home by the case manager because I cannot handle the care. So, I just do not ask questions.

I want him in a rehab facility, and until then, I will do everything possible to keep him home. He questions my motivation; every time he calls, I cringe.

Anyway, thank you again.

Steph

[chiappa]

I am not spinal cord injured, have a condition known as Locked In Syndrome, which is caused by a stroke and left me with no movement other than opening and closing my eyes, I also lost speech. This site is great for asking all types of care questions.
Have you looked into augmentative complication systems for him?

[pricklyrose]

Hi Chiappa,

Simply amazing. I have researched a lot on pvs, mcs, and locked in syndrome. Honestly, I never imagined I would be fortunate enough to meet anyone with locked in syndrome. The neurologist is inexperienced with this form of injury, and said Mike is either MCS or locked in. Mike has awareness and he can purposefully move his eyes and shoulders enough for me to get consistent yes and no answers (if he is not in severe pain from the spasms). He gets extremely tired fast though when he does respond. Though he can respond much quicker than even a month ago - almost instant.

I did a Google search for augmentative complication systems, and well, got a lot of things on breast augmentation... I am thinking you may need to point me in the right direction if you do not mind?

If you do not mind me asking, how are you? How long has it been since your stroke? Have you seen the movie, "The Diving Bell and the Butterfly"?

Sorry if I am all excited. Very nice to meet you and yours.

Kindly,
Steph

[marmalady]

Here are two resources I've found valuable:

http://www.neuroskills.com/cities.shtml

http://tbiforums.com/news.php

[chiappa]

Sent you a private message. Look forward to hearing from you.

[Kimmel21]

hello Steph, so sorry to hear about your husband. You have found the right place though, there are many here dealing with TBI although most just SCI, I guess im one of the lucky ones that gets to taste both worlds yay me

[pricklyrose]

Hi Kimmel,

Nice to meet you. It is nice to meet people who do understand what I am going through - I never thought I would be so lucky.

Both a TBI and SCI? Wow. I cannot even imagine. Life sure has a way of throwing people curve balls... I know I wasn't expecting to spend the holidays in ICU. How are you coping with the life changes? Do you have a good support network? Please, if I can be of any help... I have a good ear.

Marmalady, thank you for the resources. I had found the TBI Forum previously, but there is not much activity like there is here. The other one is actually really nice and new for me. All the resources I can find are a definite step in the right direction.

Chiappa, a big, enormous thank you!

Regards,
Steph

[SCI-Nurse]

First,I would strongly encourage you to apply for him to go to the TBI rehab program at Palo Alto. If you cannot get anyone to help with this or he is turned down, first talk with the patient advocate at your VA. If they cannot or will not help you, contact the local office of your Congressperson and tell them you story. They can send an official Congressional inquiry to the director of your VA hospital, which they MUST respond to within 72 hours. I can guarantee these get attention at the highest level.

In addition, if you have not yet contacted the Paralyzed Veterans of America or the Disabled American Veterans and asked for their help help with this, I would strongly urge you to do so. The PVA has recently taken an interest in brain injured veterans, not just those with SCI. You can find a list of NSO (National Service Officers) offices under the benefits section of www.pva.org

You can also post questions on this for the Veteran Advisor on our Veteran's Forum here at CareCure.

(KLD)

[pricklyrose]

Thanks, KLD! I will most definitely contact my Congressman. I asked his case manager about it today, and he almost snickered at me as he told me they do not do things like that. I have been trying for a while to get him into a neuro rehab unit, but the only options I have will not take him without the VA paying or if he has Medicaid/Medicare.

Honestly, I am trying so hard to make things work, and sometimes, it feels like I keep running into large brick walls. Ouch. I do appreciate the advice... I was not aware this could be a possibility.

Many Thanks!

Steph