TBI Caregivers. Care giving can be an emotional roller coaster

[wendyt]

I am new to this forum and am ecstatic that it is here. My husband Marco was in a motorcycle accident in November 2008. He was taken by helicopter to UCLA where they saved his life. Many months later he went to Casa Colina where, as he says, they gave him back his life. Marco did not talk, walk or eat on his own for 6 months. He now does all of those things and is starting to work on his independence. We are so darn lucky as we have had the best medical care with doctors and their teams who truly care. We are blessed to have understanding employers and disability insurance. We have supportive family and friends although the ones I would have thought would still be here by our side arent. I am an attorney so am absolutely comfortable being an advocate.

With all of that said, this is a horribly hard journey. One thing that has surprised me is the lack of a community of recoverers and their caregivers. I connected with some folks at each place Marco was at but when he left we all scattered to the wind. I attribute it to how overwhelming this job is. In an instant (to quote the Woodruffs) our "old life" is gone and we just have to figure it all out on our own. I truly dont know how I have held it together. It is an incredibly lonely journey as no family member or friend really understands how draining it all is. They only hear that Marco is now walking, talking, starting to get on the computer, able to walk around our neighborhood a bit on his own and they think he is all better. They dont know about the endless repeated questions, the confusing role of being a wife, cheerleader, protector, advocate and at times a mother. Marco is a witty, loving, handsome 45 year old man, an attorney in a high powered law firm who suddenly has to redefine his life and thus I need to redefine mine. I told myself in the beginning that I would not let this experience make me a bitter hag and I have stuck by that. It helps to spread gratitude to those, particularly the medical profession, who have walked with us.

I am so relieved to hear others voicing my thoughts, fears and yes, my optimism about our future. One thing I have learned-I am a lot stronger and a better person that I ever gave myself credit for and so are all of you. Sleep well. Wendy

[scmom]

  Wendy, you said very eloquently what all of us caretakers are feeling as we walk this very difficult road with our loved ones.  This is not a journey that any one of us asked to take but we are thankful none the less to be at the side of our loved one as they recover.  You are right, this is very lonely for us and at times we feel abandoned by everyone around us.  I have explored every other site on the internet since my 16 year old daughter's homecoming 2 months ago searching for every possible support that I could give her.  She spent 47 days in the hospital, the first 3 1/2 weeks comatose from an MVA. The Traumatic Brain Injury Forum has helped me feel connected to others that unfortuately are also walking in my shoes.  So, sharing experiences, both the positive and negative are helpful and healing.  You husband is most fortunate to have you by his side, your inner strength definitely shines through your post. Hang in there!  scmom

[wendyt]

All-

Just checking in. Thinking about all of you who I dont know but I know only too well. A hug to all of us and a thumbs up for we are amazing people. Someone told me recently that it helps her when dealing with the trauma of her life to realize she really does have a choice. Although the "choice" of leaving or not fully supporting and helping my husband is unacceptable to me, it is true that it is my choice. Somehow acknowledging that takes a huge weight off my shoulders (at least for today). I also have reached out to friends lately and written on our caringbridgesite that I feel lonely and isolated and people have stepped up. I am actually surprised at the folks who have stepped up-I am learning that at different points in our life we need different people and I may not need or want some of the old people in my life anymore. Sleep well. Wendy

[bubbles9333]

I am new here. I live in British Columbia Canada. I was diagnosed 2 weeks ago with cerebral atrophy, and was told that my cerebellum is half the size it should be. I  am only 45, and the Drs say that I am functioning right now at a level of a 65-70 yr old person. I have suffered from muscle pain, severe headaches for many, many years. I have tried to get support in the small town I live in, but even mental health says they do not have trained workers to help me deal with this roller coaster ride I am on now. I have two sons, one is 20 and the other is 23, and they are terrified they are going to lose me. They have no other family to depend on, except for each other. I have no resources to even start to deal with this. They are scheduling an appointment for me to see a neurologist, but here in BC the waiting lists are very very long. My son broke his shoulder over a year ago, and still hasnt seen a specialist to have it assessed, if that is any indication of what it is like. I went to social services, but they told me I would have to sell the car I have to try and support myself, until the finances run out. My son takes me to do errands and for appointments, and without the vehicle, I could not affford to go anywhere. Does anyone know any resources for support or anything that I can try? I would be eternally thankful for any help that could be suggested.