Caregivers for Brain Injured

I was the medical social worker for a traumatic brain injury unit in an acute rehab hospital for five years. I worked with patients, but my primary role was to assist the families in their understanding and adaptation to it as well as help them plan for the next step - whether that be home, a further rehab setting or a long term care facility.

TBI is devastating to families. You never get back the family member you had; you get some new version of them that you have to figure out how to have a whole new relationship with.

What are the long-term effects for your mom? The physical changes are typically easier to adapt to than the personality and cognitive changes. The impairment of appropriate social skills is one of the most challenging.

Twenty-five years is a long time to be a primary caregiver for anyone in any circumstances. No wonder you need help.

The top three things that come to mind are:
1. Respite - you need time away when someone else is responsible
2. Counseling - a safe place to express your frustrations and anger
3. Peer Support - can you hook up with any kind of support group? It really helps to talk with other people who are dealing with the same thing.

My brother suffered a TBI nearly 8 years ago. I spent the first winter after shuttling him to his many, many doctor appts/ co-ordinating his care. I said never again after that winter. He was difficult, combative and very hard to handle. I couldn't imagine doing it 25 years.

He has mellowed out significantly since that time but he is still a handful. His fiancé is now is full time care giver. (She was a senior in High School at the time of his accident). She might be a saint. He can still be all the above to a much smaller extent plus suffers depression. He can't drive (it was a car accident and he suffered seizures for a few years so that coupled with the trauma of the accident itself makes him unable). His depression worsens seasonal and the affects have taken a toll on their relationship. Much to her credit, she keeps trucking along, caring for him and their 3 year old son.

Like spongemom Scrappants said above, he is a completely different person than before. Again, I credit his fiancé for sticking by him, getting to know the new him and falling in love with the new him, who can, frankly at times, be trying.

I agree with the counseling. They both undergo individual and couple counseling.

Also, he is involved with a program for TBI individuals, that offers several services. One is they re-train the patient to be able to work and do job placement. Granted the jobs are generally minimum wage and not real difficult. My brother is physically very capable and even mentally capable, however, emotionally capable, not so much. He gets frustrated and angers easily. They find jobs for him to work that are away from the public and makes use of his capabilities without putting his job in jeopardy because of incapabilities. The bonus here is it gets him out of the house, bringing in some kind of money so he feels like he is financially helping (a big thing for him) and an outlet for his need to do "stuff".

I believe his occupational therapist is also through this program. His occupational therapist is *perfect* for him. He understands his abilities, frustrations and limitations and works to help my brother understand and deal with them as well. I know you were looking for something to help you cope but if you could find some kind of "program" for your mom, perhaps that would give you a little extra free time to de-stress.

Your mom is very lucky to have you.

Nothing to add but want to say that your mother is truly, truly blessed to have you loving her, fighting for her, and being by her side!

This brought tears to my eyes. So heartbreakingly true. And boy does it suck great big donkey balls. 

My mom suffered a TBI ten years ago. I have siblings that could help but are not close geographically and to this point haven't helped. We had a come to Jesus meeting recently and I told them I absolutely have to have help at this point. I'm hopeful we're all on the same wavelength at this point. 

One of the positives for us is her accident happened in Michigan as well and her insurance has been phenomenal to deal with. The negatives are at this stage in her life (71 yo) she doesn't really have any desire to participate in the few programs that might be available to her, she can't drive and we currently live away from the rest of our family...so everything falls on me. I get to be her caretaker, only social outlet, etc. It's a lot. 

Does your mom go to counseling? My mom's counselor has been a wealth of information. I don't counsel with her, but she is very kind to give me a head's up about little things that might help our situation and benefit me as her caretaker as well. Sometimes an article in a magazine. Sometimes a program in the community. That kind of thing.