I'm trying to learn how to deal with all the challenges of being the spouse of a TBI/Post Concussion Syndrome survivor. I'm looking to talk to others that are dealing with the same challenges, get some ideas on how to cope!

kbh

Welcome to NeuroTalk.

We've tried to start some thread for spouses of PCS/TBI in the past. We had a hard time getting participation The needs of a spouse are different than the needs of a parent.

I think we can help and support you. What can we help you with ?

Can you tell us about your spouses injury and symptoms and your greatest struggles ?

Didn't work for me.....I left them all 1700 miles away...They Never understood, never cared......

I moved forward with my life, people keeping me down and making my symptoms worse...

Been gone over 7 years

It is obvious that kbh cares and is trying to find out how to understand her/his spouse. kbh is to be congratulated for the effort to care and understand.

In another life - the daughter of Father with TBI and the Mother of a son with TBI. In all honesty if my son had been my husband I think I would have eventually left . . . it was all in the too hard basket because of lack of input by those who should have known better. It tested me beyond what can be expected of anyone.

In saying that once I found the right sort of help doors opened and improvements made which made life easier for all of us but I did have to remove him from home for my own safety. And with distance between us I had the space to set wheels in motion and research, advocate for much needed changes to get timely and appropriate rehab.

What helped? Taking time out for myself which I never did enough of. Should have taken supplements as in Vit B's and C etc. The adrenals took a major hit and my health suffered eventually.

Keeping to a routine even if not welcomed. In time your loved one should come round and this makes everyone's world a better place.

Counting to ten - often - before speaking, acting, as your frustration and verbal comments don't help. Before I would come back into the house after going out I would actually stop on the steps, and mentally pull down a cover of protection, white light.

Medication for mood disorder made the world of difference not only to my son but for everyone associated with him, even the rental agency who he rented his flat off noting the marked changes. We should have had that when behavioural issues reared their head. I attended a seminar by Dr Roger Wood when he toured our country, he spoke of the merits of tegretol or epilim as mood control.
Later correspondence gave me answers which were denied by the 'experts' here.

A good psychiatrist/psychologist are worth their weight in gold, finding them not easy. They gave us better ways of accessing/ handling our son based on his personality and impairments; something as simple as removing some words or changing our line of questioning. Appts with psychologist, having both of us in the room, led to some interesting sessions but changes happened. Previous psychologists were a waste of time and money for they believed everything my son said who played Jeckly and Hyde perfectly.

Being as I informed as you can be about brain injury as it pertains to your spouse is vital. Sadly you have become nurse, doctor often having to work out what is wrong then go find the necessary help. On top of this accountant, lawyer etc etc and the role you once had as spouse seems to have disappeared, the one job you did well is no longer.

Sometimes support groups can be great, sometimes not. My local Brain Injury was of little or no use to me, but a group Supporting Families was excellent, a place in which to vent, gather info and share. At times they were the difference between me throwing in the towel and not.

And now almost 20 years on my son has a quality of life, sure he is not the same person he once was but has returned in many ways to former self with empathy, love and humour back; something we never believed possible. He has come from being worse than a baby, relearning everything. The medical profession believing that if he survived he would never amount to much. He lives in a flat, cares for himself and works part time.

The road was long and hard, costing me my health, wealth, marriage, way of life but I am proud, so proud of what has been achieved. I wrote about it, self publishing our story and was overwhelmed at the response I received - stories like ours of being given little help, people overcoming the odds and some not - but for the most part where folk remained positive and sought intervention from those versed in BI, results exceeded expectation.

Only those of us at the coal face know the toll it takes. And despite the views, comments of those who have not walked in our shoes I understand should anyone walk away or make other arrangements.

Now that I have had a hit on the head, I often give a silent apology to other sufferers as I know BI from another perspective! But in my favour I am aware, or think I am, understanding what sensory overloads is, fatigue and all its implications, lack of tolerance and so the list goes on.

What has helped me the most? Yes, my son for he understands and comments and suggestions from Neurotalk has made a difference, a big difference to my being.

Best of, you have my blessings in whatever you do cos it ain't easy. Chin up.