Consolodating Help for spouses and caregivers
 

If we can consolidate the various tips and other help for spouses and caregivers, a sticky thread with those posts can be started. Please refrain from discussion posts. Those of you who have posted useful tips will be most able to find and copy the post onto this thread.

Just a note to Top Post this thread so it does not get buried.

I can only think of this as it relates to myself, that is, being on the receiving end of the caregiving. The biggest thing I needed and still need is my husband's empathy. Before I would have said I need him to understand; to really get it. But now I know that you can't get it unless you've lived it.

But anyone can demonstrate empathy, an attempt to get it or to imaging how it feels. I thing it's fine to admit that as a caregiver you may not really know but it means the world to us to know that you believe our un-seeable symptoms and you are doing your best to understand.

Thanks to our spouses and caregivers. You are precious to us and I know that you are also having your own emotions and pressures to deal with on top of every thing.

:grouphug:

X-soccer gal

Electronic pill boxes that not only carry your pills but also alarm when it's time to take them. This was quite a highly praised tool at one of my brain injury support groups. I googled a few reults: http://www.google.com/search?q=elect...iw=768&bih=946

Repost to Top Post so newbies and other spouses and caregivers see it to contribute.

As the mother and caregiver of a PCS sufferer,I can only say what I've done (or wish I"d done). I'm no expert.

I keep a "Nathan Notebook" that I should've started a long time ago! Try to keep notes of dr visits, phone calls, school calls, his bizaare symptoms. I don't do an extraordinary job of this: I have 2 other children at home, own/operate my own business, been sick myself, and just this week took in my friend's 10 y/o while she's in the hospital.

I try to observe more and ask less often how he's feeling BUT he doesn't tell me. We'll be sitting at an appointment and they ask him something and he's like 'yeah, all the time'!!!!

I do assist in his daily vestibular therapies so I can give the PT accurate updates.

I ask him what he wants to do or who he wants to have come over to hang out with him. I usually have to facilitate those meetings, though he's getting better.

I stay out of the way while his school tutor is here. He works way better for her than me.

I spend time with him, mostly next to him while he watched TV shows. This helps reduce his loneliness, anxiety, gives me a chance to observe him, and an ocassional nap lol.

He knows I am advocating for him and is willing to try most things I/dr/you guys on here have suggested.

Hardest part was the other day when he asked me if he's ever going to get better. :(

Worried_mom and others,

The notebook or journal is great. Take it to doctor's appointments to take notes, too. If you watch the eyes, you will begin to see when there are struggles. My wife can read me like a book by watching my eyes when I am struggling or starting to struggle.

It would be worthwhile to ask your injured person/son/husband to try to be open about any symptoms they notice. Let them know that this is not so you can try to fix it or such but rather so you can note it and try to understand what they are going through. Let them know that you don't take this as complaining or wining.

The TBI Survival Guide at www.tbiguide.com does a good job of explaining the symptoms. You could even read through parts of it with them. You'll get, " Oh yeh, I have that all the time" or "I feel like that when too many people are talking at once."

Understanding what is happening is the first step toward helping them recover.