Source
r/TBI•
GrumpyFalstaff

Resources or support for caretakers/partners of people recovering from tbi?

My fiancée is recovering from a tbi after a car crash. I'm her primary caretaker and even though her mom and family are helping me a ton I'm losing my mind. Does anyone know if there are any resources or support groups for people in my position? I don't want this to destroy our relationship but I'm barely keeping my head above water despite having lots of help and support. The emotional side of it being my partner is what's killing me, not the physical work or stress. Everyone just says to take care of myself, which I'm doing, but its not helping. Am I as alone in this as I feel? Is there something that might help or do I just need to be better and tough it out until we get through this? I know I have it better than a lot of people with her support system but I'm lost.

Posted Jun 2, 2017, 10:45 PM UTC

54
canoedust•

TBIs are very difficult for those that have them and the people in their life. How long has it been since her accident? I was a huge pain in the ass for the first couple of months, but have recovered and improved a lot in the year since my accident. Understanding and patience are important. I had to relearn and be taught a lot of things after I had my injury.

What kind of symptoms are you seeing with your fiance?

3
shangalang•

My fiance was in an accident months ago and was left with a very severe tbi. It has been an emotional whirlwind and no words can describe the devastation I have felt this entire time. There should be community support groups available. I dont know what area you are from, but you could try to talk to a social worker to see what resources are available. In my area there is a tbi support group that helps caregivers too. I haven't personally used it, but I know it exists should I want to look into it in the future. If you ever want to talk/vent, message me. I know I appreciated being able to talk to people, especially in the beginning.

2
totlot•

So sorry to hear what you are both going through. If you live in the US, check out your state's BIA website (look at the resources listing on the TBI page if you're on a desktop). They usually list local support groups, which is exactly what you need since they are going through the same thing. They also will know lots about local resources that will be helpful to both of you. The BIA website has lots of good info on it too.

Good luck. It's important to stay patient and positive. Many people do not recover quickly from a TBI.

2
pj925•

Hi Grumpy. I'm sorry about your fiancee's tbi. There is a lot to process when a loved one gets a tbi, and there's a lot of waiting and wondering. I don't have a group to suggest, but feel free to use this group to express your frustrations or worries. We all try to help each other as much as we can.

1
exspearamint•

Hey there. Wanted to check in on how things were going? My husband had a terrible TBI and I felt very alone, as you do. A support group helps because unless you have been through it, it really is such a unique position that people just don't understand. Especially as the injured person get better from the outside view. Because the inside reality is still as bad, if not worse sometimes. Sadly our story didn't have a happy ending, but we all have to do what's best for our own physical and mental safety. I hope you found some support.

1
GrumpyFalstaffOP•

Hey, thanks for checking up on me, it means a lot. I'm sorry to hear about your husband. I'm still on my feet I guess, haven't had any luck with a support group but we are seeing a couples counselor who has helped a lot with the stuff between the two of us, that took some of the pressure off. There's still a lot that hasn't been figured out though. I don't know. This shit is hard.

1
exspearamint•

Talking Heads summed it up... "And you may ask yourself How do I work this? And you may ask yourself Where is that large automobile? And you may tell yourself This is not my beautiful house And you may tell yourself This is not my beautiful wife."

2
exspearamint•

Yeah, I can't imagine many things harder in a relationship. You love them, and they show a glimpse of their old selves but it is always fleeting. They will never be thier old selves. I loved my husband more than anything. We have no kids and he was my whole world. But I'm only 35. I deserve some happiness too. It sounds selfish, and feels selfish, but I know as the caregiver the reality is the opposite. It's all about them all the time. And they have to be willing to change and do some work too. It's not just you. But it turns into that and It's all consuming. And that isn't sustainable. I hope you are able to get out on the other side of it. But if you dont, that's ok too. It's a curve ball you never expect and you have to do what's best for you. You are lucky she has a support system. Lean on them. I didn't have that and totally burnt myself out. Man, don't you sometimes think to yourself "How the fuck did I get here?"

1
GrumpyFalstaffOP•

Fuck, I don't blame you. I'm still in this for the long haul; I love her like crazy, even the new her, but I can totally see how that could fall apart. I'm just holding onto hope that we do have that happy ending coming. So far there's no reason we won't get there, at least in terms of her recovery, the question is what our relationship will look like. She wants the relationship we had before; I do too, but that's just not the current reality for me. She doesn't remember the weeks/months in the hospital, she doesn't remember me proposing or us dating, she doesn't see how different things are for me now. She doesn't get why I am struggling to get back to some resemblance of a sex life. I know that it hurts her when I say no to sex, but I just can't. I feel like her parent a lot of the time and I'm clinging to the hope/assumption that that will change. Our couples counselor is helping with that though, so I'm cautiously optimistic. In the mean time I feel so alone. Her family all have partners to lean on for support, my main support is the one who was in a coma for 2 weeks, just when I needed her most. I don't have her to give me advice or her shoulder to cry on anymore. I mean, I do, but its different. I miss my best friend. So much has gone our way in this stupid situation, but still, hell of a way to start a marriage.

1
exspearamint•

Yeah, your timing is shite! Sending good wishes that you get someplace good. I know it won't be back to the way it was, but I hope you can make a new reality, as a couple and not caretaker/ward. Maybe you'll be able to fall in love all over again! Always gotta look for that silver lining.

1