Hi, I obtained my TBI back on Jan, 16, 2008 and I need to vent a little. I am so tired of my family saying they know what’s best for me when they only see me a handful of times a year. My family stuck me in foster care when I was released from the hospital because I was only 15 y/o at the time. I was turning 16 in ten days, on the 26th.
I know live in an assisted living situation but, I’m still treated like I don’t know anything. Starting tomorrow morning, I’m going to stop talking with my voice to everyone. I’m so fed up with being told I said this or I agreed to that when I have no memory of saying this or agreeing to that. I have short-term loss and I feel like people take advantage of this.
Because of this fear, I have cut all ties to the outside world, I see my family as little as humanly possible and I don’t have friends and I don’t want any. I have tried to date and that was a disaster. I feel like the only thing i can do right is stay silent and do as I’m told, without going anywhere or doing anything.
I may be feeling like this because I’ve been stuck at home do to the covid-19. But, I may also have had enough of my family “acting” like they care but have very little to do with my life. My Aunt became my legal guardian but she only handles my money, she says everything else is my care givers job.
I’m done, that’s all I can say. I sent out a mass email/text/ Facebook message to my family and caregivers telling them in going to quit talking.
Your frustration is understandable, but I have to say here isolation is never a good answer. We, humans, need social contact and all isolation does is breaks that contact. Family relationships can be some of the hardest to manage. Often family think they are doing what’s best but they can sometimes fall into a bit of a pattern ie ‘They couldn’t before, so they can’t now…’ and although we may need assistance sometimes, we do still want to have some independence. Trying to explain this can be VERY difficult. Family try to be helpful, often overly helpful. This isn’t done to annoy, although it can be VERY annoying. Maybe having a sitdown meeting with them where you can all express your concerns (and frustrations), getting them out in the open, but by the same accord they may want to voice some of their concerns too. And if we expect them to listen to our side, we too have to be willing to listen, openly, to their side too.
I have a bit of a memory issue (I say ‘a bit’, my wife says ‘a LOT’). If I don’t write it down, ‘POOF’ it’s gone. I have a diary with a note pad, so I can keep some sort of record. Then I’ve got a record of the things I ‘sometimes’ forget. I know my memory is not good but I HATE being reminded of it. That line of ‘I DID tell you the other day…’ is rather normal. I now say 'Did I write it down?" because people know if I didn’t write it down, it’s gone. Having a list can help me to keep a track, so if you have a meeting make a list of your concerns beforehand, then mark them off, so that your specific concerns can be addressed.
Family can be EXTREMELY annoying (As if I’m not ) but isolating yourself is never a good answer. Everybody needs time for themselves, but too much time with self can be destructive, we need others input (even if it is just to confirm that there input was wrong anyway). We need to have those conversations and often family are the best people to have them with. But the thing with a conversation is that it takes at least 2 people communicating, equally, and accepting other points of view.
But I have to say it again… …isolation is never a good answer.
I can feel your frustration when I read what you wrote. I also read Merl’s reply and I agree with the things Merl said—as humans we need interaction with people and each voice is important and unique. Communication is two-way: you must listen as much as you speak. I like Merl’s idea of keeping a diary/record of important conversations. I also like Merl’s idea of making a checklist of things you want to talk about to your family and your caregivers. Here are a few other ideas to consider:
Record important conversations. If you have a modern cellphone–the kind with many features that they call “smart phones”–you can use the “Record” feature on your phone. Sometimes they are tricky to understand how to use after you record a conversation, though. Another recording option is to get a small, handheld, digital recorder. When you start a conversation, take it out, turn it on and start recording and tell the person to hang on a second and introduce the conversation with something like: “It is Wednesday, June 3rd around noon. I’m talking to mom and dad and the caregiver,” (or any names that you are talking to) then let the recording continue as you record. At the end of the day, listen to all your conversations that day and write down important things you heard and think you need to refer to later.
Write down questions you have about things in a small notebook you keep in a pocket. Take out the notebook a couple of times a day and review your questions. Do you have answers to any of them yet? If you do, write down the answer to the question in your diary and cross off the question in your little notebook.
Work on improving your memory every single day. Dont’ give up hope! If you want to work to improve your life, you can ask your doctor or neurologist if there are some brain exercises you can do to work on improving your memory. Also, you could consider taking up a new hobby! Hobbies teach memory skills and are so much fun. Two examples with illustrations of why they help the brain include: 1) Art: artists learn how to use different paintbrushes and how to successfully mix paint colors; 2) Quilting or Sewing: quilters or sewing things like pillows or simple clothing like t-shirts requires following directions carefully and slowing down so each step ends successfully and you develops patience. You will need to see if someone in your family has a sewing machine you can borrow and you will need someone to come over and teach you. On your end, you will need patience and practice good listening skills to learn from the person teaching you (good for the brain!) Other hobbies to consider: learning a simple instrument like the recorder, woodworking, pottery, taking up a new physical activity like bicycling with a friend/family member who can teach you the rules of the road and make sure you are safe (wear a helmet at all times!) or take swimming lessons or some kind of dance lessons (Zumba is fun and you learn repetitive patterns, which is good for the brain!) or see if where you live has any access to give cooking lessons and take an interest in learning to cook for yourself (this is super good for brain skill development and short-term memory!)
These are just some ideas and you don’t have to do any of them. It’s good to vent. Now take some steps to feel less like the victim of your circumstances and get excited by the things you CAN choose to do in your life! There is an old saying that I like to share with people when they feel frustrated: “What you focus on expands!” This means that if you spend time focusing on your woes you will find yourself sad more than happy. If you choose to focus on the good things you can make happen in your life you will find yourself more happy than sad. You’ve got this! Get going on enjoying this one precious life you’ve been given!
Hi crystal. Sorry you feel this way , I know how hard everything is after brain goes haywire you don’t know you ass from your boob there’s another way to say it here in England but you can probably guess . Not talking to anyone isn’t going to help and you’ll find yourself extremely lonely . I know my brain does strange things now and I’ve had to grieve for the old me and try to accept the new me . I’m getting there slowly you will too so hang in there .