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Support for family dealing with someone with pcs
I have not been here on this forum that long, but, I was curious if there are any other members in my situation (wife where DH has PCS)?
My DH is still not that far into having PCS and he is struggling with his symptoms. What I mean by struggle is not accepting the fact that he has PCS. The doctors did not tell him he could not go back to work, did not perscribe him any meds outside hospital stay, etc. I tell him constantly that he needs to calm down, relax after a day at work, etc. Also that he needs to eliminate stressors in his life at the moment. Yesterday, we went to visit his family which is over an hour drive. Of course I drove but it seems everytime we go over there, his father always has to bring up past situations as conversation and it always ends up with loud talking. They know his condition and it goes in one ear and out the other. I told him at one point during the visit that I was actually getting a headache from all the yelling and loud talking. He just told me to calm down and sit down. He had no concern for me whatsoever and at that point, I was fed-up and ready to call it a day. When we got home, he went straight to bed and I ended up kicking him out of bed because he kept me up for hours not being able to sleep, headache, pressure, etc and he found his place on the couch. He works a part-time job as well as his fulltime job and he is working today 9-5. He told me on the phone during his break he was not doing well and I kept my mouth shut. I was ready to attack him and bring up what happened yesterday but I kept my mouth shut when, in fact, yesterdays events are impacting him today. I showed some sympathy in telling him I was sorry and that he should be taking breaks. He said it was to busy for him to take breaks and all of a sudden, he also blamed the fact that I shoo'ed him outta bed on the couch as a major factor in him feeling symptomatic. I was like what the h*** :yikes: My DH is not computer-savy and I told him about this forum I am associated with to get information and to help "US" out while he is in recovery. I always inform him of new information I come upon; he never comes to me and asks questions about his PCS. I am about ready to give up. For how can you help someone who does not want to help themselves? This forum is loaded with information for people with TBI's and PCS. Most of the members are sufferers of such medical conditions whereas I am married to someone who does. I am looking for any information on support for someone like myself who is on the other end. I can only do so much and with me ranting on about this so early on in his injury, I am afraid it is just going to get worse and I will be the one who will lose it :( |
Amy Marie,
Sorry to hear of you recent struggles. We tried to start a thread for spouses but it did not develop much of a following. The needs of wives is much different than that of parents and other caregivers. The best solution for many is to find a brain injury support group that includes support for caregivers. Here is a link to support groups in Pennsylvania http://www.biapa.org/site/c.iuLZJbMM...up_listing.htm The event with his loud conversation with his father is a classic cause of a return or increase of symptoms. I wish I had a suggestion on how to avoid a repeat. The dynamics of extended family and their refusal to understand his needs is a problem in itself that just magnifies the PCS issue beyond your control. I hope you can find some contacts in the support group network that can help you. At least, you can be with people who understand you situation. My best to you. |
A good place to go for Traumatic Brain Injury and PCS explanations in laymans terms is:
www.tbiguide.com It has a simple table of contents that breaks down causes, symptoms, family support, etc. It gave my family a much better insight into what I'm dealing with. As a 56 yr old man, I have issues with accepting that I currently can't do things that I could do before. Maybe it's a male ego thing, don't know and it really doesn't matter. The bottom line is that your brain takes time to heal and that timeline is variable to everyone differently. I have full expectations of a complete recovery, being patient is the hard part. Good luck to you and your husband. |
Did somebody call me??
Hullo Amy Marie -
I'm Amy too! And my 52 yr old hubby was in downhill skiing accident 1/31/11. I'm sorry you're going thru so much right now, at the same time, relieved because it sounds like your husband is actually doing fairly well - relatively speaking. My hub has been off work for 13 months and no sign of going back anytime soon (praying he will in 2013, but we'll see). I TOTALLY understand your frustration with dh inability to comprehend his injury and consequences to not protecting himself from further damage or just from allowing situations where he is setting himself up for a set-back. My advice to you.... take a breath. Now, breath deeper. Chill out and realize there is only so much you can do in this situation. What you need to be is calm, quiet and firmly assertive when the time is right. Arguing will prove to be counter-productive (as it usually is). Our men are used to "pushing" thru any difficulty, sickness or injury sustained thus far in life, right? I know mine was. He believed sick days at work should be used when you felt GOOD and wanted to play on a beautiful spring day! It may take him time to understand that this is not something you "Push" thru. Print out the TBI guide if you haven't already. Have a copy available for him to read - maybe highlight some of the key points. Then send a copy to his parents - maybe they'll get a clue (maybe not thought! lol) I am about ready to give up. For how can you help someone who does not want to help themselves? Yikes! You need to read the TBI guide and watch the video You Look GReat on you tube. Then you need to really try to understand .... your husband has BRAIN damage. he is NOT thinking clearly or properly. His judgements right now are off. You need to understand this is a process of acceptance, understanding and healing - he will take TIME and you need to be by his side calmly supporting him whenever and however you can. Being blamed for his not feeling well due to the couch issue ---- not surprised. YOU need to understand that he DOESN"T understand what is going on. He most likely NEEDS to blame something else for his feeling bad because that is a whole lot easier to deal with than thinking "omg I have BRAIN damage". Can you imagine if it was your brain? You wouldn't want to believe it either! My hub still struggles with finding something to blame for a symptom or setback or whatever. We have evolved to him saying "I think such and such caused me to feel whatever". Then he'll look at me to see if I agree. I just calmly state "no, it's because of your injury". He doesn't like it, but is finally "getting" it. If your husbands healing takes a considerable amount of time, he will most likely be forced to accept and admit that he has a serious problem and will turn to you or others for advice and answers. I'd be happy to give you my email address if you'd like to stay in touch. I check out the forums every few days or so. Mark is right directing you to the support group by you. I'd really encourage you to check it out. |
oh yea - you mention in your "signature" that cognitive therapy has been suggested but you can't afford it. IMHO, you can do about as well by reading the forum and TBI guide and getting info about what to do or not to do. The doctors we have seen (many in diff areas of expertise) all play a rather passive role - bottom line is there is not much THEY can do for your hubby.
Time will help. Nutrition can help. Lack of stress (as you mentioned) can help. Cognitive things can be worked on in many, many ways. From books, word searches, games, work and life in general are all cognitive exercises. If he at some time is willing to use the computer, www.pogo.com is a great game website that has tons of free games and no membership fee (though you can join if you want additional games). There is also a site called www.lumosity.com that has cognitive based games to improve specific brain functions. It is free to try for 3 times then is pay based. It's a great site thought with tracking of how you're doing and suggestions for other games to help you improve problems areas. Take care! |
Amy's,
A common description of these husbands who want to push and fight through everything is warrior. The warrior style is what draws many women to their men. It just can get out of hand when your man become injured but wants to continue on as a warrior. Maybe it is worth a comment such as "I love it when you are my warrior but right now, your injury appears to be countering your effort to be a warrior. Can you slow down a bit for me so your injury can heal?" Maybe even add, " In time, maybe you will heal enough to be my full warrior again. I am willing to wait." With the right feminine touch, I would think most warriors would melt a bit. My best to you both. |
Hi,
Just thought I would chime in with the fact that in the first few months following my injury I did not understand what was happening either, and often tried to push through things that were too much for me. This may have been partly denial, but was also I am certain an organic problem caused by my brain injury which prevented me from having proper insight into what was happening. I have since found that this is common following TBI and is called 'anosognosia' or lack of self-awareness. It is a real problem as it stops you doing what you need to do to heal. For me, I needed people to keep reminding me when it looked like I wasn't coping. Eventually it got through. Luckily I recognised that people were concerned for me and didn't get annoyed with them. I hope everything goes well for both Amys and your husbands! |
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