After my husband, Hugh, sustained a severe TBI — and after the barrage of phone calls, food baskets, and visits from concerned family and friends — my daughters, my recovering husband, and I sank into the everyday life of rehab. We were deep in the learning curve and trying to find our way in a different, unwanted experience.
There were times when caregiving felt like a bag over my head, slowly sucking all the oxygen out of my life. Times when I felt so tired, so sad, so done I felt like screaming at the next person who looked at me the wrong way.
With a bit of shame, I did raise my voice and take my own stress out on other family members from time to time, and one day I recognized that I didn’t like myself and spoke to a social worker at Hugh’s rehab facility. Her calm demeanor and practical solutions were exactly what I needed. Here’s some of what I learned that helped me keep a lid on my angry feelings and reactions:
- What’s really bothering me? When I started to feel my anger building up, I learned to ask myself: What am I really angry about? Is this worth blowing up over? Is this a fight worth picking? Sometimes, I realized it was a minor thing that simply felt big after a long day, and I could let go of it.
- What triggered my anger? Is it always the same thing? For me it was the slowness of Hugh’s actions, how he was not motivated or able to figure out what to do next. I became exasperated by all the prompting I had to do. Part of what helped was realizing that this would change and improve over time. When I felt myself getting anxious because he was slow, I tried living in the moment, taking a deep breath, and saying to myself, I love this man. I want to help him. Finding a strategy that works for the one thing that always triggers your anger works.
- Using logic: Sometimes I felt like everything was caving in on me, like the universe was against me and I had the worst luck of anyone else in the world. Of course, this was a huge exaggeration; many people had harder lives than I did, so I would remind myself that this was just a hard day, maybe I didn’t get enough sleep (and I gave myself a small treat like a piece of chocolate or a bath) and I’d begin to calm down.
- Stopping myself from jumping to conclusions: After Hugh’s TBI, I could no longer anticipate how he’d react to situations and that frustrated me, so I would often jump to the wrong conclusions. Training myself to really listen to him and work toward solutions helped instead of harboring negative feelings. The same held true about my children. They had a completely different experience than I did, and a different perspective. I had to learn that this was just as hard on them in different ways and to not assume I knew how they felt.
- Self-awareness / Timing: I am a morning person, so I deal with things better earlier in the day. When we discussed difficult topics at night, I would be more likely to fly off the handle. I learned to use timing as a tool to keep my anger in check. Even if I wanted to approach a problem at night, I stopped myself knowing that the discussion might escalate, and we’d have better results in the morning.
When a loved one suffers a TBI, family life is disrupted in every way, and some degree of anger is normal. Recognizing that constant feelings of anger or the hurtful expression of anger are definitely signs to seek help. After all, if we can’t take care of ourselves, how can we take care of our loved ones?
Comments (15)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Leslie replied on Permalink
I'm the mother of a survivor of 3 liver transplant, has lived with one kidney, and also 2 car accidents. The second car accident left him with a TBI, the first car accident we were told of his seizure that caused the accident. With this front lobe damage at 38 years old he came to live with us almost 4 years ago. I've been through everything with him but this is the rollercoaster to beat all rollercoasters. I told most of the doctors that my son seems to be addicted to every addiction out there. We've gone from shopping addictions, pain pill addiction, eating addiction, tobacco addiction, and now the hardest one alcohol. No matter how many times we tell him it isn't good for him he'll find away to leave and go to a bar. He came home with a big gash on his head and bumps and bruises the night before New Years, he fell. He finally fessed up to his liver doctor that he has been drinking a lot and going to AA. He comes in like this and takes all kinds of medications from Blood pressure to Liver rejection medication and seizure medication. It's just scary, beyond scary! We need to find support because we can't keep going through what I call "Ground Hogs Day"... over and over and over, he keeps finding away to get to alcohol. We want him as healthy as he can be and need his support to help us help him.
Anonymous replied on Permalink
Thank you for sharing. I too love my husband deeply, 9 months ago he suffered a heart attack at the age of 43. He was in a vegetative state, but slowly started coming out. I am now his 24 hour care taker, while trying to sell a business and continue work for clients he left undone. At the same time i am running a church he used to pastor and trying to be a good parent to my confused teenager. I sometimes get angry at my husband, i dont show it or miss treat him, but i feel anger inside. Angry that i tried so hard to get him to care for his body before this happened. I would run on a treadmill while he sat watching tv eating junk. I would chase him around with breakfast which he claimed he didnt have time to eat, only to come home at night with junk food although i had made a healthy dinner. Angry that i would wake up at 3 in the morning only to see him wide eyed staring at the tv refusing to go to sleep cause the next episode was coming up. Angry that when i tried to give him vitamins he would say i was trying to poison him. His body finally could not cope with all the abuse, he had a blocked artery. Oh yeah he also never went to the doctor, he felt invisible. He is recovering slowly, but his behavior is that of a small child. I have been at his side every day, day and night, even when he was in the ICU. I lost so much weight and have put my whole life aside in order to help him. I have fought with family, doctors, insurances and facilities to get him what he needs. I love him with all my heart, but when i have only slept 2 hours sitting in the emergency besides him, or when i fear for my teen boy not coming home at night, of course i will be angry at him, at me, at the people that judges us, at the family that wants to make him run, when he is barely learning how to walk. I dont feel i am immature for feeling this way at times. I allow myself to feel sad, scare, angry. We also hurt physically and emotionally. How do i get over myself, allowing it to happen, wiping my tears, spraying on my favorite perfume, and kissing him while telling him how much i love him. Am i mean? No i am only human.
Anonymous replied on Permalink
Wow, I think a person getting frustrated at their loved one with a tbi...has more problems than the care recipient. I suffered a chemical brain injury caused by a careless Dr, lazy pharmacy and a controlling fiance. My anger that this was caused by anybody except me makes me put fists through walls. Try living with the said injury and count your blessings and pray there is no God, because if there is you are in serious trouble. You know what I mean by that, grow up and have a heart...you think the person is upsetting you on purpose?! Grow. Up. Peace
Kaleigh replied on Permalink
Sorry this happened to you, but you don't have a clue about caregiving - for probably the rest of your life!
joey replied on Permalink
you obviously have never been a caregiver.
Anonymous replied on Permalink
My husband has had a series of concussions over the last few years. We are in our mid 50's and have two grown children and a 10 year old son. My husband refuses to look into treatment for his CTE. He has become a different person. I'm sure that is part of the difficulty for the families living with CTE. He was diagnosed 3 years ago and is getting progressively worse. He has become verbally abusive to me, often in front of our children and his parents. He has a different reality and believes we are the problem. It doesn't help that he drinks alcohol daily. I'm concerned for our 10 year old son. My husband says and does things to annoy him or is often a bully to us both. I don't know how to help my son. My husband frequently says things that are untrue, but perhaps he believes. My son tells me "dad is not telling the truth". My husband expects me to choose his side when they have a disagreement or he says something hurtful or untrue. I've tried my best to remind them both that we are a family and we are in this together. He sees that as betrayal. In the mean time I am reluctant to leave them together not knowing what he might say (regularly says inappropriate things) to our son. Words can be so hurtful. I am walking on egg shells 24/7. I do take things a day at a time. We've been married for 30 years. I'm afraid of the emotional damage this is causing our son. Anyone with similar experience that can offer advice would be so greatly appreciated.
Kaleigh replied on Permalink
There might be something else going on here. He needs to see a Dr. now. If he refuses, you and your son have no choice but to walk away from his abuse before it becomes physical. It is not healthy for either of you. I wish you the best.
Anonymous replied on Permalink
How do you cope with being pushed away?
Anonymous replied on Permalink
My grand had Idiopathic Intracranial Hypertension. I am the care giver: medical liaison, logistics secretary, chauffeur, financial consultant (juggler), insurance interpreter (have on-hold down to a science), prescription manager, dietary guru, and research genius. The only time I get angry is when people, who have never even heard of IIH, offer suggestions on treatments and "cures". I swear, the next time someone recommends a chiropractor, special drink, ointment, aroma therapy or other voodoo, I am going to count to 100 and; if they are still there, I will whack them in the head with an axe (ordering one off of amazon) and see if they can conjure up a "cure" for their headache.
Anonymous replied on Permalink
As a care giver of a T.B.I patient, I have to say "get with it". I have been looking after my son since he was injured with Diffuse Axonal Injury in 2005 when he was 10yrs. I hear you when you say you need help to get thru times but if you let it get to you you are going to burn out and I believe that would be the last thing that needs to happen. It is true that your outlook on life will have to change and you will have to give up most of your personal interests but hey how important is the person that is injured to you anyway? I looked at it this way, One day at a time. Believe me when I say that your life will change and if you fight it your gonna fall prey to the poor me attitude that most people have these days, so heads up, read up about the injury it self, don't wait to be told by a nurse if you don't have to and realize that if it is too much to handle, you wouldn't be left with the responsibility
Anonymous replied on Permalink
The anger I felt towards my husband after his TBI was not something I expected. I have gone into counseling, which I wish I had started much earlier, it would have made things so much easier. The last year since his TBI has been such a hard year, had I gotten help sooner it would have made it better. Learning to just take a breath and laugh was such a hard thing for both of us to relearn, It still is a day by day adventure, but hearing others experiences and how they dealt with it is so comforting, Thanks for sharing,
Anonymous replied on Permalink
This is tremendous advice. Those that live without TBI in their lives could take note, too. Many times, our daily struggles and battles take their toll on our ability to deal with our loved ones...so keeping in mind these tips could help us all. Thank you. Terry from Vermont
Anonymous replied on Permalink
I am a caregiver for my 19 year old son. He is 4 years out. He had a severe TBI. He is great in so many ways. I find myself getting really upset and frustrated now because he won't cooperate anymore. Maybe he is tired of hearing the reminders. I get that - I am tired of giving them. He has behavior issues that causes him to harm himself. It has been a constant battle for 3 years. He has been more coorative in the past but it is really bad right now. I can't keep him safe, he won't initiate any activities and constantly looks to me for what is next. I know this is normal but I am just tired. He doesn't sleep at night so neither do I. He needs attention - not medically - just to keep him safe. It is so exhausting. I like hearing from other TBI survivors about this. My son will tell me how he feels but then doesn't remember what he said a few minutes later. I love my son more than life itself. I just want to help him get better.
Anonymous replied on Permalink
As someone on the receiving end of this issue, I got angry today because the person giving repeated prompts (my son in this case) was only speaking, and not paying attention to what I was doing or saying, because I had not only responded to the initial request, but I had given him several status reports on what was delaying me when I heard another annoyed "reminder." I told him I understand his frustration with how long things take, but no one is ever more frustrated than me, and while I appreciate his help, I don't appreciate mindless repetitive nagging. (not what I wish I said, but that's about it)
Anonymous replied on Permalink
Thank you for helping your husband and kids. I have a TBI. My husband left me with my young children to care for four months after I came home from a six-week hospital stay. Had he only waited through the irritations you mention, their lives would still be in tact. I am very close to "normal," with great workarounds for the ways I am not. The TBI was not really detectable to anyone a year later. I am three years out now and think the huge contrast from constant attention and help for six weeks to no longer being the focus of everyone's attention did him in. This advice to families who go to hell and back is appreciated. Thanks again. Onward, Dina Elizabeth Hovde