The Not-So-Secret Confessions of the Caregiver

The Not-So-Secret Confessions of the Caregiver

One thing I readily accept after more than five years as a part-time caregiver for my father and 15 months as a full-time caregiver for my husband is that, try as we might, none of us are mind readers. This is especially true after a brain injury.

In an instant, the one person who used to know me better than I knew myself — my husband, TC — lost his ability to anticipate my needs and feelings. Tasked with getting himself healthy again, he no longer possessed the mental or physical energy to understand me in the way he used to. Losing this connection with the person I trusted most has been one of the most painful, isolating experiences of my life. As a caregiver, I know I’m not alone. Although many of us rarely get a moment to ourselves, we often feel as though we’re living a life sentence of solitary confinement. We wish people could see beyond the brave exterior. We wish we could better articulate our own needs. We wish everyone in our support system were capable of understanding the tough choices we’ve been forced to make. But at the end of day, we’re simply too tired to explain ourselves.

If I could hand a brochure to the people in my life explaining what it’s like to care for someone with TBI, it would probably read something like this:

1. I didn’t sign up for this gig

Now, don’t get me wrong. That doesn’t mean I’m not willing to do the hard work. It doesn’t mean I won’t stick around or refuse to enjoy the happy moments ahead. It simply means I don’t have to love every moment of this experience. I’m entitled, now and then, to feel scared out of my mind or overwhelmingly sorry for myself. I promise that in time I’ll rise above these feelings, but please forgive me. I’m a caregiver, but I’m also human.


2. Brain injury is contagious

It should be clearly stated that my brain also stopped working the day my husband’s was attacked with a baseball bat. Shock and stress do crazy things to one’s brain, including obliterating one’s memory. I may make plans and forget them or promise to do something and then fail to do it. It’s not that I’m irresponsible or that I don’t care. I’m just juggling a plate of such epic proportions that it’s a wonder I remember to get dressed in the morning. So, if you notice my acting flaky, it’s probably a sign I could use some extra help.


Which leads me to a very relevant and important point:

3. I don’t always know how to ask for help

One of the problems in learning how to live day-by-day or even hour-by-hour is that you can’t always anticipate your own needs ahead of time. In the weeks after TC’s injury, I was overwhelmed with offers of support. Unfortunately, I didn’t know what I needed until five minutes before I needed it. I felt guilty calling people last minute, so I often just took care of things myself. For me, the most valuable offers of help have been the ones that free up time, my most valuable resource. I call these “no strings attached” offers. They don’t require me to do extra coordinating or to go out of my way or even to send a thank you note. These offers are wonderfully selfless, which, in themselves, are a gift to the guilt-ridden caregiver.


4. Taking care of myself is a group effort

I don’t know how many times I’ve been reminded over the past year to take care of myself. It’s excellent advice, really, but it took a good long time for me to give myself permission to do so. Ironically, when I did start returning to exercise, getting more sleep, and sneaking in a few minutes of relaxation here and there, it didn’t go over so well with a few of the folks who had been pushing this advice. For me, taking care of myself means giving myself permission not to return people’s phone calls or e-mails right away. It means learning to say “no” to some invitations and giving myself quiet space away from the world. To truly support a caregiver in his or her self-care, it’s critical to ease up on your expectations of this person. Doing so will lift the caregiver’s load enormously.


5. I’m not perfect and I sure wish there was a manual for this

There are a few small things I wish I’d done differently over the past year, but for the most part, I’m proud of all I’ve been able to hold together. Beyond helping TC in his recovery, my biggest goal has been to stay present as a mom. Every one of the million decisions I’ve made over the past year may not have been the right ones, but when I witness how well-adjusted and happy our son, Jack, continues to be, I can sleep easier at night. If there was a manual for how to handle TBI, my copy clearly got lost in the mail. All a caregiver can do is to try his or her best and ease up on the self-judgment.


6. Brain injury doesn’t go away

Trust me, I get it. Some people may be tired of hearing about our brain injury woes. Believe me when I say I wish those days were behind us. But even with a remarkable recovery like TC’s, there are lingering health concerns, psychological issues, and fears. Our life will never go back to the way it was, and neither will we. Over time friends and family will have to adjust to a new way of interacting with us. We hope you’ll like us for the new people we are, but we understand if you miss the old us. We miss us, too.


7. Making lemonade from lemons is an art form

Over the course of the past year I’ve fielded a few off-hand comments about our lives being “ruined.” I have to admit that word “ruined” stings a bit. Our lives are different now, but I refuse to accept the idea that brain injury is a life ruiner.  If anything, brain injury has provided us with the challenge of living better than we were before. Living better is a goal TC and I practice daily and it requires some serious mental stretching. We may not be able to put this attitude into action 24 hours a day, but it’s certainly what we’re working toward.


It’s easy for caregivers to bottle up their frustrations. With such a demanding role to fill, we are apt to put our own needs last. And as much as we sometimes wish others could read our minds or occasionally walk in our shoes and feel these demands themselves, our only real option is to stay honest with the people in our lives.

It’s my hope that in sharing our secret caregiver confessions, we can strengthen the lines of communication, benefiting everyone affected by brain injury.

Comments

Well done for sharing your innermost thoughts and fears. It is indeed a solitary experience that we did not sign up for and mourning the loss of the person you loved and shared your life with, does not go away. But what choice do we have? We either stay and fight every day or walk away. I could not do that and leave my husband of 44 years to be looked after by strangers in some sort of home. I am blessed to have wonderful family and friends who rally around me in times of need. But each day without him is tragic and sad. He would not want to be this way, but I have to believe, if we keep fighting and working, he will regain some of his life again and be almost the same. Right now he is progressing but we still have a long way to go. It is good to know I am not alone and your excellent piece give great comfort. I wish you and your husband great health and recovery

This was really well written!

Thank you all for sharing. For 6 years I have doted on my wife. Any question or problem presented I have jumped on immediately, anything she wants to do I stop what I am doing to help her or take her somewhere. She is about 85% the person she once was. She is very strong and determined (stubborn). She works full time and struggles with tasks that were once easy for her. I go to bed alot of nights scared that the event (aneurysm, stroke) will happen again. She was in the hospital for 6 weeks between ICU and not. I lived at the "Mark Preece Family House" just down from the hospital for this time.I have currently taken 6 weeks off of work due to stress from all sides. I am now just beginning to take time for myself and enjoy life. I do the best I can and I am just learning this is all I can do. Usually its the guilt and fear of allowing time for me that makes me question whether I am a good person or not. I am so afraid to go live life incase I am not with her if there is another aneurysm/stroke. One day at a time. I am beginning to take care of me and finding she is supportive and okay when I return home.
My husband was hit by a semi-retired on a major highway over 20 years ago. He was unresponsive and brought to a local hospital. He had many fractures and a severe tbi. After 9 days in a coma he began the process of rehab. He did not know me or his parents but always knew our children​. He has permanent memory loss. He is now ehibiting a lot of anger and agitation. We argue all the time and he has even hit me. I really don't know what to do anymore. He sees a multitude of physicians but no one for his TBI. What can I do???
Perfectly stated and exactly how I feel! THANK YOU for making me feel like we're understood by someone!
Wow your list of 7 things you would tell people is so right on. I feel as though you could read my thoughts... thanks for sharing
Without telling my whole story--I believe there are similarities in all of our situations. What is so hard for me is being physically exhausted by this 24/7 caregiver job. We all have to grieve for the life we used to have. I miss the man I married. Because of his stroke, the man who used to be my lover has become my child. But it is wonderful to know that there are others who understand how hard it is!
My husband's recovery was good. He is mobile and independent. My biggest problem is the indifference and the inability to provide any emotional empathy. If you ignore someone that means you are aware of them and have made a conscious choice to ignore them. Indifference means I don't register to him. It's very hard for me. Do others go through this? How do you handle it?
My husband had a vehicle accident April 18, 2016. His face and forehead took the entire impact. He went to a Band-Aid station type of hospital, who did several CT scans. They told us all about all of the fractured bones, and the air pockets on his brain, and SENT US HOME THAT DAY!! He was off for 6 weeks, the ENT told him he could go back in 2. We have visited this same ENT since then, who we have told, that my husband has changed, he can no longer smell, taste, SLEEP (oh how I wish he could sleep) and over the past 3 months, he has changed in personality...SOMETIMES. The ENT assured us that he would see a neurologist. We are still waiting for that referral, since APRIL! Husband gets up EVERY morning yelling at me for the smallest of things. Last month, he began yelling and ran at me and hit me in the face. I work in a professional setting and had to take the rest of the week off to allow my swelling to go down. Once it happened, I stayed away from him for a few hours. I walked 5 miles. He spent the next day crying and apologizing and telling me he didn't realize what he was doing, until after it happened. I know this, and knew something was terribly wrong, other than just sinus and forehead fractures. We finally saw a different ENT today, This is the first time I have heard the term TBI. When I also heard the words, "I was surprised after seeing your scans that you are actually coherent," and "PERMANENT", I fell apart. He will always be like this? How to I avoid triggering his anger, how do I cope with the terrible things he says to me, when I know it isn't him, but the TBI? It still hurts, the things he says, even though he apologizes after the fact. He requested that I not "make a big deal about this with the family" "they don't have to be burdened with this" He even made off jokes, in the ENT's office that I could no longer hold him responsible for being a jerk, when he is, cause it's TBI. I know he is trying to make light of it, and internally he is ripped apart, but I don't know what to do, our attorney mentioned a possible neuropsychological, but their clinic also has the title "behavioral" I am so scared as to what his reaction will be if I even attempt to suggest it. I don't know what to do, but to keep quiet and take his outbursts, and keep away from him when he acts as though he would be violent. What do I do? I will not leave my husband, I love him unconditionally. I am just lost on how to help him, and us get through this.
Since my wife's TBI a little over 2 1/2 years ago at the age of 41 there hasn't been 1 day I recall that I have not drank at least 12 beers to a case a day. It's just easier. I still take care for her 100% and love her 100%. There is just no sexual desire from her since. We have been together 24 years and both kids have since moved out leaving me alone. I know the drinking isn't good for my health but it's all I can do to stay sane.
Thank you for your story. My husband's TBI was before I met him. So I have not had the long haul you have but your statement "I did not sign up for this" hit home I would say I did not realize how much TBI affected the survivor and spouse.
Let me just say,your story was very informational. I am married to a 56 year old male. Who suffered a TBI when he was 17. I knew about the TBI when we got married. Did not realize how much it would impact our lives.
Thank you for this article, my husband suffered a TBI in 2014 during a hijacking. It gives me strength to know that I'm not alone. I had to become a mother and a father to a 2 year old and 4 year old, it was not easy until my sister moved in with us to help with the kids and at least now I'd say my life is getting back to normal.
This page is always open on my tab to remind myself I am not alone, and gives me the strength to get through today and the next day. It never gets easier, but we can certainly try to make the best of what we have. Thank you for this perfectly articulated reflection of being a caregiver.
I am so impressed by many of the stories I have read here, and what a lot of you are handling. We are 25 years post severe TBI, and I still don't get it. Some times my husband functions so well, and then he does something so out there I can't believe it. However compared to what many of you are dealing with Mike looks like Einstein. Like most of you I have become a parent and handle almost everything.I feel so badly because I get stressed and frustrated when he glitches. He has very little problem solving ability, short term memory issues, and aphasia.I wish there were ways to help him compensate for that. Often with friends in conversations, he says things that are totally irrelevant, and though the people are well aware he's had a head injury, I get embarrassed. I feel like such a bitch sometimes. As we mosey down the road into old age, I am aware that he is at increased risk for Alzheimer disease, and I find myself thinking "Great, so I get to handle that too" like it's his fault. I know so much on an intellectual level, but on an emotional level, it's hard for me to handle. I feel so selfish, I know he can't help the things he does, and I know he realizes he isn't the same person, yet he deals with that everyday. To anyone starting this journey I will tell you to stay in a rehab program as long as the professionals tell you its needed. Mike seemed so together and wanted to get back to work, so I gave in to him. Big mistake. Unable to work and fired down the road just as the ADA came into effect, however, that was not really much help. I also feel that if your loved one is acting out and refusing treatment, it may become necessary for you to leave so that they realize you can't do it and you mean it. I was packed to leave when Mike was an alcoholic, and the only reason I didn't go was he agreed to rehab. Unfortunately only 50% of marriages make it post head injury. Everyone close to this situation-adults and children are affected by and you must do what is best for you and those you love. Be strong
Very helpful to me personally, thank you so much for this article.
Wow thank you so much for this post
Thank you for your candid reflection of your life with TC. My boyfriend was attacked at work and has long term issues. I love this man more than words can say, I have felt the same sting from my sister who doesn't understand the challenges of loving someone with a TBI. We deal with sensory input issues, neuro fatigue, time management issues and his avoidance of touch when he is over stimulated from work. I can't say it's easy for me, but as a nurse I am really trying to understand and support him all I can. This is difficult when my sister, whom I stay with when I'm in town says things out of ignorance. (I'm a traveling nurse and my sister and boyfriend live in the same town.) I have told her some of his issues not all because he is a private man and trusts me to keep much of his issues close. My sister just sees that he is late for our meetings and that all we do is text we never speak on the phone. She also doesn't understand why he becomes easily overwhelmed with certain situations. This being said, I love this man and will not walk away from him, I did that once when we were young and I missed him like a part of myself, never again....SH
Thank you...I needed a good cry and you gave it to me. I think this is one thing you forgot. "A Cry" . I don't do it a lot, but when I do, I usually feel better afterwards. I suppose it's a pity feel sorry for me cry...but dealing with my husband and the repeated questions, anger outburst's and making sure he's taken care of...I do deserve this cry. Thank you.
Thank you, I read that with my mouth open... I'm still not sure exactly how I feel most of the time... I'm still numb & in shock... my partner (43) had a brain surgery go horribly wrong he remains in a minimally conscious state he has been like this for 2 years 3 months now. I feel alone altho I have some good friends but ppl even good friends and family go on with their lives feeling like they leave you behind. It makes me feel stuck sometimes. My partners family have not visited him or supported him or me it feels like theyve cut the ties and left us to float away.... a long way away. I love him so much I miss him so much just to hear his voice again would be a blessing..... I will take care of him for the rest of his life. What that means for my life well that remains to be seen.. it is a process that cant be rushed or predicted.
Thank you for perfectly articulating what I have been able to do so.
I am visiting my elderly parents. I live in another country and it is wrenching to visit my parents who are completely isolated and increasingly on a downward spiral . Since her brain injury my mother has become alcoholic, suicidal, frustrated and at times violently aggressive. It's like visiting an island in a sea of insurmountable misery. There are very few supports for either and even fewer resources, especially for dealing with concurrent issues (tbi, aging, alcoholism), and I've been surprised that so few stories mention anger and alcoholism - which I'm certain are common problems.
My god I really thought no one knew. Thanks for the encouragement that I'm not the only one.
I am the wife of a stroke victim. The stroke occurred when our children were preschool age. It is so hard to ask for help, and offers of help dwindle with time. It is also hard to tell which offers are sincere and which aren't. Most aren't. I wish people who are sincere would continue to follow up with time, every so often and repeat their offers and suggest specific things they could do, to know they are still open for calls. I will write a list of dos and don'ts in case anyone ever reads it. 1. If the family or the patient chooses to be positive about the recovery, it is not your job to come in and try to encourage them to "be realistic". The "pro-realistic" types underestimated the power of prayer and hard work in our case. 2. If the patient and family are now lower income do not try to find out how they are supporting themselves out of mere curiosity. If you want to give them a financial or other gift, do so, but without being nosy. Having curious people ask about your finances is nervy and rude. 3. Also, if you do give the family or patient a birthday or seasonal gift, please give a gift you would be proud to give to a friend, not a bunch of used stuff collecting dust in your dresser or dollar tree stuff. It really hurts to get some junky used gift or dollar store stuff, especially from someone well off who is a world traveler, true story here. 4. If you do offer to help, please don't grumble and complain, criticize our tools, judge us, or gossip about us afterwards. 5. Please don't ask how the patient is and get that deer in the headlights look when we answer because we thought you were interested. Just say hi, good to see you, if you don't have time. It hurts when someone from church or a former colleague can't stand still for a one minute update. (To be continued)
I have so many comments and thoughts it is hard to know where to start. 1. If you are a church, business or organization, please do not embarrass the people you serve with meals, food, gifts by taking their picture and posting it online, in a newsletter, etc. It is embarrassing beyond belief even if the picture is taken from behind or cuts off our faces. Please also don't resolve this by asking us if you can take our picture. When you have done something for us we feel obligated to say yes even though our brain is screaming no. 2. If you are an individual or organization looking to help a family with a family member with brain injury now is not the time to clean out your drawers and regift every old candle, lotion set, jewelry that you have been meaning to donate to charity as well as all the cheap dollar store stuff you can find. It hurts to realize that your reduced income and social status as a family with a brain injury patient means you are not worthy of a nice new gift, such as you would give to your well employed friends. Dusty old candles and separated lotions do not make us feel special. 3. Don't tease us about stuff we don't get to such as the car that needs badly washed, the needed haircut, the left up Christmas lights. Haha, not funny. Try having your life crumbling around your feet and see how you appreciate such comments. 4. Just because we have school age kids doesn't mean we don't need help. Our kids are suffering too in ways you can't imagine. They also don't have the benefit of parent teaching them all the finer skills of lawn care and house maintenance. Plus some kids are not coordinated or mature enough to use electric equipment without hurting themselves. 5. Unfortunately I would say many people are unable to help without gossiping or being judgemental. If you help please do so without complaining to the recipient or gossiping about them afterwards. And yes this really happens. 6. I would have loved it if someone would have offered to toss a football around with my son. There aren't any kids nearby and it helps so much to have a teen or adult teach you the finer points of sports.7. A friendly call occasionally asking how we are doing would be nice. I promise not to talk your ear off and will even ask about your life. 8. If you see us it is fine to say, hi or hi, good to see you. It is very hurtful if you ask about our injured spouse and like a dummy we respond with information and you get that deer in the headlights look and start backing up, like oh, no, I really didn't want to know. This hurts even more if you are from our church or a former colleague that we used to work closely with and we thought you might have actually cared a little. 9. Don't get that concerned look on your face and kind of breathlessly ask us how we are making it financially. If you want to give us a gift then give it, if not don't, but please don't pry about our finances by acting concerned. More likely than not we are struggling anyway. 10. Don't expect so much from us. We spend our days doing things that you couldn't imagine. Days can disappear when our loved one is constipated or the opposite, meds are low and the doc doesn't call in a refill, the insurance didn't go through, the hospital coded wrong and we get a megabill, we have a middle of the night ER run and sit up all night in a hospital chair. What is appreciated besides a friendly call or card, a gift card, treats, outdoor help, an offer to drive when we need help, respect for us and our family, offers to include our kids in an outing or activity with yours. There are plenty more but these are a start.
Thank you for the article. No one truly understands TBI unless you live it. 19 mths ago I fell on my head and just now recovering. I thank God everyday for my life. It hasn't been easy but I made it. My injury has opened up my eyes and heart to what is truly important in life. I am now more laid back and don't worry about the little things. My husband was detrimental in my recovery and I will always be grateful to him
I am a TBI survivor, and not only my own caregiver, but also my husband's caregiver, as well. He has Aspergers Syndrome and never could anticipate any of my needs or feelings. He could never respond to my pain or calls for help when I needed it. His quiet demeanor, staying to himself, is his way of "helping." He brings home the money, and expects that I will take care of everything else, from bills to shopping, cleaning, cooking, organizing, house maintenance, everything. This has been way over my head for over 20 years, since my injury. So, I ask you: Try doing it all with a brain injury and no support. Each day is an extreme challenge. I am still trying to find my way. Count your blessings. Life might not be perfect, but it's a lot worse for a TBI survivor. Caregivers are blessings. (I wish I had one.)
It would be so nice if so-called health care agencies in all of North Eastern North Carolina would read this. But instead all I get is denial of my family member's brain injury and excuses that there is "no funding" for support of people with mild TBI -- and "you have to prove" it was a brain injury when everyone out of state says it's a no brainer that fractures of the chin, subcondyles, upper mouth and teeth - from hitting the head on a ceramic tile floor - is a brain injury. I not only am having to deal with the injured person's denial of TBI but all the so-called health providers' denial and their mistreatment of this person by addicting her to benzodiazepines -and then taking her off COLD TURKEY -- and then I am told -- to just "forget about TBI." Honestly I think I could deal with the TBI -- if I just didn't have to deal with the incompetence and denial and malpractice of our local health care system.
I cried when i read this because you have put into words exactly how i feel . my partner of 30 years had a brain tumour removed last Oct , which resulted in an ABI . it resonated with me when you said you don't know how to ask for help at times . More than anything else this has made me feel not so alone . thank you .
Thanks for a great article. I think I will cut and paste portions of it and send it to family and friends. Even though it seems like we have no friends. Oh we still get the occasional call but the isolation is deafening. My beautiful wife suffered a severe TBI almost 3 years ago. she is unable to walk , speech is limited so its hard to say how much she remembers. I am her full time caregiver and I am exhausted . Just yesterday I determined to start doing some things for myself . Hoping I can follow through on it. I got sick of hearing from day one you have to take care of yourself. That is good advice but impossible to do when you are drowning in grief. Anyway Thanks

Thank you for the well written piece, and for this site.  I stumbled upon this just looking for a way to put my frustration to paper and found it here.  My fiancee' had a severe trucking accident 11 months and 2 weeks ago., at present he has not returned to the house having spent 6 months in hospital and now six in neurological​ rehab.  

I can already relate to all the pain and loneliness i have read about here.  And from talking to friends and other people about people with brain injuries the worse is yet to come/

I beg to differ. No one can imagine the fear of not knowing whether your loved one will live or die for days at a time. Its hard to imagine what condition he would be in when he came out of the coma or if he even would. Then will he talk and after that will he have use of his body.

As of today the only thing that has truely returned is his speech. But sometimes that seems pointless because his short-term memory is totally shot. He does remember things from 4 or 5 years ago, which means he remembers all of his loved ones and the life of those long ago days.  He also remembers that he loves me and wants to marry me.  Although right now that is impossible because he cant remember where he is why he is there and is just kind of remembering what happened to him. 

He doesn't remember us getting engaged last year or moving together to our apartment. He had the accident 2 weeks after we moved in.He doesn't remember that his 12 year old son whom i am caring for  is 12!! He thinks he's seven and sometimes five. He didn't remember the ring he gave me or anything to do with our life the last 4 years. This is heart wrenching and has caused me to shed many tears. 

After being a month away from being married i am now relegated to the background as i have no legal say on any of the matters that affect our lives. i cant make any decisions and our bills are paid by his guardian.

If this is the beginning i cant imagine the road ahead. This has been a long year, and for the most part i have felt like i was in a bubble. Sometimes i feel hopeless and sorry for myself and this whole situation. Itry to keep moving and keep a positive outlook and hope for his return so that we can at least start on our "NEw NORMAL" life.

It is nice to know other care givers struggle. My husband was in a severe car accident 14 years ago and sustained a moderate closed head injury TBI. He has come such a long way and I thank God he is still functioning pretty well. When the neurologist told him 12 plus years ago that "this is as good as it gets", I was mad and thought, We'll see about that. Well, he was wrong and my husband has improved ten fold since that doomsy prognosis. With that being said, however, daily life does bring challenges. Our children are grown and we have two beautiful granddaughters that my husband adores and wants to spend time with every day. The TBI creeps into our lives daily, however and my greatest frustration comes from his constant worry of "what if's" and his control issues. In reading so many of the posts, I haven't read many about control issues. My husband has virtually taken over my kitchen, loading and unloading diswasher, tidying up until everything is spotless, yard is immaculate, tells me when to put a load of wash in as if I can't think for myself. Most may think, well that sounds pretty awesome, but in reality, my world has been stripped of things I actually enjoy. I don't mind the help, just not being told how to do something I have done for my entire adult life, as if he is the EXPERT in everything that is anything. The latest is making an inappropriate call to my sister which prompted me to read some other caregivers stories, telling her and husband not to come visit and lying about the reasons. He fabricates lies to soften the blow but the feelings hurt are irreparable. My sister was crushed and I have a hard time explaining to her the irrational behavior. This is only one of the many inappropriate phone calls he has made and telling them not to tell me, so he is devious in his thought process. Or telling my grown daughter and mother of two, that his strongly disapproves of something she is planning to do as if he is the father of her children. I could go on and on, but would love some feedback as to other inappropriate behaviors that chip away at the marriage of two people We have been married almost 40 years. Life gets harder and more complicated as the years go by. Thanks for the encouraging posts however

I relate to all I am reading here.  There are many of us faced with taking care of a loved one with TBI and I am happy to see more and more of us sharing our stories and feelings with each other.

My husband suffered a TBI in a MVA in a military vehicle while stationed in Germany in 1976.  As a result was left with a seizure disorder and mental health issues.  Although he struggled to accept his seizure disorder and with bouts of depression, etc., he was able to manage his life.

In 1992, he went down in an episode of seizures and life for our family has never been the same.  My husband began experiencing great difficulty in remembering how to do things that he had been doing daily.  He could no longer work or drive or relate to people around him.   At the time our sons were twelve and four. 

I know everyone’s story, while different, can be similar in a lot of ways.  So I would like to share some of what I have experienced throughout the years.  I have found there are many ‘walls’ that I have come up against.  Some hit me right out of the blue with no warning and others crept up slowly.  But, once I realized what the ‘wall’ was, I always manage to find a way to climb over it.

One of the highest walls had to do with memories.  Our lives are the sum of our memories or so I have heard.  But what happens when I spend my life with someone that ‘invents’ what he can’t remember.  You might say, “No big deal” or “It’s just a little thing.”

Wall:  None of my memories matter.  

Because while I am remembering, he is inventing.  While in no way a deliberate act of deception, he is literally ‘making up’ memories.  Filling in the blanks for himself.  This is how he survives. 

How do I survive when I hear these invented stories knowing the truth and sitting quietly while he states with vivid detail what never happened?

Wall:  What is the point of making new memories when they are going to be changed anyway?

My husband believes what he invents about the past.  To him it is all true, real, actually happened---it is his reality.  If I try to correct or prompt him to remember he will argue, become irritated and angry.  Then from anger to hurt and frustration.  To keep things happy I let him believe what he wants and thus, ‘his’ memories become life.  Sounds like a simple thing to do, right?  It is until you hit the wall.

The issue of memories is especially difficult for me when meeting new people and my husband is excited and wanting to be entertaining.  People ask questions and my husband invents answers.  Do I say to them, “You can believe this but not that,” and add, “If you would like to be friends with us just know you will always have to watch out for my husband.  Make sure he doesn’t get hurt.   Make sure he doesn’t get into any trouble.  Oh yes, be aware his stories will change.  Oh yes, and none of this is his fault.  And none of this is deliberate or in any way meant to deceive.”

Wall:  What is the point of meeting new people?  Why would anyone, who is not related to us in anyway, take on such a relationship?

My husband does possess good manners and always wants to be entertaining, but there are times when he says something inappropriate or does something that just flat pisses someone off.  We have been asked not to return to a restaurant, escorted to the door at a western clothing store. Oh yes, Christmas shopping is not worth attempting anymore because my husband tends to become paranoid when in large crowds and thus ends up being followed by store security.  I thank God for online shopping. I remember one time when I literally had to stand between my husband and another man and say, “He has had a head injury, please just walk away.”

Making plans is something I tend to shy away from.  Going out depends on several things.  Is my husband well rested and in a good mood?  How much do we really need what we are going out for?  And the BIG one, do I feel up to a confrontation today?

Wall:  Is it really worth going out today?

I feel it is necessary to mention intimacy.  I am not talking about sex which ended for us years ago.  I could no longer handle the childlike behavior he developed toward sex. That being said, I feel his behavior was a result of his lack of ability to ‘put it all together’.  Such as, how to begin or what to do next, likes and dislikes, things like that.

The intimacy I truly miss is lying in bed at the end of the day and having someone (who really knows and understands me and who truly understands what I am saying) to talk to. 

Wall:  I have lost that ‘someone’ forever.

A few days ago we were helping our son move into a new apartment.  The apartment he was moving from was downtown in a major city.  It was after dark and we were loading a desk in the back of the pickup when a woman walked past talking on her cell phone.  I suddenly heard my husband’s voice trailing off and immediately turned to find him following and talking to the woman who was clearly not talking to him.  I had to stop him and walk him back to the pickup.  He had no idea what he had actually done.  No idea that it was inappropriate, that it was wrong, or what the result of his action could have been.  When the woman walked past, my husband assumed she was talking to him and he began talking to her as he followed her toward her car.  The only thing I could do was stop him in a manner that let her know there was something wrong with him, I was watching him and in control of the situation so she would not call security.

It took some time to get it through to my husband that he did not know the woman, that she was not talking to him and that it was wrong to follow her.  Especially in a big city in a dark parking lot.

He thought she was the person that was working at the lobby desk and that she was talking to him even though she never looked at him and was hurrying to her car.

Wall:  No matter how long it has been, my husband still has to be watched.  He cannot be left alone because no matter how well things are going, at any time he can lose all logic.

Our oldest son recently called me aside and asked, “Mom, when did you accept the fact that ‘Dad’ is never coming back?”  He went on to say that it was obvious that I am no longer expecting him to ever be the person he was before.  He asked how I did it, wanting to achieve the same acceptance himself.

Our oldest son had twelve years with his dad.  He remembers his Dad coaching his little league team, taking karate lessons together, teaching him how to shoot a bow.  Our son went to school one morning and when he came home everything had changed.  I know I will never fully know what effect this had on our son because he tries to protect me so much.  But even now (he is thirty-four years old) I can still see the pain and hurt in his eyes whenever he talks about how things used to be with his Dad.

Our younger son accepts the way his Dad is.  That said, he has never known him any other way.  He does not have the feelings of missing what used to be.  He has grown up (twenty-six years old) knowing he had to always ‘look out’ for his Dad.  To make sure he was ok and safe.  He has stated in the past that if anyone asks he tells them he grew up in a one parent household.

I cannot say if staying with my husband was the right choice for our sons or for me.  I can only tell you about our life.  Maybe at some point, our sons will share their story. 

For now, I am more relaxed.  ‘Events’ that occur now are not as devastating to me as they were in years past.  But it wasn’t until our son asked that question that I realized it is true.  At some point I accepted that my husband now is not the man I fell in love with.  He is not the man I married.  He is not the man I had children with and he is not the man I planned to share my future with.  And it’s OK. 

Do I still love him? 

I did marry him. I did have children with him.  I will always take care of him.  This being said, I will be sixty years old this year.  My outlook and desires for my life are not the same as they were in my 20’s, 30’s, or even in my 40’s.  My children are adults now.  Life is easier now.  I have climbed walls and am now moving forward.  At some point, I am not exactly sure when, I decided to stop waiting for those little sparks of ‘the man I married’ to appear. 

I no longer look for him and I forgive myself for that.

I cannot begin to thank you enough for this article. My husband was in a terrible motorcycle accident several years ago and the doctors never once told me he had a brain injury. Not even a concussion! I guess since it wasn't life threatening it wasn't important. He was rear ended by a motorcycle then when he tried to get off the road after being thrown from his motorcycle, he was ran over by a different motorcyclist. As you can imagine he sustained an enormous amount of injuries. Nonetheless about 2 months after his back and limbs were healed and he was managing good on his own he began acting seriously different. He was not the man I married 6 years prior to this. He got so angry one time he acted out violently and almost hurt his mother at which time I promptly took him to the doctor. He was referred to a neurologist. With him being a veteran and diagnosed with PTSD she saw him for a year and because she couldn't find anything visibly wrong and she told him he should consider see a psychologist and she couldn't help him any more and left us dumbfounded and not knowing where to turn. Two years later I still find myself trying to find answers and any kind of help possible and this article was a great help. It's extremely nice to know that we are not alone...which is the most debilitating problem loneliness and no one else understanding what each minute of each hour of each day is like living with this life changing injury. Just when I think I am in the acceptance stage I find myself returning to the anger stage against those people who caused this injury. Because of everyone here, our lives are somewhat easier.
Thank you so much. It's nice to know that the frustrations and guilt I feel are normal and ok to feel. My husband has TBI from a military related injury and now has seizures and early onset dementia. Lately I have felt more like a caregiver and less of a wife. And I don't know how to fix that. Right now I feel like a mother of 4 instead of just 3. Thanks for reminding me it's ok not to be superwoman and to feel lost and scared. I am only 32 and this is not what I expected my future to be.
I have been caring for my husband for 14 years. He now suffers with TBI from a car accident. It can be very stressful on both of us. A lot of friends and family don't realize just how bad it can get. They look at my husband and cannot see any physical impairments so they just assume he must be fine. They don't realize that the mental impairments are much worse. They aren't with him when he gets upset because he can't remember his kids growing up, or watching him get upset because he walks around the house several times because he can't remember what he got up for. They don't see him get irritated when they are talking about things that happened when they were growing up and no matter how many times they ask him, he can't remember any of it. They aren't with him when he gets upset over little things that used to not bother him at all. They aren't the ones trying to calm him because he worries about what is going to happen in the future and if this is just going to get worse. I know they don't mean anything by it but I hope that friends and family of someone with TBI take the time to educate themselves a little and realize that this doesn't go away after the accident. This is a lifelong illness and it takes a lifelong commitment to deal with it.
My husband had a hemorrhagic stroke 3 years ago and while most days I do ok, today I really, really missed the husband who did more with his day than read the paper and play computer solitaire. The husband who would spend his whole day outside taking care of the yard and doing DIY projects; not the one who doesn't notice there are leaves to be raked unless it's on his to-do list for 3 days in a row. People are nice and they politely listen but don't get it. Or they tell me how well he's doing and how lucky I am. Reading the article and all of your comments unleashed a flood of tears, but helped me feel less alone in this journey. Just so tired of being the driver of everything. Thanks for being here and sharing.
My husband suffered a fall down a staircase and hit a concrete wall at the bottom. He lost conciousness for over an hour. He had what is considered a “moderate to severe” TBI with a subdural hematoma. He originally refused any help from doctors (left the hospital AMA) but after two weeks of being home, he sunk into a deep depression and couldn’t get out of bed to go to work. He went to the ER at our local hospital and they prescribed him Lexapro (an SSRI anti-depressant). That seemed to help but it caused increased anxiety and sleeplessness. So he went back and they prescribed him Ambien and propranalol. After a month, the Ambien stopped working and it just made him do weird things at night but he couldn’t sleep. He was miserable and exhausted and still trying to work 50+ hours per week. He started abusing alcohol to help him sleep and because he felt like he was going crazy all the time. The alcohol numbed it I guess. After 7 months, it got so bad, I had to call the police to our house because he was scaring me and the children. I locked my bedroom door but he would just break it open and torment us. I went to his boss and told him what was going on and they put him on a leave of absence. He was required by work to see a neurologist and psychologist. The neurologist wanted him to switch from Lexapro to Lamictal and to quit taking the Ambien altogether. The Lamictal gave him a terrible rash and headaches so he couldn’t take it. It was too hard for him to get off the Lexapro. He did quit taking the Ambien though. We put him on a schedule and very slowly weaned him off the Lexapro over 3 months. About a week after he stopped taking everything, he had a severe depression/anger episode. It was so bad that I almost left him. He did improve for about two weeks and now he seems to have regressed again. The doctors originally let him go back to work 10 hours/week, then 20 hours/week and now 30 hours/week. I do not think he can realistically handle more but he absolutely insists he wants to go back to work full time. Even at 30 hours/week, he usually misses at least 1-2 days of work per week due to extreme fatique and anxiety. All he can handle at work is sitting at his desk and doing the bare minimum of effort. When he is home, he doesn’t get out of bed and he just snaps at me and the kids for everything. My children are small so I feel so overwhelmed just with what I have to do for them; now I have to do everything my husband used to help with because he can’t do anything for himself. He is grumpy all the time and makes messes and makes the kids cry and some days I’m not sure how I’m going to make it one more day like this. The psychologist says if it was up to him, my husband should take a medical retirement and be on disability, but my husband refuses anything other than going back to work full-time. It just isn’t realistic and I’m worried he will lose his job and we will lose everything.
Hi Everyone, I am new here,however I have been working with TBI for the past 12 years just never so close to home. On September 22nd 2014 my fiance, aka the first boy who ever kissed me was in a motorcycle accident he arrived in a coma and we were told he was not going to live. The Surgeon saw him move the left side of his body and said if this was my son I would do surgery STAT off he went. After 5 of I swear the longest hours of my life he was out of surgery with a post CT scan that did not show any bleeding now the waiting begins. They removed the right side of his skull in order to allow his brain to swell while inserting a drain to control the pressure I found myself watching the ICU monitors more than I was watching the love of my life due to the fact he could not tell me what was going on. After 5 days of heavy sedation a CT scan was performed and his sedation was stopped the Drs indicated they would need to see purposeful movement within 72 hrs well as he began to respond by what we thought was purposeful squeezing of the hand was nothing more than posturing (which we had no idea what posturing was) a kick in the stomach was the best way to describe it. No purposeful movement indicated to the Drs that we should think about what he would want because he will never live off the vent,open his eyes or make any sort of meaningful recovery. We are a week in and hearing that there is no hope I refuse to accept we are going to keep moving forward 7 days was far to early in my mind to make any sort of determination the way I saw and and still do see it is the only thing in this lifetime that is permanent is death and I was not hearing of it this early in the game. We are starting week six of recovery tomorrow we have purposeful movement, tracking, eye contact and following of command at times. Despite all of the emotions good bad and indifferent we cannot go back and I have already fallen in love with what is sure to be a new "US" .
im at the end of my rope ...and so i decided to google it...and im glad i did...ive been doing it all for 2 yrs....im alone with my husband ..have no children and spend my days ....tryin to reach him....but i cant....and ppl r rude...selfish and demanding...ive lost so called friends...becus i cant talk...im in the middle of something or i simply dont want to...ive trashed my body mind and soul...tryin to do it all...and in the end he dont realize he is broken...so i pray and wonder why me...whom can i turn to...today i thought maybe there is a support group for me...because im losing this fight..and if i drop dead who will care for him the way i can....just another wife drowning in this pool of housework and broken dreams....:(
Well done Abby. You speak for so many of us who endure the trauma as a TBI caregiver. The loneliness, and lack of empathy are difficult to tolerate, but I try to remember that what ever we are experiencing, it is much worse for our loved one for whom we are caring. We learn to enjoy the little things, ignore distractions and negativity, and try to remain open to new possibilities. We never know who may bring some sunshine on a dark day unless we open the shades. After a new friend shared the "Welcome to Holland" poem with me, I began to see things in a new light. No te rajas.
Written so wonderfully. Thank you for sharing. I wish I would have reached out for a support group months ago. This is not something to go through alone and now I get that. I can't do everything for my husband (tbi from snowmobile accident) and our 3 kids. I needed to learn to ask for help. I do wonder how I remember to get dressed in the morning and make it to work on time.
Thank you for your sharing. After 3 years, I really understand how important it is for me, as caregiver, to take care of myself.
Thank you. I have been looking for the right words to describe my feelings. You hit the nail on the head.
I'm so tired, I only wish it could be over. I'm 46 and I have taken care of my wife and children for 13 years. My wife became a quadraplegic thru a car accident. Just tired of meeting everyone expectations , including mine. Don't want to hurt no one, though I feel like I care the least fore is me. Wonder if a little selfishness is good.
Brain surgery for aneurysm in our case, going on six years now. 98% the man I've always known, 2% a complete stranger, sometimes a scary one. Constant irritability, lashes out to me verbally, is great with everyone else. Like living with a 16 year old boy, irrational, can't see the big picture, most recent issue is arguing with him over making medical decisions for himself-- he doesn't have good judgment, but legally is fully autonomous... Depressing, looking ahead, no hope in sight, can't leave the marriage (who would take care of him?). Feeling desperate and like life is just passing me by. His health issues take all my time and energy, used to enjoy art and socializing with friends, that;s all gone now. Depressed. Why isn't there an online support group somewhere for us??? Thanks for telling it like it is.
My son fell 13 feet on his head over 3 years ago. I was told to pull the plug. He had finished 4 years of college and turned 23 in the ICU. I could not do it. I fought with doctors for 12 months while he slowly regained consciousness. They kept trying to stick him in a nursing home. I wish I could take care of my son. I had to quit work just to fight with others to give him the proper care he needs as it is more than I can provide. He can talk, read, write, use a computer, feed himself and do a host of other things, but he is still confined to a wheelchair and is using diapers. Most basic body care is more than he can master. I need support to help me get him to the next level but it is very hard to find. The best thing anyone told me was to find out who was inside my son's body and to help him communicate with the world. I am so glad I did not give up and that I saw the intelligence in those bright blue eyes when he could not speak or even whisper. He is different but a more loving guy I couldn't find. Thanks for all your words.

"Although many of us rarely get a moment to ourselves, we often feel as though we’re living a life sentence of solitary confinement. We wish people could see beyond the brave exterior. We wish we could better articulate our own needs. We wish everyone in our support system were capable of understanding the tough choices we’ve been forced to make. But at the end of day, we’re simply too tired to explain ourselves."

I am a 16 year care giver survivor and when I read your paragraph above it totally broke my heart.....its the story of my life!  We had only been married for 8 years and had a daughter that was 3 and one that was 10 weeks old when my husband was diagnosed with a thematic mass which in layman's terms is a very slow growing inoperable brain tumor that eventually stopped the flow of fluid from his brain which caused adult onset hydrocephalus which lead to 10 surgeries from complications with a shunt that had to be installed to relieve the pressure of fluid.  We have lived through the effects of a TBI everyday and it has been a grueling experience that I will probably never be able to totally verbalize. It is the most isolating experience ever, yet your always under a microscope, constantly being judged by everyone for every choice you make.  I have earned the T-shirt that says "don't judge until you have walked a mile in my shoes".  I have had to make the most difficult choices over the past 16 years and I am sure they were not always the right choices but I did the best with what I had to at that moment.  

I literally sacrificed my own life trying to make our "family life" as "normal" as possible for my daughters. I never wanted to let my daughters see beyond the "brave exterior" while all along a small piece of me keeps dying inside. Even though our daughters lived under the same roof they have very different feelings about choices I have had to make and continue to have to make and I can just pray that someday they will understand.

If your just starting this journey surround yourself with a support network that truly understands TBI  because if not it will become the most lonely, isolating, "life sentence of solitary confinement" that you can ever imagine. You will suffer in silence every day. Friends and family will eventually flee because it is a way to complicated and overwhelming situation to deal with long term.  16 years later I have never been more alone or so afraid.  At 45 I am crushed, hopeless and defeated and I know as his mental health continues to decline, the hardest choices still lie ahead and my strength is gone.

God Bless!

My husband had a bicycling accident this past April (almost 5 months ago). He sustained TBI moderate to severe. He is relatively young (53) and an athlete which helped in his healing. But life is not the same. He is different and although for the first two months I was strong and present, today I feel very unkind and angry. I get angry with him and know that I am angry with the injury itself and the changes it has brought to our family. I feel I am not helping the whole process of healing. Sometimes I want to leave the marriage but know that isn't an option. I mostly feel alone even if I have a big family and lots of support. I have trouble finding the love I had before.
Yoi have identified everything we have seen in our daughter's life when her husband suffered a brain injury 6 years ago. It has affected both extended families and it is here to stay. We all need friendly reminders of what they go through on a daily basis and that we are not alone! Thanks! Mary T. , Louisville, KY

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