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Letter to My Wife's Family

Comments [69]

An Anonymous Caregiver, BrainLine

Letter to My Wife's Family

A long-time caregiver writes an honest plea for help and support.

Dear family of my injured wife,

One of the classic problems for people with a serious brain injury and the people who take care of them is a shrinking support system. Once the immediate crisis is over, family and friends slowly disappear. I’ve found countless examples of this in my research, and it’s been a problem for your sister, J, and me, her husband. Recently, I was asked to write an article about this issue, suggesting ways to get extended family members more involved in the care of the survivor. As I wrote this article, I realized I had yet to follow my own recommendations, which are (1) to clearly explain, with details, why you need help, and (2) to specify what types of help you need.

There are many reasons why extended family members don’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with the survivor — her impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives.

When the person with the brain injury is high-functioning, like J, the extended family may see no need for help. She’s out of medical treatment. She walks, talks, and looks “normal.” She may even drive a car. Therefore, her recovery must be complete. So, why do you need help caring for her? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering her. Let her stand on her own two feet. She doesn’t need help. She’s just lazy and irresponsible.”

In my article, I wrote that before giving up on the family, caregivers should try to educate their relatives about brain injury, in general, and about their loved one’s specific impairments. For many observers, a brain injury truly is invisible. They fail to see the full spectrum of physical, cognitive, emotional, behavioral, social, and/or communication symptoms that people with TBI and their caregivers deal with every day. It’s likely that only the principal caregiver recognizes that their loved one works diligently to appear “normal” to others. Only the caregiver sees her at her worst, at her most vulnerable. Consequently, those who don’t interact with the survivor often may honestly see no need for help.

The extended family may also not understand how much time and energy caregivers spend helping people who live with a brain injury. They may not see how much people with TBI depend on their caregivers. They may not see the sacrifices caregivers make to help their loved ones enjoy better lives.

To caregivers, I wrote, “This is no time to be proud. It’s a time for a frank discussion of how your lack of help is harming both you and your loved one. You also may suggest that if your health fails, the full caregiving burden will fall on the extended family.”

So, I will not be proud. Below, I’ll try to explain why we need help, why I cannot care for J by myself, and how you can help.

Research shows that being the primary caregiver for someone who lives with a serious brain injury is debilitating to that person’s health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. To remain healthy, every caregiver needs some respite from his caregiving responsibilities. A tired caregiver is a poor caregiver.

We can no longer ask for help from those friends who gave us a week of their time to help with J’s rehabilitation. Since our moves from Boston and then from D.C., we’ve lost touch with them. Local friends help with small things, at times, but we really don’t know anyone well enough in our new community to ask for help with the big things. Frankly, I just haven’t had the energy to make new friends. One of my sisters comes once or twice a year and I can always count on my older sister, too. And I’ve tried to be able count on you. I’m particularly concerned about what would happen to J if I should die first.

My health has been steadily declining over the past twenty years and the demands of caring for J have contributed to this decline. I’m tired. I’m so used to minimizing my chronic pain to others that I rarely admit the truth, even to myself. I’m exhausted. I’ve dramatically cut back on my work. I turn down most requests for articles or blog contributions, and I turn down all invitations to speak at conferences. I don’t have the energy to write another book. I wake up exhausted. I go to sleep exhausted. I regularly drag myself to the pool and the gym. I’m able to gradually increase how long I can swim and how much weight I can lift, but the exercises have not given me any more energy. I’m often even too tired to read, my primary diversion.

J recognizes my pain and exhaustion, but the part of her brain that translates this knowledge into action is gone. She rarely offers to help me, and when I ask she usually complains that she has so many of her own things to do. I’ve mostly stopped asking. When I hurt, she hurts more. When I’m tired, she is more tired. Sometimes we talk about this. Sometimes, when I’m particularly upset, we fight about it. But, it’s not going to change.

I’m easily upset these days. I lose patience with J, even over the little things: trying to get her out of the house on time, her obsessive-compulsive behavior, her interrupting or not listening when I speak, her forgetfulness, and the fact that she is easily distracted.

I’m not only exhausted physically, emotionally, and intellectually, but I’ve also developed compassion fatigue, which Wikipedia defines as a condition characterized by a gradual lessening of compassion over time. It’s common among trauma victims and individuals who work directly with trauma victims. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, and a pervasive negative attitude.

That’s me. You can imagine that when I feel this way, I’m not a great caregiver. And this is how I feel these days. It’s been a long time since I’ve had a break and I badly need one now. I also need regular breaks in the future.

Our life is only going to become more difficult as we age. J is a prime candidate for dementia and/or Alzheimer’s. She’s been having balance difficulties lately and has fallen a few times. With her osteoporosis, our future certainly will include some bone fractures. There’s mounting evidence that brain injuries are accompanied by a variety of other medical problems and should be treated as a chronic condition with new symptoms appearing as survivors age.

J has become a different person because of her brain injury. She’s not the woman I fell in love with. You’ve all spent some time with her and have seen many of her impairments. But you’ve never seen the full extent of J’s disability. You’ve never seen her explode with anger. You’ve never been deprived because of her selfishness. J and I have lost the equal partnership of a marriage. There’s now an element of father-daughter in our relationship. In some ways, J is like a ten-year-old, so caught up in her own life she’s oblivious to what’s happening to those who care for her. But, unlike the 10-year-old who will grow up and learn to see her parents in a different light, in this respect, J will remain ten years old.

I still love J very much. This message is not an ultimatum. I will willingly take care of J for the rest of my life. If I don’t get more help, I’ll somehow manage. But I don’t understand your reluctance to help. I don’t know if it’s the family culture, a lack of compassion, or such a focus on your own lives that you’re unable to see our difficulties.

Over the years, when asked by you for help, we’ve always responded favorably, with our time, our money, and/or a temporary place to live. At times, when we’ve seen a need, we offered assistance without being asked. For the past few years, I’ve hoped that at least one of you would call and offer to visit for a week, or to invite J to do something with you so I could get a break.

J is also surprised and saddened by your lack of involvement in her life and her care. At times, she fears that you no longer like or love her because of her brain injury. When we need help, her first reaction is to call one of my sisters. J has become reluctant to ask for your help because she now expects to hear reasons why you can’t or won’t help.

From a distance, our life probably doesn’t seem that difficult to you. We don’t have to earn a paycheck. We have all this free time. We have money in the bank. What’s the problem? Well, there’s a reason we can’t work. Believe me, there are few things as frustrating as having time, but not the energy nor the freedom from pain to use that time in an enjoyable or productive way. For years now, I’ve been using much of my limited energy to care for J and write about brain injury. The energy to write has disappeared. I’d like there to be more to my life than just caring for J.

How can you help? I need a respite break of at least seven nights every nine months. If all five of you participate, this means giving us a week of your time just once every 45 months.

Please help me set up a schedule now so everyone knows well in advance when their time to help will come. I need you, and J needs you.

Thanks for giving this serious consideration.

Your favorite brother-in-law, G.

Written exclusively for BrainLine by Garry Prowe, author of Successfully Surviving a Brain Injury: A Family Guidebook.

Comments [69]

Wow, you nailed it. I just need to figure out how I can share this with our kids.

May 6th, 2016 12:48am

Oh my ...this is my life. I would never be able to put this to paper. My two biggest supporters have both passed away and I have an overwhelming dread of what will happen to us in our old age. Its interesting that a lot of other commenters mention the selfishness of the injured person though they are high functioning, and the angry outbursts. Its been 12 yrs andm I'm just worn out .

May 5th, 2016 1:00pm

Got to keep Trying an Looking up an do best we can

Feb 8th, 2016 5:01pm

Thanks for putting our story into words. We are 11yrs post TBI and I still long for a phone call from one of my in/laws....."how are you holding up, Amy?" or...."do you mind if we take Joe on a mini road trip so you can have time to yourself?" or..."how has the aftermath of the TBI affected our sweet grandchildren??" but nope....zero/ zilch and it's really starting to take a toll on my physical and mental health.

Jun 19th, 2015 11:32am

I can feel your pain.  I have suffered a TBI myself ..... and went from a highly productive individual with a wife and a son, to being on my own.  I can get by, but suffer that mental fatigue from trying to keep up my home, my eating and on and on.  My TBI occured in May, 2002, and I luckily have a couple of personal disability insurance policies (long story, but it cost over $16,000 of attorney fees to actually get one insurance company to follow through on the terms of the policy..), plus SSDI.  But I will turned 66 years old in 2016, and my income will be cut in half as those private disability policies will end, and I will only get my SS.  I don't know what to do when that happens .... a sibling may take me in, but I am losing sleep over the idea of not being able to be independent, and also not wanting to be a burden to any of my siblings as well.  I did all the "right things" in being prepared for retirement, but I did not plan on how to save for a secure retirement when a TBI hit me when I was in my prime earning years, starting at age 51 yo.  It wasn't supposed to be this way, and I did not plan on my ex-wife leaving me, and also making it so that in addition to losing my career, my ability to make an ok living, and soon, having to sell my home, but also losing much time, very sadly, with my son.  Time that I will never be able to get back.  Yes, I feel that my father role was stolen as well.  And here I am with no visible hope of being able to do anything that  I had hoped.  Now, my biggest fear is being alone, being impoverished when my tiny IRA  runs out, ..... and with the prospect that living a long life is not what I want with the prospect of being alone and poor as well.  My otherwise great health is something I am grateful for ...... I just hope that my years on this earth are somehow quickly done when my minimal IRA is depleted.

Apr 9th, 2015 4:22am

You wrote MY story....... wow.  I cried when I read this and I don't cry anymore. As a caregiver to a TBI patient who looks Normal, I understand 100% what you are living with.  We become beasts of burden, exhausted and disconnected.  Those who were there at first fade away over time.

Feb 17th, 2015 2:44pm

I wasn't even looking for this and stumbled across it. I work at one of the best brain injury hospitals in the world, Craig hospital in colorado. I understand where you are coming from...

Jan 25th, 2015 4:33pm

Thank you for sharing.  Your words feel like my own, and ironically were a year ago when at my counselors encouragement i sent a plea out to my husbands 9 siblings for help.  My husband is 9 years out from a partially resected frontal brain tumor.  He has lost his job and like so many here have said "appears normal" but nothing is the same really.  He is a mental teenager at his best.  The lies, mood swings, unreliablity etc have irreparably damaged our marriage.  The only upside is that i feel i owe these people NOTHING; when he passes one day there will be only a small private service for the kids and i-the ones who have been there every painful step of the way.

Jan 12th, 2015 1:39pm

I'm sorry your experiencing what your going thru. As a person with TBI, Pit Tumor, PTSD, ADD, BiPolar and probably stuff that has yet to reveal itself. I can't help but notice the consistent reference as "caregiver". I do not know you exact situation but this I do know from my own life experience with my family and my wife. I am not trying to find fault in your ordeal. But please take notice as to the last two words in that paragraph. "My Wife", I did not say "my nurse" or "my caretaker". I said my wife because that means there is love, emotions and feelings of being a couple, lovers and friends. The later or "nurse & caretaker" there may still be love and compassion but not on the same level as a wife. For me that has created a wedge, a separation and almost like an inherited unwritten divorce between us. The extended family sees this also. This hurts the family and the person I am. I'm sorry to say this so frankly but it's the truth from the other side. If you consider yourself as a care taker I am assuming that your wife is bed ridden, can't hold a job, unable to do for herself 24/7 365 days a year. Therefore you must take care of her entirely. But I hope this isn't the case and you can read the next part. It will help if you take it to heart and understand it. If she is not bed ridden and exists in life as someone who can contribute to society and to a marriage and at times has periods that she can't do those things. You must be able to shift gears from Loving Husband to Caretaker and back. Fluidly and without faulting your wife. I know in my case this hasn't happened. I hit a rough patch 2 years ago and she shifted into caretaker mode and never came back. I'm sure she feels she has - I love her with all I have - I am at fault for putting the burden on her but her in ability to shift back to being my wife, lover and princess has caused her to be super criticlel of me, and never allowing me to be her husband again. This has created serious arguments and fights. Tearing us apart and splitting the families. I love her - don't think I could ever leave her - I don't want to leave her - I can't imagine my life without her. But for you I will say this. Be careful and re- think things : you are running the risk of losing her. For me, I would rather be with my caretaker and live and die in my miserable depressive life than imagine it without her. She may not be able to show me the love I need but I do love her. At times I feel selfish, I have considered leaving - if pushed to the edge I may. But not for me, for her. So she can find happiness and possibly live the rest of her life without the headache of having to take care of me. If I'm off base on your situation. I am sorry. But if it helps you I am happy. Someone can benefit from the eyes from the other side.

Jan 6th, 2015 2:26pm

I am reading your article and my wife has TBI. It's so EASY to care for her, simple... I just endure the yelling at me, accusations that I cheat and ... I AM kidding. It's a nightmare. I have a painful rare disease, too. So I became despondent. Last year. She repeats mean statements like "you were suicidal!" BLAH blah blah. Over & over & over. One has to be an effing tough son of a Beyoncé... Because you die inside over & over. Just yesterday I finally remembered & blogged about the earlier times. When there was peace. She picked that day to read it and yelled at me all last night. I have been suicidal because there ARE others who can step in and she has tried to hit me. Obviously I am not the most mature but I am commited to her and not thru a marriage paper. All I have been doing is enduring. She was terribly pushy before the accident. I exhort people to be their best because if you lose your brain, you will be stuck. So you do not have the will after a TBI (in cases) to apologize, do dishes, avoid throwing away bills, debit cards... You rely on another to save you, over and over. You may claim to be pretty, continue to gossip and you should PRAY your hubby/ servant knows when you need to go to ER, can tell if your 30-day pads are working, know when to not say a word when you scream at him. Today I am bitter. A year from now, no way. So this is an embittered man who has done this (while chronicly sick) for 10 years and I am SO trapped. I am 40. She is forty something. Thank you for the article James T. Templeton

Jan 4th, 2015 4:57pm

Thank you for your honesty.  Husband, Wife, Mother, Father, Child, Sibling and survivor should read this!  

Dec 5th, 2014 12:49pm

How helpful to read this post and many of the comments. We are very early in. Almost 6 months. My husband had a "very severe" TBI, but has made a "good recovery". He presents well, is high functioning. Is trying to put it all behind him. If he has any insight, he's in denial. Very few, including, him and especially his own mother and siblings, see me as a caregiver. He no longer needs constant supervision, and is going to work, but he is not the same. Self centered, moody, irritable, little things make him angrier than I've ever seen. Subtly hyperverbal at times. Slower to complete tasks, hard to transition to the next activity, slower reaction time and awareness of traffic. Constant feedback from brief encounters validate his self perception that he's back to normal. A visit to a support group validated to him (by experiencing others with more obvious impairments) that he is "fine". All exhausting to me, and very few outside can (or choose) to see.

Aug 1st, 2014 6:47am

I am currently going through a divorce after 7 years after my husbands accident. I don't have the time to go into everything but at the time of his accident, I had a 5 year old and a 1.5 year old. Lived in a different state with no other support system. It has affected me and I am not able to function as I use too. I've had to quit several jobs because I can't handle the stress. My husband is getting back on his feet and is not there for me. He is using my now pstd condition against to try and get custody of our kids. His family only judge me and does not understand the reason I have had to do the things I have over the years. Had I of not done them, I don't think he would be as well as he is today. He tells me to quit living in the past but the past has effected me. I am trying to move own and adjust. He has never thanked me for all I have done. Actually I don't need a thank you. Just understanding!

Jul 25th, 2014 7:43am

I am just so tired. I'm tired of feeling stressed out. My feet hurt from walking on eggshells and my stomach is tired from being tied up in knots. My husband sustained his brain injury in a car accident almost 15 year ago. Our daughter was 1 1/2 years old. Many years I have suffered through his anger. I have tried everything (read books about tbi, joined a support group, was very patient, was the best caregiver I could ever possibly be) but this many years later I am still hurting and I am still stressed out. I am sad because I wanted to have another child but I couldn't bring another child into the world with a father who was so angry. If he was like this when I first met him I would have never given him the time of day. My heart breaks that my child is an only child. My heart breaks that I cannot share my life with the person I fell in love with. He "died" the day of the accident and what emerged was somebody else. It's the anger and that crazy look in his eyes that moves me closer to just leaving him, something I never thought I would ever do. He is high-functioning (can drive, works, etc.). I once read a book about a family's experience with tbi (Where is the Mango Princess). The author was fantastic. She was very educated, patient, took care of her tbi husband and they really seemed like if there was a couple who would make it through a tbi injury it would be them. Sadly, 5 years after the accident that caused the husband to have a tbi they got divorced. Is this where I am headed? It makes me cry. This is not how I saw my life going. I hate tbi. No good came out of it. Why did this have to happen? Tbi came and destroyed our lives and for no good purpose or reason.  

Jul 23rd, 2014 6:57am

Hi George, I'm sorry to here your going through a divorce. I too suffer from frontal temporal lobe dementia from all the years bagging my head with that dreadful football helmet. When I was first diagnosed my friends and family reached out with open arms. Now after a couple of years I'm left alone to deal with my issues. I turned to drugs and alcohol to self medicate my loneliness, anger outbursts and pain. Needless to say that made things worse. I live in a sober house now and though I am drug free I still have my issues to deal with on my own. I get tired easily and it's hard to reach out. I find it very difficult to explain my condition to people that are not close to me. They just don't understand or don't want to help or comprehend what I am telling them. I'm left to deal with my TBI all alone. I'm afraid as it gets worse, which is inevitable, I will be in some assisted living home run by the state all alone. This is my true hell and I'm scared everyday. Scott R

Jul 4th, 2014 12:12pm

In 1981, at age 22, I survived the first of 9 VP shunt brain surgeries, a result of a serious brain injury I sustained during the 81 Super Bowl season. Since that original injury and subsequent first brain surgery a few months later, I've battled through major short term memory issues, poor judgment, anger management issues and multiple gran mal seizures nearly my entire adult life. This journey has given me a different perspective than most regarding impacts to caregivers. Especially considering the fact that by the grace of God I still function fairly well.

What I have seen for decades, is what I call "The Ripple Effect".  One of the first slides in my power point presentation is a quote from me in 1984, "A traumatic brain injury is like throwing a rock in a pond. The ripple effect as to the number of people impacted is huge."

Those of us traumatic brain injury survivors either accept and deal with our injuries or are too depilated to even recognize we have a problem. I suffer from both. Unfortunately for my loved ones around me, they have no support. 

I'd rant and vent, and feel better getting it off my chest, while wife carried my burden I'd just dumped on her.

If I'm running errands or doing work and my wife reminds me not to forget something, its like walking into a mine field as she says.  I may take her reminder calmly if I'd forgotten (which I usually had done), or if I had remembered I might explode on her to quite nagging me.  

It's a no win situation for the caregiver or loved one.

The worse part is many of us look and sound normal. As the article states, after the first few weeks or months, support slowly erodes away. 

But the pressure continues to build for the caregivers.

I don't know anyone who enjoys asking for help, so please take this to heart. If you know of someone who is dealing with a traumatic brain injury survivor, and I have a very close friend caring for his totally incapacitated brain damaged daughter, please don't make them ask for help.  A simple phone call to check in, drop off a dinner on occasion, or better yet, spotting them a couple of hours to go to the gym, or a day or two so they can recharge their batteries will do wonders.

I have always said, my brain injury is much worse on my family than on me.

Just ask my wife of nearly 19 years and mother of my children.  We're going through a divorce as we speak, as the pressure has been too much for her.



Jun 27th, 2014 1:54pm

Thank you for this. It scares me, but thank you. I have only been caring for my husband  in this way since December, 2013. That is when he was operated on for a brain aneurysm. But, it was deeper and larger than they thought.  And now he has another in the same place. He has not recovered from the operation. He is not the same. He is here. I know he is doing so much better than other folks. He is just not going to be the same. I am the one at the helm now. We are in our middle 60's and things are not going to get easier. But in my trying to keep things calm and on schedule I am wearing down. Yet, he does not want anyone to help out. We got this he tells our children. We don't got this I tell him. This honesty scares me because I know I am more tired than I have ever been. And more stressed. 

Jun 27th, 2014 10:46am

Shortly after my husband's auto accident and subsequent TBI, I read this letter.  It was 2013.  Here it is again, and it touched me deeply then and again, of course now.  He explains our caregiving/spousal situation so beautifully.  Thank you for reminding me, as today, I too, at 6:10 a.m. wake up another day feeling exhausted.

Thank you Gary and I wish you Miracles,

Deborah Brooks, deborah@thepainterofbeauty.com

Jun 27th, 2014 9:11am

This is soo true. I know exactly where this guy is coming from. Asking for help for yaself to have a break is a hard thing to do but as carers if we want to continue we need regular breaks. Caring for someone with a TBI is one of the hardest jobs in the world. The unpredictable behavior. The lack of thought and sensitivity of your family member slowly kills u inside. All over the world we need more respite homes for TBI patients. My son is 23 and if I need respite the only place he can go is a rest home with the oldies. Not a safe thing if he wakes up volatile or in a bad mood. I agree that we all need to help not just the main spouse or parent. Take care life is short.

Jun 26th, 2014 5:13pm

I am my husband'caregiver his TBI happened 5 years ago, he was kicked in the head by a horse, since then he is had 11 brain surgeries, a hip replacemt, he was in a coma for almost 5 months (a year after his tbi) he's had multiple brain infections. His last surgery was in May 2014. They removed his boneflap (right side of skull) and cleaned the infection he had, I stopped working 5 years ago to take care of him (24/7) he is not able to walk or function on his own he needs a lot of care, i dont get any breaks!! But sometimes is better this way, i have experienced criticism, judging, negetavity etc. From extended family so i rather deal by myself than with the help of negative people.

Jun 26th, 2014 4:19pm

I feel for all of you, I would like to help out with respite care. If you need a break for a week a month or more please let me know. Now that I am not working anymore I would like to pay forward. I will be glad to do respite care for you for free. I live in New Mexico, if anyone needs help in New Mexico, let me know. If you live out of state let me know I will try my best to help you.

Jun 26th, 2014 3:05pm

I understand, however most of the time one does not want to address the sexual aspect of a TBI. That is what alienates me from my husband, it is very difficult to switch roles from caregiver to lover. Even if basically he now works albeit not the same type of work. God help if he is home alone too long, the thoughts he gets and wants to spend money. This is what keeps me from being romantic with my husband. Then the sexual part is difficult at best, robotic not like it was before! It makes me cry, because no one knows or understands why I do not feel like I have my superman, protector husband. I have my lover, my best friend and I love him but I do so miss the man I once had. In some ways it is better because he quit smoking and I love that! Mine wants to spend 800$ for a penny for his coin collection, or 975$ for cymbals for a drum set he does not play! And yes, my family still wants me to cut their hair and take care of my ailing father too! It makes me sad to see my extended family so selfish.

Jun 26th, 2014 1:45pm

I have lived this experience personally as a care giver. I have found two alternative therapies which have both been life changing, for me as the caregiver and for my loved one with TBI. These are both serious, science backed, therapies that can be rsearched on pubmed.gov. They have provided miraculous results for our entire family. I am not a doctor however. Anyone who wants more information can contact me directly at kbirk123@yahoo.com and i will be happy to share it. There is hope.

Jun 26th, 2014 12:56pm

Thank you for putting it in words I couldn't, I left after 3 years, a mini stroke and then got two pulmonary embolisms from not taking care of myself, everything you said is entirely true and exactly the behaviour that was going to kill me. Psychology helps and medications help but there is nothing better than a solid support system. I'm now determined to get involved and push the boundaries because the amount of respite offered is nowhere near enough when you are living it 24/7. Not for you and not for the person you care for, the system and people's mind sets have to change, thank you again.

Jun 26th, 2014 9:53am

I am now reduced to tears after reading Gary's column.  Not as a caregiver but as the survivor with tbi.  My accident occured in 1993 when I was struck nearly head on during an ice storm on Interstate 80.  After experiencing a seizure and another head trauma I have now been on disability, short term through my employer for 3 years.  During that time I experienced many of the family reactions stated in the article.  but what hurt the most is when my wife of nearly 35 years called me lazy in front of one of my children.  Within a year I am now divorced and have lost contact with most of the friends in my life.  Suicidal thoughts plague me nearly everyday.  Soon my disability will end and since there is no blood test for the CTE which my Dr. feels is primary diagnosis SSI is denying my claim.  So too soon I will be living on what little savings I have and hoping SSI is approved before I run out of cash.

May 13th, 2014 6:02pm

Gary you spoke in love and from the heart!!

I left my job Jan 2014 to take care of my 19 yr old daughter who was in a vehicular accident Aug.2012 and suffered severe brain injury. I know only too well the commitment and dedication needed for the patient's care.

Thank you for sharing!!!



 My story is on my fb page.  " Denise De Silva Sealy"

Mar 29th, 2014 12:20pm

Thank you Garry for a wonderful letter. All that you say is true and it is heartbreaking. Few understand the personality changes and changes in cognitive ability and at times I have wondered if I were crazy and imagining these things. It is so sad to realize that the one you love is not the same and very possibly will never be that person again.

Mar 20th, 2014 6:59am

Wow, this is right on. If they don't have the everyday contact with a brain injury survivor they have no clue. We find this as our new normal in our family.

Mar 19th, 2014 8:07pm

Excellent letter..I am sure they still didn't get it though. I tried every approach..even with therapists noticing their lack of involvement. I had family members mad at me because while in a rehab hospital...1 month post injury..they were mad..visiting hrs were over at 8.. it was 11. And i kindly said Mark really needs his rest...I was a caregiver to a miracle survivor for 5 years..then i broke. I wrecked his world and live with guilt. We didnt have the finances...plus a workmans comp case. I wrote hundreds if letters...very sad..

Mar 19th, 2014 7:26am

I, too, relate to everything you wrote - the difference being that my husband has no siblings for me to prevail upon for help. He suffered a TBI last Memorial Day weekend and was only given 10% chance to survive. He's made an amazing recovery, really back to normal in almost every way. He has a lot of other health problems that existed before this ever happened as well. While he has recovered well, he is still not very strong (2 months in a hospital bed will do that), and I have to help him bathe, dress, etc much of the time. He used to cook most of the meals, but does not do that anymore due to severely deteriorating vision (glaucoma).  I work full time, believe it or not. We do hemodialysis at home because he is in kidney failure. My plate is overflowing and lately I cry a lot. I try not to let him see but sometimes I just can't control it. I'm frustrated because he doesn't deserve this; I don't deserve this - and there is no one I can ask to help us, no one that I would feel right about asking. Most of our friends have gone their merry way; they call once in a while but no one ever asks me if I need a break, if they can spend the day with him so I can get out. I suppose I should ask, but there is just part of me that won't do it. I'm not trying to be a martyr. I guess I just feel like I can't ask people to do what I consider to be my responsibility, even though I know if it continues like this something is going to break. I was going to attend a local caregiver conference, but by the time we figured out what my husband would do for the day while I was gone, the registration was full. I was really upset because I had hoped it might be a way for me to get the help I desperately need, even if it was just someone to talk to. I don't talk to anyone about this; at least, I don't tell anyone how bad it is, how lost I feel, how I have nowhere to turn and it can only get worse from here on out.  Sorry, I don't mean to be such a whiner. I just don't know what to do other than fight every day to keep from losing my mind.

Jan 22nd, 2014 3:38pm

WOW, You articulated how I feel so well, as a caregiver... I hope you were heard and things have changed in your family. I am so very tired, so very frustrated at the Insurance Processes and lack of friend and family support, so tired of educating people, telling me to go back to work... no-one seems to get it.... so tired... I wish you well dear caregiver, from one to another!

Jan 9th, 2014 10:02pm

I\'ve never read a more comprehensive account of the plight of a TBI/ABI carer. Even though I advocate for ABI people in a voluntary capacity, I was very moved by your complete understanding and the wonderful way you articulated your position. As a consequence, I have decided to write a handbook for carers & would dearly ask that you would allow me to include your letter in my final draft. I will not receive any monetary reward for my work but I\'m sure your letter will form a core of the work & will be duly referenced. Sincerely yours Kevin

Jun 21st, 2013 3:53pm

Hi Garry -- you and I have corresponded before, a few years back. This is Charlie in Hickory, NC. Pat Benfield connected us when you first started writing your book. I understand your pain and frustration. Angelia, my wife, suffered her injuries as a result of surgery. Our daughter was 6mnths old and my son was 10. Her family was worthless and in the end, destructive to her and my family. Families can be your greatest enemies. I ended up fighting them in court -- not for her care, but what they perceived as money available. There was only a small cd for her care -- I still work fulltime and raise the kids, and take care of her. I am now my wife's legal guardian and really more like a father. Without the help of my mom and a couple of close friends we would not have survived. And just as Jessica will always be 10, Angelia will always be 7-8 as well. It is what it is I guess. I wish you the best and I will be keeping you both in my prayers. Thanks, Charlie

Jun 5th, 2013 10:05am

Gary, Your letter speaks right to my heart. My husband received a TBI while in Iraq almost 9 years ago. He is very high functioning, but the anger outbursts and lack of memory can be very hard to deal with at times. He has trouble with daily living activities, such as medications and appointments, and so on. As his only caregiver, I feel your need for additional support from family members. I also wanted to let anyone that is a caregiver of a military vet know about the CareGiver program through the VA. They have a wonderful program that can help not only with support and advocacacy(sp?), but may be able to provide the caregiver with a small stipend to help ease the financial burdens that being a caregiver entails. We learned about this option about a year ago, and it has really helped. So, that being said, keep fighting the good fight, I hope you get the rest and help that you need. As a caregiver, my heart bleeds for you. We also deal with PTSD, and other physical issues that impair my husband's abilities to live a normal life. Take care of yourself to your best ability, and I pray for you and yours.

May 10th, 2013 8:40am

My husband was diagnosed with TBI three years after the fact so we missed any initial flood of support and help. For years we had struggle to accept that he was somehow different and this must all be his PTSD or his failure to adapt to being home again. His convoy overseas hit an IED and no one told me. He didn't tell me but, of course, he remembers very little. Life has been a roller-coaster for the past five years. We are currently living with family who have assured us that would help out and have yet to come through with that. Babysitting commitments are usually cancelled at the last minute. Hoards of guests for those family members visit for weekends or longer without them giving us any notice, without giving me time to prepare him or plan for us to be away. It's been overwhelming. Your article, honestly, made me cry because I feel exhausted and alone most of the time. Thank you for taking the time to write it out.

May 8th, 2013 10:56am

This was so helpful. While my family is very supportive, I'm the primary person responsible for my brother's care. He can live on his own, work for very short time periods and get around on the bus, but he can't drive, needs help with money management, shopping, medical care and dealing with forms and day to day things that you wouldn't expect because he seems pretty capable overall. I have to say that dealing with doctors is the hardest. They explain things and even when I'm with him at the appointment, he may not get what they are saying to him. For instance, at a recent visit to the hospital for a liver scan, they told him he had a lesion the size of quarter on his liver and they needed to do a biopsy to see what it was. He has been concerned ever since that he has swallowed a quarter and it is in his liver. I've explained and explained, but the doctor is the authority and he said this thing about a quarter so that's what my brother took away from the meeting. He feels stupid for swallowing a quarter and brings it up over and over no matter how many times I reassure him that this didn't happen and that the doctor was just telling him the size of the funny place on his liver. I wish that they could give medical professionals some guidelines for dealing with those with TBI. My sisters will get so annoyed by this kind of behavior. I have to keep reminding them that while he looks like he is fine and can read and cook and take care of himself is so many ways, he still has had major changes to the way his brain works and he does these things because of that.

Apr 15th, 2013 8:21pm

Gary, I too feel your pain my son suffered a brain injury 2 years ago, you take the words right out of my mouth. I don\\\'t understand what makes the people that are supposed to love you abandon you I wish I did so I could fix it in my situation, your in my prayers Gary and all of you that have responded as well. We are not alone I try so hard to find comfort there

Mar 23rd, 2013 8:32pm

It is sad to see their friends leave them. It is heartbreaking when their family desserts them. Bless you for being her hero and helping her through her journey and for saying so eloquently what I would love to say to our family. Yes our loved one has changed; yes it breaks your heart to see your loved one struggle; but they are still a person with feelings and YES I have cried many tears but if I leave or run from that too where would our loved one be? Shame on our families who "hide" from our loved ones. If they would only get involved it will teach them more about love than they ever, ever dreamed. Thank you so much for writing this lovely letter. I am going to show it to OUR family!!

Mar 14th, 2013 10:33am

Wow, I guess we are not alone after all, I cried when I read this because I can fully identify, its been 2 years and it becomes very lonely, I asked my husbands family just for a weekend and got the very same responses many people have mentioned...too busy, have a mortgage to pay, got kids, it was "too traumatic" for his mother to visit..for HER, his sister cried after the last visit...well welcome to our world...yet they still cannot step up nor can the insurer, I havent had even a 24 hour break since August 28th 2012 because they refused to fund care hours even though I provide over 100 hours a week care and work fulltime, they couldnt even give me 3 days to fly overseas for my grandads funeral, we are young 35-40 but it feels like 100...Thank you Garry for sharing.....

Jan 31st, 2013 5:15am

Hun,reading this was like you took the word right out of my heart! I am a TBI Survivor, and now that the body has healed, I am alone, having to deal with it all, alone. I have asked my own Mother for financial assistance, just a small amount for electric during the winter, (she has money, mind ya) and all she could say is that she can't as long as I choose to smoke. Before my accident, I was an alcoholic, and I never have had a drink again. I gave up (total withdrawl) all narcotics, and psycotropic meds, to get from the fog to the light, but all she could say was "not as long as you are smoking". Wow, support my butt. If I knew where to come and how to get there, I would gladly give ya a well needed break, and make a new Survivor friend! It is called support, and paying it forward! You are amazing! She is so blessed to have you!

Jan 31st, 2013 2:43am

I pray you receive the much needed help you've asked for. I can relate to your letter in so many ways. In 1996 I had an AVM hemorrage in my brain along with a brain anerysm, after several months of treatment I had a craniotomy. My husband has been my caregiver for all of these years and lately he has been so exhausted and I have been wondering about his fatigue. Perhaps he has the compassion fatigue you spoke of? I do my best to see that he gets some time to himself but obviously this is not enough. People see me walking and talking and have no real sense of my limitations. For so many years I hid them but no more. I am who I am and its okay. Laurie M. Gagne

Jan 30th, 2013 1:20pm

My son suffered a TBI from a car accident in 2002 at the time he was 15 and spent his 16th birthday in a coma. Now 11 years later family and non family seem to think that since everything looks normal on the outside everything should be normal on the inside. I would like to share my example of how I try to explain this to everyone - If I have a brand new computer and go inside to the CPU and cut just one wire and then put it all back together would you be willing to buy it for full price? Everyone says no and then begin to understand that just because the outside is in perfect working order the under the hood problems can be a real source of pain to the owner. Thank you so much for your article my wife and I both felt we could have just changed the names and it would have nearly mirrored our life.

Jan 26th, 2013 4:40pm


Jan 25th, 2013 8:22pm

My brother was in a vehicle accident 2 years ago. Recently my family traveled 2300 miles to visit. For the 5 days there my sister, his caregiver, was not available for us to see my brother. She would not bring him to the family reunion (because she was mad at my uncle) and generally found an excuse why they could not see us. We stayed on an extra night in an attempt to visit with him. Finally on the last night of our visit we learned that he was with his respite worker at a baseball game. Realizing this was our last opportunity to see him we quickly headed to the ball field. Knowing our intentions she also went to the ball game. We were not allowed to talk to him one on one during the game or after when we went for coffee. She answered questions posed to him. When I asked his social worker about her behaviour she said that my sister is making sure the information he was giving was correct or that she answers so he doesn't feel stupid. Yet my children noticed she was very impatient with him. One would think she would look forward to the opportunity to allow him to be with family members. But this doesn't seem to be the case. In the next couple of years will compassion fatigue set in after everyone gives up trying to be involved? Will she have regret for burning her bridges of support? I feel bad for my brother who will have to endure the fallout.

Sep 22nd, 2012 11:47am

Thanks Garry, for a very honest, transparent and dead-on article. I feel like I could have written this myself. My husband suffered a TBI on July 2, 2011 while riding an ATV with our four year old son. Thank great God above that our son was not seriously injured, but my husband spent the next 33 days in the trauma unit of our local hospital. Fortunately, it was a Level 1 Trauma Unit so he received the very best care. People were there day and night (I spent the first three nights there), and there was never a shortage of visitors, which was so comforting. I felt like I could leave the hospital to be with our three children (ages 11, 8, and 4) and be the stability they needed. He was supposed to be released to in-patient rehab, but instead, was released directly home because he was \"too high functioning.\" I knew this was a terrible decision immediately (most likely initiated by our insurance but that\'s another story for another time), having spent o much time with him in the hospital, he was like a different person. He reacted with rage to me, cursing me, calling me names, insisting I leave the hospital and accusing me of all sorts of behaviors. It became too much to bare, that I eventually began spending less and less time at the hospital. When he was discharged home, I was terrified. I did not know what I would do since he was so full of rage and anger, he could not be left alone (by himself OR with our children) and we did not qualify for in-home caregiving. I could not leave work, after being off during his hospitalization. He refused rehab, though I was able to get him through three weeks until they discharged him from that and said he could drive! Everyday since then has been an up and down roller coaster. Friends brought us meals for the first few weeks home, but help from his family has been non-existent. My family lives over 900 miles away and offer help when they can, but they are elderly and I cannot put that burden on them. They even offered for him to come and stay with them and give me a break during this difficult time. He declined that, because he is most comfortable with me. However, it has become similar to living with a bi-polar mental health person. His ups and downs are overwhelming and my children frequently walk on eggshells. He suffered from OCD and ADD prior to his accident, so these issues are magnified by his TBI. His family have practically shut their eyes to his injury and feel that he should be \"back to normal\" since he looks good and works. I have ceased trying to talk with them about it because I know they feel I am enabling him, he needs to \"man up\" and these are just excuses he uses to not have to do what he doesn\'t want to do. He has showed them articles about TBI and begged them to educate themselves, but as his mother put it, \"it\'s just too stressful to deal with\" and she is taking her own anti-depressant medications now. I understand, I live with it 24/7. I have learned many coping techniques, but I am still HUMAN and can only take so much. I also fear for what this is doing to my children, repercussions we will only see later on down the road. I am only 41 and he is 43. I should also mention that he was diagnosed with Merkel Cell Cancer in March, 2012 and had to undergo aggressive chemo and radiation treatments, which, unfortunately made his TBI take a backseat. Again, his family chose to minimize his condition and stick their heads in the sand. I am not patting myself on the back here, but I know that I am the only one who truly understands what TBI is, and that it has changed his life forever. I feel like I am leading a new life, on my own, making plans for occasions that I can\'t depend on him to be with me, because we never know what the next day will bring. In closing, I just want to say, THANK YOU for making me feel like I am not alone, that what I am doing is RIGHT in trying to help him heal in a safe environment, and to ask for help when I need it.

Sep 12th, 2012 8:15pm

thank you for expressing my sitution exactluy! Although in my husbands case it is major brain tumour craniotomy recovery, it sounds identical. Im finding his problems are most similar to tbi than alot of brain tumour stuff. You are correct that the original outpouring of support upon diagnois of tumor was amazing, and then slowly drifts off and then disappears. I am 51 and my husband is 54. He has lost a good part of himself, his personality is not the same in very suttle ways that only me and my diuaghter, 14 can see. His previous personality problems have been exacerbated by the surgery, he has lost his career probably at its peak, many of his hobbies, most of his physical abililties (hes in a wheelchair and catn use his right hand), we are running out of sick leave and hping we get the disabililty on time. I wake up and hit the ground running until 2 am to do it all, and to keep my duahgter from going crazy. though she loves him, it is so hard for her to watch this happen to hi, after she spent so much time helping him recover for 2 months in the hospital. Whats really wierd and mindboggling is how negative people (famiy, neighbors, some therapist even are towards me the caregiver. They make negative assumptions and either believe he isnt getting enough treatment 9 they even called scocial services becasue my daughter and I left him at home even though he had help watching him, this is a year after we havent had a ten minut break) or they believe we should just get on with our lives and get someone else to help him. Like you say people want it to just go away. And lets not even go there with the financial problems. HThey are all our fault! Im hoping I can get a break of some kind but now im not so sure becasu;e the neighbors believe I dont treat him right. I love my husband of 27 years and would jump in front of a train for him. Everything I do and evry choice I make is for the good of my family, its just disheartening and it depresses him too. He knows he has made life very difficult for us and feels bad about it. we are scared now because he has run out of therapy visits for insurance and cant start again until January. I really have to keep his routines and keep him dierected and from falling down emotionally since he doesnt have the additional support and stimulation of the pt thrapist (one who he really like) until January again when we can qualify again. The lack of support for the caregier is just astoudin me and my daughter ;now and she doesnt trust people anymore becasue the same poeple who initally jumped in and took their shits off their backs for us during the inital crisis are the ones who we now think hjave turned on us ( me and my daughter ). I try to tell her that peopple mean well, they see a wheelcahir and heaer about the Mickey rooney thing ( I think the same people who investigat thsese elder abuse tneglect things also investigate disable peple is my th eory ) Anyway, the lady came to the door and didnt right anything down and didnt seem too worried. My hsuband had to explain that w have nosbybodyes in our neighborhood who really dont kn ow anything abnout us. Its so sad. We have decide to make copies of the independence scaloe test that ot uses for him and reasses him periodically and make copies for all th e neighbors. I do undrestand that appearances are dieceiving. Ppoint is, Im really stuck, he dosesnt actually need that much physical care, bu needs constant emotional and communication car. He cant anwer questions with yes or no, canbt really answer questions at all,, cant remember any instrucitons you gave within the last 5 minutes, bu has amazing long term memory and high cognitive reserve. This is confusing to others who cannot see his sever problems that make life so hard just to be around each other and communicate , bt they could talk away with hi about Obama or somehting just fine. Well sorry to be so long. Just glad to know theries others out there. Im thinkling of going to caregiviers supporrt group, but I wonder if it just all these people with there issures of the pphysical care, or is it lots of ppeople with this probnlme o caregiver stigma for brai problems and lack of respec t for the caregiver and lack of regocnitn that we need toe at and sleep 8 hours and that there are other immediate family members afftected and that life is not returnig the same. They dont undersatn how horrible it feels to not be able to care for either agin parent now that the aging parent is my husband. I feel bad for them and have told my si blings this. we have not told anyone except one trusted brother that his glbiostoma is terminal probably, not even his mom. Its too muich for us and hilm, plus we are all terminal and I thin most people understand that most htings liek this can have complications, and if they are logical that cokplications can casue death, just like stroke or heart attack ( you cant imagine the crap we got form doctors when he was diagnosed with that \"terminal \" thing\" It was like thrwo hin on the operatin g table now no matter if it parlyzes him, and im a bad cardgive for not doing that. HTey literally kdinapped him and hled us hostage in the ho spital and moved him against my wishes even though we were lining up a second opioon at the time. Turns out the caregiver was right to go slow, and me the caergiver has been right all along. THe surgery caused major right side hemiparesis, and good I waited alitte (not as long as we wanted ) to put a few small things in place like the ability to dr ive to the hospital in an ice storm. They absolutely dont care about important caegivers issues such as this, even in a patient centered hospital. Itsl all a bout avoiding malpractice, just like in childbirth. Well enogh said. THank for being there. GOod luck, perhps try to find other who have a disbaled child. Ive found my best support to be a frined like this. TH eyve been thourgh worse than you becaseu it was their cjhild, and they were probably bnlamed at the birth, and were neve forgiven for drinking that wine, until they wnet on to proudce two toher fine and well adjsted children. It kind of puts things in perspective. Plus, ;they also have to figure out what to do with that child. After schooling, the care options are limitmed. My friend has decided to care for their retarded child at home until she cant anynore.

Aug 27th, 2012 3:35am

Gary I can tell your words are so sincere and that you need the help thatnyou can. My father in law had an accident nearly 10 years ago that nearly paralyzed but he is sentenced to a wheelchair with severe neuropthy. My brother in law and mother in law take care of him everyday. The house was remodified for the wheelchair. My husband and I cannot visit often, he is a truck driver on the road six days a week, I cannot drive cuz of my seizures, and they live35 miles away. Belive me tho, if I could I would go there at least 3 days a week if I could to help out. There is a lot of stress between the three of them right now, and it is not pretty. Very, very ugly. But, my complaint with my father in law, is that he gave up! He quit with his therapy. He quit with the exercises and such. And because they were tryung to remind him of doing them, he interpreted it as nagging and badgering. He spends his entire day on the computer facebooking and twittering. Its hard to get him off the computer when guests do come over. I have actually been considering taking my mother in law out for a bit. To the movies,dinner etc. Problem with her, she doesnt like to drive long distances. Its hard to help, when no one wants to help themselves. I am offering as much as I can, but I am limited as to what I can do too. I was rambling when wrote this, I hope this makes sense.

Jul 2nd, 2012 1:04pm


Jun 27th, 2012 5:36pm

Another wonderful addition to caregiver understanding. You are the best Garry. I know the exhaustion you speak of and can only say,thank you for writing this piece. It must have been difficult.

Jun 27th, 2012 3:53pm

One of the most refreshingly honest and sincere articles om this subject that I have read. I too have no support from my spouse's family so I can empathise with what you are going through.I hope that this gets through to them.

Jun 25th, 2012 5:29pm

Hello Gary I feel your pain and agony. Thank you for being so honest. I have a simular situation. Thanks so much for this information. I am currently experiencing the same situation as I am the girlfriend of a male partner who was involved in a fatal car accidient that claimed the life of his father. This happened 5 years ago and I am still dealing with his head injyr effects. He is impulsive, verbally and emotional inappropirate, egocentric, and overly sexually stimlated. I have grown to dis-like him and feell used at times as I have sacrificed alot for him even more than his family. We are not married and I quickly shy away from this and try to discourage him from asking. I have tried on mulitple occasions to talk to him about how i feel to only have an explosive argument in the process. I am emotionally drained and tired. I moved form TX to CA to get a way for a while while also seeking a movement in my career. He has now moved out here as his family were tired of dealing with him, but I insisted he get his own place. I often feel guilty and I believe that is why I am still in a relationship with him that is completly unfulfilling. I am not able to have even an slight conversation with him about work or anything before he immedicatly sees other objects, people or situations to comment on in thmiddle of my comments. I am so unhappy and have no one to talk to who understands or even wants to listen. I have never felt so trapped as I do now. I am seriously thinking of leaving him and just being friends. However, I will need to carfully craft this as he is very impulsive and somewhat unpredictable. I am not a person who has problems with anxiety but I have found that I need help in this area now that he is here. It is only a matter of time before he says or doses the wrong thing at his job , loses it and his apt to come running to stay here. This is a constant fear of mine as I am not responsible nor do I want to be responsible for his mistakes and issues. I need emotional satisfaction and happiness out of a relationship and I am not getting it here. One day, while he was in rehab, the social worker called me to find out “what was wrong with me’ as it was unusual for someone to be so devoted to a Head Injury such as his. She aked me somthing 5 years ago I never forgot and that was: ” you will never get anything out of this relationship”. I was so offended at the time but now I know what she mean. I hope some one is able to help. I just don’t know what to do. lisa

Feb 15th, 2012 3:39am

Don\'t we all feel like that? 15 months into an extremely severe case that started with several months in ICU/Neuro. Umpteen doctors, tests, therapy sessins and medication. Early 30\'s, 3 kids under 10, work full time, all of the responsibilty and then some. It\'s a bad hand to be dealt. Im tired of the comments of how aweful I look because I am bairly functioning due to exauhstion, empty gestures of help of guilt, comments behind my back and people choosing to turn a blind eye so they don\'t have to deal with it or except it(mainly family and close friends). My favorite is the Monday morning quarterback on how I am doing things. Unfortunaltely I have found that my spouse pushes people away and minimizes behavior to prevent the questions and visits. I have also found a shocked look of surprise when I tell people the reality of the situation. I only expect further seperation and lack of understanding from others and quite frankly, I am tired of asking for help. I barely have enough left of me to keep my spouse, kids and basic responsibilities afloat. So to all of the spouses and caregivers, it is one day at a time. What you don\'t get done today...try tomorrow. And if you wish you had done something different today...try again tomorrow. There is no field book, clear answer or cure. I have found that my priorities are much clearer since the TBI. I figure their loss, not mine. I have a spouse and 3 kids to worry about. Not the unneeded comments, stupid adivce or lack of educataion from others. Best wishes to all in my shoes. Stay strong and don\'t forget how to love who\'s important and laugh at the stupid things.

Feb 1st, 2012 2:32am

Gary - Ive walked in your shoes many times over - I tip my hat to you and those close to you should- must- step up -doing this alone is not the way to go for many reasons and will only make matters worse in the long run. If I can be of any assistance, please do not hesitate to contact me at bud1270@gmail.com. Brian

Jan 14th, 2012 3:53pm

I completely feel for you garry. However my story is of my daughter. She is completely dependent on me. I still don\'t understand how my family could desert us like they have. I am single, I also have a 15 year old. He was ten at the time. And have sworn to never put her in a care facility. As her mother I cannot! But I am tired, there is no relief in site. No way to go but, forward. but I can feel my body giving way. I have came right out and said the words \"please, help me! I get \"sure of course, but how about the second Tuesday of next week? Which of course never comes. I\'m just so tired physically, emotionally and mentally. But tomarrow is a new day......

Jan 2nd, 2012 10:54pm

For Jessica... An excerpt from 'My Latent Self, Recovering my Soul after Brain Injury.' There is no conscious comprehension of miscommunication on our part, and the only ones who can fathom this are you, our helpers, supporters, our markers and signposts. Those of us with brain injuries are always giving one hundred percent; it just comes out or across as maybe five. We have no recognition of what is missing, or that anything is awry, and giving feedback in the same way as you would do to any ‘normal’ person, goes straight over our heads.... Worse still, is when people don’t give us any feedback at all, because they aren’t sure if it is our circuitry, or ‘us,’ that has gone awry. Either way, if we aren’t getting it ‘right,’ then we need to know. We don’t only need correcting; we also need an explanation, just as any five-year-old does. When we still don’t understand we will also need your endearing patience, especially for the times we unwittingly throw your help back in your face! We simply don’t know any better – we just think we do! I guess that dealing with us can sometimes feel like you are trying to shift a dead elephant on a single roller-skate. You will need patience, but you will also need to be flexible and creative... I get that we confuse people. I can totally understand you have no initial idea as to how to relate to us, and I realise you have much to learn in order to be able not only to help us, but also to be able to deal with, and live with us. What we unknowingly ask of you is way beyond the normal call of duty. If brain injury has never cropped up in your life before, then it is inevitable that you will have no experience of dealing with someone who has been brain injured, and that you too will feel lost, confused and frustrated. I can understand the grief, the mourning even, for the apparent loss of the soul you have always so loved. Who is there to assure you? Who is there to train you – the one who becomes the inevitable trainer? How are you best able to learn the new communication skills you will need? Do you even know, or recognise, how our dependency on you requires that the way you have always perceived and judged the way we cognitively function, needs to change? The confusing part is how to separate what is a lack of brain function, from what is not a change in personality. I am sure you all know that the changes in behaviour which occur as a result of brain injury are not premeditated; they are accidental implications that arrive like frogs falling from the sky on a clear blue day. For those of you on the outside, when our injuries cause you life changes in ways that do not meet with your previous experiences, you can be easily thrown into an uncertain world of rocky ground, which you tentatively step upon in the fear that what is left underfoot, may also fall away. Life can feel undermined, like the crashing waves of the ocean eating away at the bedrock of your existence, eroding your capabilities and normalities, chewing up everything that was once familiar, and leaving you with an inner chaos that holds no direction. I understand that brain injury does not only alter the lives of those of us who are afflicted, but spreads out like the turbulent ripples on a great lake. We don’t know we are affected; we are certainly oblivious to the fact that you are...

Nov 7th, 2011 5:27pm

Well, your letter just goes to prove that whenever you think you're the only one...you're not :-) I have a friend diagnosed with TBI several years ago - her husband treated her poorly and she finally decided to get a divorce. Usually it's the other way around - so you can imagine how bad it is. Sigh - I am not even family. I am a friend who has become her family (sad when you think about it). I have powers of attorney and have taken the responsibility her life so justly deserves. I still don't understand how her family could abandon her so completely. Trying to get them to help is too much work - and not worth the effort anymore. I can't even begin to tell you how difficult it is trying to help someone who is high-functioning with TBI go through the legal system. MY GOD! She isn't even respected by her lawyer (sigh). I do the best I can, but there is no advocacy program in existence that is here to help someone with a brain injury get through something like a divorce. Your letter helped me feel less 'alone'. Thank you.

Nov 2nd, 2011 7:01pm

Wow! My husband said you could have written this. I am so proud of you for writing this and I hope the family got the letter and got the message. How afraid we are to ask them for what their sibling needs. Hang in there and please keep writing. Caregiver at GettingaFoothold.blogspot.com

Nov 2nd, 2011 4:59pm

I am in floods of tears Garry... My heart really does come out to you both. If you need a break then I will fly over and take care of Jessica for two weeks, a month even. I know that I could help her. Please don't give up on Jessica, she won't always be ten-years-old... We do get better, I promise you that we can get better... I promise you that the real Jessica is still there beneath the surface. I can't believe how I was sat here writting about this very thing in my own book when an email popped in from a friend with this link. As a TBI survivor I am the miracle walking. I have had to grow up all over again. I went back to being a five-year-old and was oblivious to everything and everybody in the world around me. I am coming home though Garry, I am coming home... Please contact me through my site. I would sincerely love to help. If I could stick my heart on this page then I would... www.mylatentself.co.uk I will fly out tomorrow x Annie

Nov 2nd, 2011 10:05am

Hello Garry. Thanks for sharing this side of the "story". I can relate to your life because in March 2011, my 47 year old Husband suffered a left (right side affected) stroke. Because of this kind of stroke he still suffers from aphasia. It puts the onus on me to help him speak when he can't find the words. I constantly am speaking for him in company, and he looks to me to do this when he can't get the words to flow. I let him try on his own but the frustration of seeing him struggle in this manner is sometimes hard to see. My husband is getting better but it has changed both our lives in ways only someone such as yourself can understand. I keep thinking I just want my Husband back...the way he was. We moved back to our home province since his stroke because this is where our families are. I can especially relate to the part of your article about people thinking everything must be ok because he seems ok, for the most part, to everyone looking on. They don't see the struggles he has and myself as his caregiver. I recently went back to working part time because I need to for both our sakes. I still think about him when I am at work..wondering if he is ok at home alone. As for the part you mentioned about being self-centered..I find my husband more that way, too. I look forward to reading more from you. Thanks for doing this for us caregivers...it means so much.

Oct 9th, 2011 11:30am

I wish to thank you, Gary, for your expression of what so many of us go through in the care of our loved ones with TBI. I am glad that I am not alone. I aught to send this to the Insurance company and lawyer who are having me kicked out of my brother's home (a TBI survivor of 43 years). I have lost everyone, everything that I own, my children, etc. after being guardian for close to 20 years. I will be on the streets. I have no money for electric nor heat! And no one to help me.

Oct 8th, 2011 10:28am

It is the ten year anniversary of my husband's TBI on Sept. 18, 2011. He sounds about the same cognitively as your wife, a bit worse, like an 8 or 9 year old in problem solving, very flat affect. I had him home for about a year with 24 hour caregivers, that was just horrible, and I lost 30 pounds from the stress. He lives in a private, excellent care home in Southern Calif. I've found that there is one brother (he has three brothers) that can handle him visiting, has enough compassion and sense to be clear on problems, length of stay (3 days), etc. The rest of family and friends, no help. Amazingly, my husband Dwight is able to fly "home" with the staff taking him to the airport, and has been able to enjoy his first granddaughter (although he loses interest quickly). My two adult sons, who live at home, are a "little" help when my husband visits but it's all up to me, really. Dwight needs constant entertaining, a strict schedule that mimics the rehab schedule, and "gives" nothing. However I am lucky to have a settlement (work injury) that pays for the group care home. So very lucky!!! I was feeling sorry for myself tonight. I would never divorce him, I want to be his advocate...we have been married almost 40 years. But the last 10, he has been my child. I find that alanon has been a huge help, letting me release my resentment...my sons have had drug and alcohol problems, and my oldest son has been in prison repeatedly, but has become sober and married, a father, the last 2 years (he is 30). Sigh. Thanks for writing the article even though you were exhausted.

Sep 5th, 2011 2:25am

Gary, thank you for your frank and honest description of compassion fatigue, and the health consequences of caregiving. I wrote a similar letter to my my husband Alan's family several years into his journey with a severe brain injury that led to dementia and Parkinson's. My letter led to some heated arguments, a downgrading of my expectations of them, and an occasional respite break with family coverage. Caregivers need to go public with the health toll. I had several back injuries that led to spinal fusion surgery last year. I also had periods of compassion fatigue, especially for the psychiatric illness caused by Alan's brain injury- and I'm a psychiatric RN! I wish you a long rest,more support from family and new acquaintances, and a spontaneous expression of appreciation from your spouse. Janet Cromer "Professor Cromer Learns to Read: A Couple's New Life after Brain Injury

Aug 3rd, 2011 12:57pm

Wow! A fantastic letter...and I share a lot of what you are feeling...yesterday was the 4 year anniversary...my husband (Garry, with two rs, go figure!) is also high functioning...mostly frontal lobe damage...bursts of anger, I know those...they suck the soul right out of you sometimes! Stay strong and keep remembering YOU!! P :)

Jun 5th, 2011 3:45pm

Garry, your honest and heart wrenching plea to your family struck a cord with me! Your letter makes me weep every time I read it. It could have been written by me. I have had the identical lack of support, empathy or compassion from my own family/friends for the past 22 years! I have been a single mother through it all and my "adult" daughter's care giver, teacher, mentor, bookkeeper, memory, and the push and constant reminder - also with "no light at the end of the tunnel"! Similar to your wife Jessica - my daughter's TBI is invisible. She drives and even went back to college P/T to finish the courses she was taking when the initial accident happened. Afterwards she tried to work but the pain from breaking her Thorasic spine in 4 places and dislocating her shoulder in the same car accident, plus her cognitive problems, all prevented her from trying to work. Our problems did not stop there - 3 years ago she was rear ended by a large truck and 3 weeks later hit by a taxi. She now has cervical damage and chronic daily neck/shoulder and back pain all over again. She tries to live independently which puts more pressure my job as her care giver. It is an exhausting life-long job, as you pointed out, but the burden could be lessoned for us if the family members and/or friends would step up to plate and offer some help. I wish you luck in reaching out to your family. And I wish you well. Please take care of yourself. Thank you so much for taking the time to write this letter. God bless you.

May 11th, 2011 5:26pm

Amazed and overwhelmed just reading this. We have a son with a TBI and his fiance has taken the role of caring for what he needs as well as pushing him in his recovery. It seems he does less and cares less about recovery when he is with us. This is good information for the future. I pray that Jessica's family steps up and takes responsibility.

May 5th, 2011 8:54pm

I wept when I read this, I pray that her family will give you a break more often than you have asked! I pray that we would all love each other enough to lift each others burdens, so that those like you and your wife...could be refreshed and be able to enjoy simple things in life, so each day is filled with hope and not hopelessness! May christians reach out to you and others, to help love you and your wife by being Jesus hands,feet, words, heart and life! A TBI christain female...Terri

May 5th, 2011 3:41pm

Thank you for verbalizing so many of my thoughts. I have my husband to help me with my adult daughter who suffered a TBI 4 1/2 yrs. ago, but we are aging. It has taken a toll on our relationship. How difficult for you to go it all alone. God bless you, I will keep you in my prayers.

May 5th, 2011 3:05pm

God Bless You, Garry! You have said everything that I cannot say. In spades. Peace be with you. Teri

May 5th, 2011 2:25pm

God bless you Garry. Our son also has TBI...it's a struggle, that's for sure. He, too, looks normal enough, can drive, etc...but holding onto a job is another matter. We've fought Social Services for many many years. We pray that your situation improves and that Jessica's family puts a real effort to support the love that you have for her. Take care of yourself as well! Pam

May 5th, 2011 1:53pm

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