Turn Text Only Off
RSS Feeds
Page Utilities
Garry Prowe, BrainLine Page 1 of 2
A long-time caregiver writes an honest plea for help and support.
Dear Joe, Laura, Barbara, Robert, and Kathy,
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 Jessica 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 Jessica, 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 Jessica 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 Jessica’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. My sister Jennifer comes once or twice a year and I can always count on my sister Barbara. And I’ve tried to be able count on you. I’m particularly concerned about what would happen to Jessica if I should die first.
My health has been steadily declining over the past twenty years and the demands of caring for Jessica 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.
Jessica 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 Jessica, 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.
Written exclusively for BrainLine by Garry Prowe, author of Successfully Surviving a Brain Injury: A Family Guidebook.
Comments [19]
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.
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
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......
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 ânormalâ person, goes straight over our heads.... Worse still, is when people donât give us any feedback at all, because they arenât sure if it is our circuitry, or âus,â that has gone awry. Either way, if we arenât getting it âright,â then we need to know. We donât only need correcting; we also need an explanation, just as any five-year-old does. When we still donât understand we will also need your endearing patience, especially for the times we unwittingly throw your help back in your face! We simply donât know any better â 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 â 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 donât know we are affected; we are certainly oblivious to the fact that you are...
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.
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
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
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.
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.
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.
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
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 :)
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.
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.
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
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.
God Bless You, Garry! You have said everything that I cannot say. In spades. Peace be with you. Teri
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
See All TBI Topics
Footer
BrainLine.org is a WETA website funded by the Defense and Veterans Brain Injury Center through a contract with the Henry M. Jackson Foundation. Government funding support is not an endorsement of WETA or any of its products, including this website.
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 âwhat was wrong with meâ 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: â you will never get anything out of this relationshipâ. I was so offended at the time but now I know what she mean. I hope some one is able to help. I just donât know what to do. lisa
Feb 15th, 2012 3:39am