Becoming my Husband’s Caregiver after his Brain Injury

Caregiving after Brain Injury

By Irene Young

Challenges and rewards of caregiving

Most of us have had the blessing to watch our children take their first steps, to hear their first words, to witness their first everything and to embrace them as they overcome the obstacles in their life.  Imagine if you would that it wasn’t your child, but your husband, your sister, or someone who is very close to your heart. I have had a recent experience that most wives don’t usually get. I have been blessed for the last four years to watch my husband not only live, but overcome life’s obstacles after his traumatic brain injury. Caring for a loved one who has had a traumatic brain injury (TBI) is not glamorous, by any means. But by setting goals and making a schedule, you and your TBI loved one will be well rewarded. 

As the caregiver, you will be responsible for not just goal setting, but you will be essentially the cheerleader for your loved one.  So it is extremely important to train yourself to be happy and positive, even when you don’t want to be. And there will be times when you don’t want to be. The caregiver needs to give words of encouragement, such as “great job!” or “you were very close let’s try that again!”

Recovery from a brain injury

No one really knows if, when or even how much an individual will recover from a brain injury, but setting simple goals can be beneficial to the survivor and the family. Their goals need to be realistic. Start small and work your way up. If your loved one can only hold a spoon and doesn’t know what to do next, set a goal to work on lifting the spoon to his or her mouth. Keep a journal and maybe video tape your loved one working on goals, not to critique it or tell them what they did wrong, but to replay it when the goal is accomplished. When my husband used to say, “I’ll never be able to do that!” I used to read from the journal I kept that reminded him that at one time he was not able to eat on his own, but now he can.

Don’t expect too much at one time. 

This will only add to both your loved one’s frustrations as well as your own. It may take a little longer than expected, but stick with the same repetitive goals. Remember your loved one has to retrain his or her mind to do things that you already know. I can remember expecting my husband to be able to do a simple thing like hug me, but even a simple hug needed to be retaught to my husband. It took him a whole year to learn how to wrap his arms around me and my daughter and gently squeeze. But when this blessing finally happened, it was like a fourth of July celebration at our house with fireworks.

Know when “Enough is enough.”

I cannot tell you how important this is. Sure go ahead and push your loved one, but watch for signs that signal he or she has had enough, such as getting angry, throwing things, or irritability. These are pretty good signs that your loved one needs a break.  Keep in mind that their attention span may not be as long as it used to be. As  the caregiver, try to think of your adult loved one as a child; I know it’s hard, but it is sometimes easier to make goals and set time limits if you keep this in mind.

Get organized!

As the caregiver you also need goals – this includes goals on becoming organized. This was very hard for me to learn, but I soon realized that people with a TBI need structure and don’t usually like change, so I had to put myself on a schedule. If you have small children or if you want a life after TBI, I assure you that you will need a schedule as well.

Set time aside for your TBI survivor, time for your children and time for yourself – all of these people are very important.

Set time aside – for yourself and others

I physically wrote the time I scheduled for me from 5 a.m. to 7 a.m. in a date book. It was my time to paint my nails, read a book, spend time with God and anything else that was just for “me”. You are not being selfish when you schedule things just for yourself. On the contrary, you are taking care of yourself so that you can be physically and mentally able to take care of your family.

Then, I would have time set aside for my daughter to play a game, color, or just sit and talk with her. While my daughter was at school, it was time for my husband: getting him ready for the day, bathing, dressing, feeding and helping him with his physical, occupational, and speech therapies.

Once I got good at these tasks, I found that even though I had scheduled time for them, it didn’t take me nearly as much time as I had originally scheduled. This gave me a little bit of time in between for a much needed rest.

Being a caregiver is all worth it

Yes, caring for a loved one with a traumatic brain injury can be very exhausting at times, but the challenges never outweigh the rewards and blessings for both the caregiver and their loved one. Watching your loved one take their first steps, hearing their first words, and witnessing their first everything are beautiful memories that will be remembered for a lifetime.

Be patient, goals are easy to set, but not as easy to attain, it has taken my husband four years to be able to take six steps without the help of anyone. He can now bathe himself on his own, and do all of his personal hygiene. It may take him two hours, but the fact is that he does it without any help. Questions that used to take him two or three days to answer now take only one day. His greatest goal he says is being able to tell his daughter how proud he is of her achievements, which he does on a regular basis.  

 Recommended reading

 

 

Life Changes: When a spouse or partner has a brain injury

 By Janelle Breese Biagioni and Marilyn Lash, M.S.W.

Information and tips to help spouses cope with feelings of loss and adjust to changes in roles when a husband or wife has a traumatic brain injury or blast injury. Explains importance of self-care and setting up a support system to cope with and relieve stress in families after TBI.

 

 

 

HSDPHelping Sons and Daughters: When a parent has a brain injury

By Marilyn Lash, M.S.W. and Janelle Breese Biagioni

Information on emotions and reactions of children when a parent has a traumatic brain injury (TBI).

 

 

 

 

Managing Care and Services after Brain Injury: A workbook for families and caregivers 

By Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.

Families become the real “case managers” for services in the community over time, whether is it a son, daughter, parent, sibling, or spouse who has a brain injury. This workbook teaches families how to communicate effectively, set goals and plan for the future, locate and coordinate services, make referrals that get results, advocate for services and funding, and evaluate what’s important.

Every family can use information in this workbook to cut through barriers, find resources, locate services, pull together care plans and build a future.

 

Lash Blog Permission

11 Responses to “Becoming my Husband’s Caregiver after his Brain Injury”

  1. Dear Viredia,
    Usually I would recommend that your husband be seen by a neuropsychologist experienced in brain injury given the recent change in his behavior. However, I understand that he is unwilling to do so which must be quite frustrating for you. That does not mean however that you can not seek help for yourself and for your children as you are living with this everyday and it is bound to affect you. I encourage you to consider seeing a psychologist or social worker for yourself who has experience in long-term brain injury. There is an organization call well spouse at http://www.wellspouse.org which has excellent resources and support. I also suggest contacting the brain injury association or alliance in your state as most have support groups and workshops for families.

    If you feel that your safety is at risk – or that of your children – it is important that you have a safety plan for your protection.

  2. Viredia says:

    I am having issues dealing with my husband 5 yrs after brain injury. We did reasonably well for 3 yrs with his behavior but in the last 2 months things have really gone down hill. He says everyone is controlling him and becoming verbally abusive and physical. Just a few weeks ago we had to call the cops out. I can’t get him to seek treatment for his behavior problems. Mainly because he doesn’t see how inappropriate his behavior is or how mean he is being. The worst part of all this is that he has really been saying mean things to our 14 yr old son. Most days I feel like I have 2 teenagers in the house not just one. Any suggestions on how to get him leveled back out? Or cope with the problem.

  3. BrandySue says:

    I am just at the beginning of the long road of TBI. My husband fell 37 feet onto a concrete pad about 9 months ago. I’m finding as time goes on I am trying to find our “new normal”. There are many times he is adolescent in his behaviors and so it is at times hard to accept the future. I have to believe that The Lord spared his life for a purpose. He was a Glasgow 3 upon arrival to the trauma center and on a vent for 5 days. Now he can walk, talk (and even yell A loT). He had a midline shift and frontal lobe injury. So many times I feel as though my husband died that day in April, but I’m trying to get to know the new man that God has allowed me to keep for now.

  4. Faith says:

    My husband survived a TBI almost 5 years ago. He has recovered and is back to work. To everyone else I am sure our life looks not only normal, but nearly perfect. Yes, he is a bit more curt in his responses to others and his personality isn’t quite the same, but he is still dearly loved by us all. The hard part being a spouse is the anger in his eyes and frustration he feels is all directed at me. It seems nothing can make him happy or at least not for more than a couple of days. It is hard not to take that personally. It is hard adjusting to the reality that the love and tenderness shared in a marraige is forever altered. I strive to remember to be grateful for the simple things.
    God Bless

  5. TBIPARTNER says:

    Hey there Dee (TBISPOUSE) I have to agree with you & thank you for posting the reality of living with a tbi survivor. Your days sound like a mirror image of my own. Lonley & unappreciated are words that most likely ring true to many of us. Sure there are good days but sometimes the lows take over and they feel endless. Hugs & strength to you.

    Are these books available for online reading at no charge to caregivers?

  6. tbispouse says:

    Irene,
    You wrote a good article about your experience, the problem for me is that it reads more positive than realistic. My husband sustained a TBI from an MVA in 2005. I get no help from his family and I am more his mother than spouse. He won’t help me with cleaning the house or any chores for that matter. I feel hopeless like my life is at a standstill, I don’t get any adult love or affection from him. He is like a 17yr old who sits around the house all day watching movies, playing games & making messes everywhere. I am constantly cleaning up after him, at the beginning of therapy he liked it & always groomed himself. Now that therapy is long over with, I have to beg him to take a shower. I feel so isolated & all of our friends have dropped us. We are in the 7th yr post TBI & I had to recently quit my job do to the fact that my husband cannot drive or take care of himself. I have Spinal Stenosis & Fibromyalgia which I fight everyday, when I had back surgery two years ago, my sister took care of me & could not believe how much I have to do on a daily basis. I have since had a nervous breakdown which medically means my Adrenal Glands are not working properly. At this rate I believe I will be dead before him. I do not consider this a blessing, I don’t know what you would call it. I feel as though we are not living but merely existing. This may all sound dark & dreary but I wanted to share the other side of this sad story. Thanks, Dee

  7. Dear Melissa,
    You will see many changes in both your husband and your responses as you follow this journey of brain injury. There are many possible reasons why your husband is resisting your help. He may not fully understand what is happening to him, he may be withdrawing in response to the emotional trauma associated with his injury, he may have trouble following instructions, or he may find it uncomfortable or painful to do some of these activities. I suggest talking with the nurses and therapists who know him best to ask for strategies about how to approach specific activities such as dressing, bathing, etc. If you care caring for him at home,I hope you are having some help from a home care agency as caregiving can be emotionally and physically exhausting.

  8. Melissa says:

    My journey is just beginning. My husband was hit by a bus, on November 22, 2010, he suffered TBI, as a result of the accident. Currently, he will not let me help him do anything, take a shower, flush his feeding tube, eat or anything. I don’t know quite how to deal with it, yet. Any suggestions, would be much appreciated.

  9. I am currently interested in the book titled “When a spouse or partner has a brain injury”, however i am currently deployed in support of OEF. How can i get this book, so that i may be more informed when i return from deployment?

  10. Caregiver says:

    As a caregiver to my husband I appreciate the ideas and wise advice in this article. I am recording our journey on my blog page and encourage others to do the same. The writing and focusing on the ups and downs of being a spouse of a person with brain injury help me to be as positive as I can. It is not an easy journey, but the reward is there. Thank you for Irene.

  11. Sarah says:

    A great website for caregivers of veterans and caring for veterans with conditions such as TBI is http://www.veterancaregiver.com.

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