How do you cope when someone you love survives a brain injury and they will never be the person they once were?

This has to be extremely difficult. A major brain injury has to be devastating to the family. Part of what we love about being with the person might be taken away. I think it really depends on what exactly the injury is. I assume between already having an existing love for the person, committment, and a bit of, there but for the grace of God go I, we cope and hang in. But, I do think the caretakers often suffer in silence. Feeling unable to complain, or even make a new life. I would think one way to cope is to be able to tell someone the disappointments and difficulties of caring for that person. I guess on rare occassion there are personality changes or some sort of silver lining that has some positives, but I doubt that happens in a big enough way that it makes up for the loss. At least not very often. Again it would depend on the injury, which part of the brain was affected. Did the injury cause a physical loss, a personality change, and inability to care for oneself?

Is there really an answer for this question?

I think you just have to accept that life sometimes doles out unforeseen tragedies, and that the person you once knew is effectively gone.

Treasure the memories you have of happier times.

I think it would be especially hard because, unlike death where the person is no longer around, so they’re grieved and then the loved ones can move on, the person is there, present, to be seen all the time. I think the personality changes and physical affects of TBI (traumatic brain injury) would be so hard to have to cope with. I think I would need therapy.

Sending you love and support.

I wish I could help you with this! Unfortunately, I just sorta flailed along the whole time when I was dealing with it…

TBIs are so much more complex than other kinds of injuries, because they affect how your loved one interacts with the world (including you). Some days you might catch a glimmer of your loved one in there, only for that spark to be gone the next. It’s frustrating as well as heartbreaking.

Is there any sort of brain injury support group in your area? A nearby hospital might have some resources

Best of luck to you {{{ @jonsblond }}}

You have my love and support, as well. I’m always here for you.

I had two different friends while I was growing up that had TBI. One in junior hi fell from a horse and received a depressed skull fracture. He missed almost a year of school, he had a limit on walking and running, but luckily no other long term issues. The second was in a auto crash that killed his college room mate. The motor skills also were noticeable but the largest changes were social skills and was easy to anger. Part of it was frustration because he was now limited in doing activities he did before the accident, but the damage to front of his skull apparently changed the way his brain processed and controlled of anger and acting out.

Give the person comfort and find the things they can do for themselves, especially creative things. i.e. singing or painting.

This does involve grieving, as does any dramatic change in our perceptions of the world as we know it. We recently had a question here about the grieving process of a parent who learns that their child is “different” from their expectations. The process is similar when it is the child having to cope with a change in their parent. For most, it is a gradual decline, so the process is lengthy; but in many cases like yours, it is a sudden, unexpected change and there is no way of knowing to what extent recovery might go.

So you are left to deal with grieving the loss of the capable mother you had a short time ago, and yet still have to try to encourage her to push forward toward recovering as much as she can of what has been lost, without pushing too hard. I can’t imagine the complexities of emotions, and the rollercoaster ride will continue for a few years, at least.

In working with elderly and observing them with their adult children, I see a wide range of relationships and coping mechanisms; and I see both sides of this frustrating experience. Despite all that’s going through your mind, remind yourself to not project it onto your mother. I don’t know how cognizant she is of all that is happening, but I am sure that she has her moments of fear and confusion… allow her the opportunity to express this; and check with the staff at the facility to see whether they address the emotional aspects of the patients struggle, as well as the physical. It is still very soon and it is tough to know just how much she will regain, but the research has proven that the patient’s own attitude and drive are crucial to achieving the best rehabilitation results.

Love and hugs to you, your mom, and your whole family <3

You remember the person youy once knew and you love the person they are now because of that. You mourn the loss, but you try to go on. You make sure the person has enough care so that if you are a caregiver you get respite care.

What an awful thing to have to experience.
I think we learn to love the new person while at the same time mourning what we’ve lost. Mourning sucks no matter what and there’s no easy fix. You just go through it.

Faith, hope & love. So sorry.

Love and care for her and yourself as best you can. Lean on your family and friends (including us) when things are hard. We love you, girlie. <3

You are all the best. Thank you! Reading your responses really helps. I’m frustrated because my two sisters who live close to my mom visit less than I do and I live about 70 miles from where my mom is. I guess we all cope differently, but you’d think a person would visit more if they lived close, even if it is just for a few minutes. My dad is with my mom every day, but I know he is getting lonely. He needs the visits as much as my mom does. :/

@jonsblond Is it possible your siblings have not figured out the visits are for your dad also? I think that is really important. Do you think pointing it out to them might make a difference?

It might make a difference They both had a falling out with my mom before the rupture, but I thought they let that go when my mom became ill. My dad is their step-dad, but I don’t think that should make any difference. My sisters are busy with their own life, but when I see them post pictures of hiking and camping trips over the weekends it makes me a bit angry. They visit once a week, if that. Sometimes it’s every other week now. They visit after work on a weekday for a short time, but the late afternoons are when my mom is lethargic and sleeping. I don’t understand how they can’t take one late morning out of their weekend to spend a little time with her. I don’t know how to word it to them without my disappointment coming through and I don’t want to sound like the pushy little sister.

I’d say something. You can’t always be there and they need to step up. I hope that they do.

@jonsblond I understand. These sorts of things are very touchy in families. I have it with my sister and how we care for my aunt. She lives in the same city as my aunt and is getting fed up. It’s different than your situation, because I don’t think you are fed up with your parents, just a little anjoyed at your sibs participation. My sister is fed up with my aunt and also resents she gets the brunt of caregiving work. Do you think your parents feel your sibs aren’t visiting enough? I just wonder if it is something more in your head than even your parents? I wonder if asking them might make you feel better if they are happy they get the once a week visit? I have no idea if it is a good idea to ask, just throwing out ideas.

@JLeslie My dad has mentioned he’s surprised they don’t visit as often as he thought they would. It does bother him. He thinks a familiar face other than his every day might help her improve.

You do what you have to do, @jonsblond, so you don’t have any regrets. Take care of yourself and your family. They need you. But talk to your Mom. Be with her. Tell her you love her. Hold her. Ask her for forgiveness, tell her secrets, laugh with her; don’t leave anything unsaid or undone. Please, don’t have any regrets. You can’t worry about what your siblings are doing. I know it is hard not to do that, but just worry about your own conscious.

I do understand where you are coming from. Crawl into bed and hold her if you have to. Please, don’t have any regrets when it comes to spending time with your Mom. Your siblings will have to deal with their own consciouses.

She is in there somewhere inside of all the cloudiness and confusion and frustration. She’s still your Mom. <3

My family didn’t help when mom got her breast cancer. Sometimes it is all on us to step up for those we love.

You start with one minute, one hour, one day at a time.

The closeness you had with the person drives how you feel and respond to the changes in them.

My nephew received a brain shunt when he was 6 to drain excess fluid off the brain. When he was in college the shunt failed. Several surgeries later, he spent a year on disability and had therapy at a local brain injury therapy center. He still doesn’t have certain memories, and most certainly doesn’t have certain behaviors. For the most part he is still an okay person, but the amount of niceness has fallen. These surgeries interrupted his development and re-set him to his teenage years, though he was twenty. Each shunt failure that required surgery had that effect. He’s now 28, has been out of college since December, and is making as much of his life as he can. He’s still verbally abusive of his mom, never responds to phone calls and that’s life from his point of view, tough to the rest of us.

I work with a lady whose husband suffered a brain injury that put him back to age 12 or 13. It has been incredibly hard for her to adjust to the fact that her retired Navy husband of 40 odd years now behaves like a teenager and she has been frustrated, disheartened, in tears, stubborn and self-sufficient, on any given day for much of the past five years.

This is what we’ve both learned:

You deal with what you can, seek comfort and support from your friends, family and therapists and in taking responsibility for financial and legal matters see your tax accountant and family lawyer as much as necessary. It sucks, but some days are better than others and eventually the equilibrium of routine may be achieved.

Watching someone with Alzheimer’s slowly lose his ability to to think, remember and function is heart breaking. We take each day as it comes and who he is as that comes. He doesn’t know what day it is or what year it is and is always surprised to find out. I know that however bad it seems, it’s going to get worse, so I might as well relax with how he is now and be thankful that he still has a sense of humor, although it’s much less sophisticated than it was. He enjoys food and can still feed himself as long as he doesn’t have to cut anything hard to cut. We still share music we love and baseball games on TV or the radio. We play simple card games. He enjoys reading, although he doesn’t recall what he read a soon as he’s finished reading it.
My advice: take it day by day and at your loved one’s level of ability. Take care of yourself too. The group I sing with is a great support for me.

My poor dad feels like everyone has given up on my mom. One sister said she prefers visiting my mom when she’s sleeping because it’s more peaceful. wth? She doesn’t realize how my mom thrives when she sees faces she knows, but it’s mostly my dad she sees. My sister is only thinking of herself. My heart is breaking.

I just wanted to come back to this q and thank you all for your support, kind words and advice. I’m also sorry some of you are dealing with the same and living with a loved one in this situation. I hope I can come back with words of encouragement for you some day. Thanks again.

Please keep us posted, blondie. <3

WTH is right. :(

Continue to love them because you may discover a new someone who you can love even MORE!!!

Love should be unconditional!!!

I survived a substantial TBI, so my answer is coming from the other side, as it were. I have to say first that I completely support @LadyMarissa‘s answer. It is true that their outward personality may change, but deep down inside they are still the same person. Many of my friends say that I am the same person, just more so. There are some changes, but I am still mr deep down inside. The Brain injury society literature states that many (most?) TBI sufferers state that the most hurtful thing that happens is that the majority of their friends abandon them. The best thing that you can do is stay with them. Deep down inside who they are is still there. Please don’t abandon them! This could be when they need you most. I also am sending you love and support!

@GracieT Nice to see you!

@janbb, thank you!

@GracieT Thank you for sharing your story and thank you for your support. It’s so nice to see you again.