How to help and understand emotionally

My girlfriend had a AVM bleed Feb.10 and has been home for several weeks. She is recovering well and is awaiting Cyber Knife treatment. This has been very difficult for her going from a very strong and 100% healthy young lady of 46, to almost dying out of the clear blue sky without warning. As the man who loves her I'm asking for help in the emotional part of this. Unfortunately I haven't handled the past few weeks well and any advice would be appreciated so I can be the support she needs while going through the next months, years...

Thank you,

Paul

Hi Paul and welcome.

First, kudos to you on reaching out and trying to find out what you can do to be supportive. I've often thought about how much more difficult it is on our loved ones sometimes.

Without knowing the specifics of your girlfriend's situation, I can give you some basic information. I think the best advice I can give you is to have patience, lots and lots of patience. I don't know if she has memory loss, but if she does, repeat things as often as necessary while trying not to become frustrated doing so.

Many people that have an injury to their brain experience a certain level of frustration themselves as they can't do everything that they were used to doing. Be mindful of that. Offer to help often, but she also may want to try to do things for herself. Let her try.

Try to find out specifically what she needs help with so that you can be most effective in your help. She may not always know she needs help until she tries to do something that she has trouble with, if that makes any sense. Like for me, I didn't realize I needed help filling out forms because I couldn't write on the lines. So right now she may not be aware of any deficits that she may have.

I guess the last piece of advice I could give you would be to just love her, which you obviously do or you wouldn't be here! Best wishes to you both! And I hope I was a little bit helpful!

I appreciate the extra hugs, an affectionate smile and the knowledge that I am loved even though I am flawed. My husband holds me while I cry, listens while I rant, reassures me when I am afraid, gives me space when I am being reflective and above all is committed to me no matter what happens. While friends and family have wavered in support, he has remained steady. It must be awful for him (and you). I am so grateful to have him beside me on this unexpected adventure. I am sure your girlfriend is too. Good luck Paul.

Stephanie I think we both are very lucky women. My husband is the same way and I am immensely grateful every day!

Think of the things she enjoyed before. Ultimately her likes and dislikes still remain. Attempt if possible to enjoy some of those favorite activities together She will remember even if she can’t express her memory or appreciation. I had a favorite drive along the Coast of the Atlantic—This is an example of something she may have enjoyed and you may still be able to enjoy together–favorite music—dining or pets are always nice ways to spend together

Hi Paul,

Welcome to the site. My wife had the AVM show up when our kids were like 6 and 8. Early on, just as in your case, we weren’t sure if she would live or die, or if she did live, would she have any function at all, or just be a shell?

Chari is a super active person, a great elementary teacher, and an excellent Mom. It was hard for her to accept that she needed to slow down to allow her body to heal. More than several times, she would go and go and go, then literally hit the brick wall, and be down for 24 or more hours. REST is a key component to recovery. I like to compare it like your brain has been involved in a train wreck—it’s going to take some time to get itself and your functions back together. Allocating “nap time” every day for the next year is not excessive—REST.

For us, Chari had seizures. We were told don’t skip meals, get plenty of rest, and go easy on alcohol. In a few times of high stress, she did have seizures continue even when she was anti-S meds.

Facing an AVM is a potentially life altering or ending experience. A close call is like a wake up call, and lets all involved know that none of us are invincible. It affected all of us enough that we went to individual and family as a whole counseling with a Christian counselor we know. Chari had taught his daughter in 4th grade when the Mom died of cancer about 15 yrs previously. So in addition to his school training, we knew he’d understand the path we were entering. ALL of us benefited from the counseling.

The AVM made us more focused; we knew life was indeed precious and we didn’t sweat the small stuff as much as we did previously. It made our love stronger. Our counselor suggested that Chari keep a journal of her feelings every day. It helped her (I don’t know if she keeps that up or not).

Good communication with her is going to be important. I urge you to celebrate even the smallest gains. Know that setbacks will show up, but never give up.

A good circle of friends and family is important. Being always on the ‘giving’ end (meals, visits, etc to sick friends), it was difficult for us to be on the ‘receiving’ end when friends wanted to help. Understand that your friends need to have a role. Appreciate that and allow them to help.

Whatever you can do to lighten the load, I recommend you do it. Send the laundry out or you do it. Hire a person to clean the house. Plan in quiet time and time to reflect, read motivational writings, listen to motivational speakers.

Chari couldn’t drive due to seizures. A simple flag with a “G” on it meant we needed groceries or a ride to the grocery store. A “W” meant walmart. Our neighbors, who are also good friends, would see one of the flags on our mailbox, call us or stop by to either get the stuff we needed for us, or would take Chari to the store when they made the next trip. It was important for her to get out as well due to cabin fever……………..

Hope this helps.

Ron, KS

Hi Paul,

It is fantastic you ecognise that you could of handled the past few weeks a lot better, its a great start and to me it shows that you really want to support your loved one through one of the most draining and psychologically upsetting experiences that you with both have. Firstly, don't be so hard on yourself - we are all human and although it would be nice that we all had it in us to expertly know what to do all the time, the real fact is it all comes down to experience (and some common sense) the main thing you can do is be there - and be there.... but make sure you give yourself the unselfish time out you deserve too (of course this might have to wait for a little while as things get on to track) how have you been feeling and coping with this make sure you have the support you need to (from us) and from others around you, and if you feel the need medical help also. It is a trying time, not going to lie about that, as long as you remember there is always help out there, for you, for your loved one - and as you have done all you have to do is ask!. Does your girlfriend have memory loss, or how is she recovering...just to help us have a better understanding what you are going through and where we can give advice (or a lending ear) on. :D keep us updated. x

Hey glad we can help Paul.

Sometime the person (any person really) won't know why they feel the way they do; I know I suffered from depression several years ago, went to a counselor, and he kept asking me "Ron, what is it about your work life that is stressing you so much?" I couldn't lay my finger on it, but we continued to talk. After the 3rd session, the light in my head finally came on and I wrote down 3 typed pages of things that were stressing me about work. The more I wrote, the more I discovered how stressed I was.

When I showed him my lists on the next visit, he read through them, and said "WOW, now I understand why you are so stressed!" That was really a breakthrough moment for me.

I got better, no longer depressed and I'm normal normal normal normal normal normal (grin).

The AVM for us meant that her health was now #1 at least for the short term. Our schedule was modified to fit her needs (not to get too tired). I became her advocate/body guard; if she was too tired to have friends/family over, I'd either intercede to reschedule visits, or I'd not hesitate to excuse us for a moment, escort her to the bedroom, and return to visit friends/family. Everyone understood and supported it.

Invite your girlfriend to visit here. Most of us are friendly (grin).

Ron, KS

It’s the simple things but he also doesn’t treat me like I’m fragile. He still teases me and has expectations of me. But he understands when I have spent the day in bed or I have forgotten something. All the best to both of you.

Paul Husson said:


Thank you Stephanie and it really is simple, hugs, listening, patience and being here when she needs me. I guess I should just ask myself what I would want if it where me and it would come to the same things.
Stephanie said:
I appreciate the extra hugs, an affectionate smile and the knowledge that I am loved even though I am flawed. My husband holds me while I cry, listens while I rant, reassures me when I am afraid, gives me space when I am being reflective and above all is committed to me no matter what happens. While friends and family have wavered in support, he has remained steady. It must be awful for him (and you). I am so grateful to have him beside me on this unexpected adventure. I am sure your girlfriend is too. Good luck Paul.