Greetings. I am brand new here, just discovering this today while I was researching information on brain aneurysms and subarachnoid hemorrhages.
I am typing this sitting near where my wife lays on a breathing machine in a near unconscious state two full weeks after her rupture. She has had a couple of days of lucidity where she was able to open her eyes, raise 2 fingers, squeeze fingers, etc but today and yesterday weren't some of those days. It's all just up and down.
I have to say I am impressed or surprised or both by how calmly and without panic or drama you can all talk about what has happened to you or your loved ones. I am so scared I can hardly function. THe only thing carrying me through is knowing that I have to be there by her side and always upbeat when I am - other than the couple of times I cried my heart out pleading with her to come back.
I went to work for a half-day a couple of days last week but was so non-functional I couldn't keep it up.
I know that you must all love your loved ones as I love my wife. So someone please tell me how you get through this because so far, I am just barely making it.
Hi Dale, Sending you warm and healing thoughts during this time. And no, most of us at one time or another were NOT calm. I am a survivor of a leaking aneurysm with an SAH found during my surgery. I believe that what we go thru is in some ways tougher on our loved ones then us at times. My partner has been by my side through it all. Many days we have both felt frozen and unable to cope with the overwhelming issues of my long health journey. Please let us know how your wife is progressing. And know that there are many people here who will listen and offer support. Take Care, Mary
Hi Dale and Welcome...~ Not us a site any one of us wanted to join, but if we must, BAF is very supportive...~
We speak so calm about our Brain Aneurysm's...because it has become such a reality...maybe we as Survivors have come to the point of "Acceptance"...this site really helps put things in perspective for many of us...That being said...Please know ...
That this journey is long...and it takes alot of rest for the brain to heal...and You as the "Caretaker" must take sometime out for YOU and to get your rest...also, a good cry is highly recommended...and if you Believe in a "higher power"...lots of prayers...Please keep it here .. and Know you are in our Thoughts and Prayers...along with your wife...~ Cyber~Hugs your way Colleen
Hi Dale, sitting here with tears in my eyes and my heart goes out to you. Reading your story brings me back to when my husband had his rupture. Everything happens so fast, then your waiting and then you have no idea what to expect.......I can only imagine what you are going through right now and I will be praying for you and your wife every day. As far as being calm, I can tell you there are still days when the calm is just not there..
Thanks all of you for the replies. I am glad to find a place where I can talk with others going through the same thing. I hope my wife will embrace it when she can. The whole thing is so scary, it is good to see that there can be hope. We're not far enough along to know what that hope can be but for now we can at least know there is hope.
There is so much to learn about and so many questions. The doctors and nurses have been fantastic but they speak on a different level and always seem to want to generalize and perhaps protect us from details - or perhaps I am just a personality type that asks too many details. I know they are doing not just their best but that they're doing a great job. But I m really looking forward to reading more here and asking more to get the perspective from others going through the same.
First let me express my deepest warm wishes and healing thoughts and prayers to both you and your wife. I sit here with tears in my eyes after reading your post. I can feel both the love you have expressed and the pain you are feeling, all mixed in with every emotion each of us have experienced at one time or another. I will keep you in my prayers and thoughts.
To say that we deal with our "new" lives calmly, without panic or drama is an attestment to what strength, healing, and a lot of prayers everyone here at BAF feels and gives back to each other to get through the different stages of healing and surviving.
I wish I had the magic words to say to you that would make you feel that you can get through this, but I don't. Just know that you are not alone and that everyone here is pulling for your wife, so please keep us updated as to her progress.
I will keep you and your wife in my thoughts and prayers.
hi dale-i am calm because i am exhausted but i try to remain positive,panic and drama would serve no purpose and might even be detrimental. i try to help & support others on here to repay all of the love and support i have received. So sorry your having to go thru this- i was also in a coma a few days so my family could probably advise you better-but don't give up and people say to keep talking to them even know they are unconsience- they can hear you but can;t respond. i recall my sister saying one day i opened my eyes and smiled- i prob smiled cause she smiled-its contagious! i believe all things are possible w God, so my thoughts & prayers are with you, your wife, and your family
I prayed myself into a surreal state with God to keep my wife here. He touched me, and together we kept up our end of the bargain. Like that night 18 years ago, I remember it like it was yesterday. Although it hasn't been easy throughout, He never said it would, and that I accept graciously. God Bless!
Dale- I am glad you found and posted on this site---I am fortunate that my husband and family made sure that there was an "advocate" for me while hospitalized--every day (no easy feat considering I was in a city/state not my own). Prayer and positive thought are of the most importance-Dana
hey there-im back! just wanted to say i luv Colleenes phrasing "point of acceptance" that's IT!! Calmness is not accurate for the rocky road we travelled although the roads much smoother now and things are calmer-especially since i was supposed to be in a nursing home for my duration on the planet -or worse,anyway hoping and still praying for accellerated healing and some sort of calmness and confidence in Gods healing power for you,please keep us posted-we care-ps survivors are the responses thus far -Are there any caregivers out there that can advise Dale on coping-im afraid since i was comatose im not much help other than pray,pray and keep praying,Good luck & hang in there-your calmer times are coming!
Dale I am the survivor of a subarachnoid hemorrhage. 3 years July..Your post brought tears to my eyes..You made me think of how it must have been for my family and the uncertainty they must have been feeling. You have a journey ahead of you and my prayers are with your entire family. This community is an awesome place for answers and support. Dont give up! That's my bit of advice....no matter what don't give up!
Dale--it took me awhile to understand what the heck happened to me--months in fact. I don't think I will ever really "understand"-I, like Darcy, am pained when I think of the fear and uncertainty my husband and family went through--in my case for months..(read my bio) I also know they never gave up hope...Please keep us posted--Dana
We're on day 15 since they did the coiling, day 16 since this started. After about day 5 they put her on a respirator which they just took out today and did a tracheotomy. She definitely looks better today than she did with the tube in her mouth. She has been more responsive in the past than in the last few days - that worries me. But she also has not had any vasospasms for a few days now, either. So maybe now she is really starting to heal.
Thanks to all of you for your responses. I'm really glad to have found people who really do understand what it's like. Like Darcy and Dana said, it is hard on the families. But it's not supposed to be about us. Not in the way of complaint, but sometimes I feel very guilty for even thinking of how it affects me and how it would affect me if we lost her. It feels so selfish. But I know it is part of it. It's part of it because she's so much a part of us.
Debbie has been a stay at home mom and wife for 39 years. Because of that she's been able to be there for a lot of family through a lot of life's toughest times. Her two sisters and her brother call her almost daily to share each others lives. Our kids and 8 grandkids all depend on her and talk to her almost daily. Her parents live next door. Her mother is bedridden and, along with Debbie's father, have depended on their time talking to Debbie as a big part of their outside interaction and their life.
If I work out of town, we survive by way of unlimited mobile minutes on our cell phones and talk for hours a night. One doctor she had tried to tell her we were too co-dependent. We didn't try to fix it; we're perfectly OK with that.
She is the center of the earthly world for 4 generations.
I don't mean to ramble on about her; only to share just how important she is to so many people. I know, for each of you, your families are just as important in your own unique ways.
First of all, my prayers are with you and your family. I had a coiling done 3 months ago and am just now returning to work very part time. Mine did not rupture and they found it only by doing numerous tests to see why I was having strokes with none of the typical risk factors. My 14 year old daughter and husband were with me both times that I was taken to the ER and they were by my side in the hospital the entire time. My husband has finally started doing some of the the things he loves like golfing and even went back home to visit his family and my daughter is doing well. I think this whole process is harder on the loved ones and it is so important to take time for yourself and celebrate the little victories in recovery. While in the hospital, we kept getting conflicting stories and my husband finally befriended a nurse who made it his mission to give us as much information as possible. He even told us about the anuerysm before the doctor did! You have a right to as much information as possible and dont be afraid to ask them to repeat themselves! Accept the help from family and friends and take care of yourself. Your wife is lucky to have you!
I have had a few discussions with charge nurses and the "family nurse", as well as doctors. I was told we are asking more questions than any patients families they remember. I don't want to sound negative because she has had some absolutely fantastic nurses and doctors.
We got (what I think is) bad news today. Until today, they always talked about her getting better, out of ICU, into a regular hospital ward and, eventually, home. Today they are telling me she will have to go into a long term acute care facility. Her physical condition has improved to the point that she doesn't need to be in ICU or a regular hospital. They will take out the cranial drain over the next day or two. That is the last physical risk. The long term care facility will be working to wean her off of the respirator and, if she can learn to swallow again, remove the feeding tube from her stomach.
10 days ago, before they put the respirator on and when she could talk, even post-coiling, she could say my name and respond to commands. Today, no such luck. Her eyes open but the only on-command physical movement we can get is a slight squeeze of our fingers from her right hand.
The vasospasms stopped days ago and she was supposed to get better then - but she has not. I don't know how scared to be - so I am probably over scared. Has anyone else had or dealt with a similar path?
I can't tell what part of the country you're in but there are facilities that specialize in brain rehabilitation. Our experience was with Bryn Mawr Rehabilitation Hospital located Malvern, PA. There are numerous others elsewhere. Take a look at the Bryn Mawr website and you'll understand how these facilities might be able to help your wife. Since you will be your wife's advocate it will be important to find the best place for her, within your means and insurance of course.
We're from Oklahoma. We live in a rural area about 75 miles from the hospital in Tulsa where Debbie is now.
One of the doctors suggested a place here for the extended care but said I should visit each one before deciding. I expect to hear more about it tomorrow and get a list. Then I will contact them all to arrange a site visit.
Dale I so feel your pain, my boyfriend is currently in the ICU coming out of an induced coma and a craniectomy. and to be honest with you I am only able to keep myself together when I am around others, when im by myself I am constantly thinking about whether or not it was signs I should have saw for this to not have happened. What has honestly kept me together has been my faith in Jesus Christ. I'm not sure if you have any religious affliations but I would definitely tell you to lean on whoever you call your god. Also I keep telling myself that I have to be strong for him. I dont want him to feel like im not handling myself becuase I want him to know that Im strong for him becuase I know he is just as scared as me.
Stay strong and take it one day at a time. I wish your wife all the best in her progress.