Sorry for the gallows humor; it helps me get through the day. Cliff's Notes: My 48 year old husband had a ruptured brain aneurysm on November 18th in the early morning hours. We had just moved (with our four year old son) from Los Angeles to Indianapolis and this was the very first night in our new home.
Tom, my husband, had brain surgery to clip the aneurysm the following day. He never lost consciousness but following surgery and upon the swelling, had to be heavily sedated for approx. two weeks in the Neuro ICU. He was 'combative' and tried to remove his IV and other lines when not heavily sedated, and blood pressure was an issue as he had mild vasospasm (which never worsened). Ultimately they performed a tracheostomy and shortly thereafter they reduced his sedation and he began to wake up. He was talking within 24 hours and when they took him off the vent to do a breathing test, he did five hours straight the very first day. He has since been off the vent and yesterday successfully completed a 'cap test' which means, hopefully, the trach can be removed. He is very strong and though he has the usual balance and weakness issues that accompany this kind of condition, he's doing very well physically.
All this is to say that, while physically he's doing great, I'm having trouble with the neurological fallout from this aneurysm that seems to have changed my husband's personality. What I find extremely disconcerting is his unwavering *insistence* that he WILL NOT spend another night away from home. He isn't yet aware of his cognitive deficits, and cannot understand why I am complicit with his specialists in telling him he must go to an acute inpatient rehab facility within the next day or two. Yesterday, he threatened to call a lawyer (presumably to begin divorce proceedings) if I did not help him get home. Late last night he also got up from bed and took a shower in his hospital room (he is still a fall risk and is not supposed to do this), bed alarm sirens blaring for half an hour, and called me, triumphant. He had rebelled and proved he is perfectly able to come home - in his humble opinion. He says he will get a taxi cab to come home if I won't help him. He is angry, has diminished impulse control, and is unable to comprehend how his behavior affects me or anyone around him. I understand this to be 'normal' for people recovering.
But any advice or experience you could share on how I might deal with him (he WILL go to inpatient rehab - this is the best option according to every specialist with whom I have spoken). Do I indulge his delusion that he can come home? But then I can't let him come home, can I? Do I continue to tell him the truth and just grin and bear the anger, the arguments, the bullying? Then there is the depression - the extreme low mood - the hopelessness, the anguish at the idea he can't come home - and probably won't be home for Christmas with our son. It breaks my heart and it's not illogical for him to feel this way, at all. It's normal. But given the context, it's also a little insane to think he can come home now, without intensive rehab.
Help. How can I do what's best for my husband??
Huge thanks for your input. And thank you for reading this...
Neilia, I can add nothing but prayers and those I will hold you in tonight. My daughter is just beginning this journey and we don't know which path that will take yet. I just wanted you to know I read your message and send my support and prayers. I find it so helpful to know that there are others there; may he be given peace as he recovers.
Yeah you've got a situation that has got to be driving YOU mad right now....Well, you know your husband better than anyone else does, and i'm assuming you've witnessed more then enough in his personality to be able to say that yes, he does need to go to rehab?? I ask you that for only one reason, and that is when I 'came to' out of my 6 week coma after my rupture, I was told that the deal was that i'd be going into a rehab for a year or so, as this is what was told to my family and my husband....But Neilia, I walked out of that hospital within one week of 'awakening'....and went home, not to a rehab hospital.
I'm sure your Tom has been tested in the hospital by a Neurophsych coordinator by now? What were/are his deficits ? I went home with some right sided weakness, which I worked out myself by doing exersise and by playing computer based games that tests ones reaction times..Cognitively, I was pretty well the same as I'd been prior to my rupture...(although I joked to the doctors that , Oh My God, I forgot how to cook !" (Word up: I've never known how to cook ! lol)
I'm sorry you're inbetween a rock and hard place right now Neilia, I don't think playing along with him on this is a good idea really, I just hope you'll be able to peacefully get thru all this in the meantime. Peace to you , I know this can't be easy!
hi Neilia, oh dear I recall those days- I was not good physically just learned to walk but I wanted out of the rehab hospital so badly, its denial with rebellion mixed in. if he is good physically what is their reasoning for rehab hospital? honestly they never offered help with memory deficits--they only tested it and recorded their findings. My balance is bad too and therapy didn't help so they plateaued me from outpatient therapy. I am 4 yrs post SAH and thankful I can walk a little. This community was the best therapy for me by far, its like socializing practice, hopefully Tom will join us soon here? I do Sudoku and crosswords and lumosity.com for memory work. There are many phases we must go thru-paranoia, anger,sadness, denial and acceptance but generally things improve slowly, I hope this helps. I'm recalling thinking that the rehab was a phsych ward cause a man with tbi was screaming --I gotta get out of here- a nurse calmed me down. It took 2 months to even realize how serious this sah was- at first I couldn't comprehend words then I thought they were lying cause I thought sah was a death sentenance and couldn't see why I would be alive. We are all different and I hope the rehab serves him well, Can he eat or does he have a feeding tube?
Hi All, thanks for your humor and support. To answer your questions, Tom is doing well physically, but all specialists I have spoken with - and I mean 100% of them - agree that it is not safe for Tom to come home, that he needs intensive neuro-psych therapy as soon as possible to ensure his higher-level "executive function" 'muscles' receive therapy now. The sooner he receives this treatment, the more likely he is to recover more function. That's why it's urgently necessary he goes to this facility. I've checked and it appears as though they do not allow patients to go home for any length of time, even for holidays, while receiving this intense therapy. Families are allowed to visit though, and my plan is to bring Christmas to Tom. To me, Christmas isn't about where you spend it, but with whom you spend it. Tom is not understanding this at the moment, says he would sacrifice long-term recovery for this short-term goal of spending Christmas at home. Which is not in sync with his usual, rational thinking. Tom, if all pistons were firing, would absolutely agree that one holiday at a rehab in exchange for a lifetime of wellness and Christmases to come is a small price to pay, and the only rational option. But that's the whole point; he's not able to be rational at the moment. He can't grasp the larger context of his situation. And this facility will help him do so. Which is why, despite my sorrow at not having him home, I must follow all doctors' orders, as well as my own intuition and counsel, and have him admitted to this facility (which, by the way, is one of the best in the nation for brain injury recovery). It is likely it will be a two week stay, so we are not talking months or years.
I'm so sorry Tom isn't going with the plan right now...but two weeks isn't bad at all! Again I wish you peace in getting thru this time, oh yes and I appreciate your "gallows humor" by the way!
We're here Neilia, maybe Tom will come on too in the not too distant future (?) that'd be great. Hoping that in a very short amount of time, Tom's rationality will be right where it was -- Best of luck,
Thanks for your kind words, Janet. Ron, he is eating - nectar-thick liquids and chopped food. He is walking (which I know is a total blessing) and doesn't appear to have much in the way of weakness other than the fatigue that accompanies a brain in process of healing. This rehab facility, Rehabilitation Institute of Indiana, is one of about 20 in the nation that focuses on neuro-cognitive functionality and head injury *as well as* P.T., O.T. and Speech/Swallowing therapy. They spend a lot of time with TBI's and brain bleed patients, working on executive function and emotional issues. That's why I'm so insistent he go; if it were merely physical therapy I wouldn't be nearly as excited about this facility.
Yes, I think he's not fully aware of how serious his condition is and that it will be a long process of working hard during rehabilitation to regain functionality. He is obsessively focused on one thing (being at home for Christmas) and that, I'm told, is one of the symptoms of this kind of bleed. I hope he will join this community too. I think it will be a great resource for both of us...
Neilia, I too don't know what to say to all of that except that you are in my prayers. I have thought about it for a while now and it seems that you are in a very tough situation. Of course you love your husband and want nothing more than to have him come home and everything be back to normal. But, he has a ways to go before he is ready. It is so heart breaking to hear the struggles that some have had with a rupture. Please hang in there, recovery takes time. I pray that something that is said by either you or a nurse or one of his doctors that breaks through to him and he realizes that he needs to go to rehab for a while and that none of this is your fault.
I am in Indianapolis. In 2011, I had a SAH, and hemmoragic stroke. My family was told that I wouldn't be able to live on my own ever again. I had all of the issues your husband has...who the hell was charting my future? I called my friends to bring me smokes....even though I quit years before. Asked them to bring beer, asked them to meet me at wal mart....even though there wasnt one close. My brain wasn't right. But, guess what? I got better!
Today I am back to work, back to my apartment, back to functioning. I know I am very lucky..but it is possible. My phone is 317-■■■■■■■■. If I can help you, please call.