Spouse of an Aneurysm Patient

[gpalatin]

My name is Jan. My husband, Greg, had a brain annie a year and a half ago.
He hemoraged into his frontal lobes after surgery. It has been hard going, but it is getting better. I have not been able to find any source that helps the spouse of someone who has gone thru this. I understand it is very hard for the individual who has had the rupture, but nobody understand the partner that is left to deal with everyday life: family, finances, insurance,etc. and the demands that use to be shared by 2 are now on the shoulders of one.
His family will no longer speak to me, friends have been lost and his co-workers and boss come to me with his issues instead of him. My entire life now revolves around him. I love him with all my heart, but some days it becomes so overwhelming.

[kookykat]

Hi, Jan.

My name is Mikki, and I'm also a caregiver for a stroke survivor. What you're going through is what I've also been through - losing friends, feeling overwhelmed. In our case, there was no family (meaning relatives) to worry about.

The good news is, you've made it this far. The bad news is, you're probably LONG overdue for a Jan Day - even just a *part* of a day - might I suggest doing something FUN just for you at least once a week? It doesn't matter if it's going to a movie, going to the library, going for a walk in one of your favorite places, meeting someone for a cup of coffee, going for a short drive...be selfish and do something just for you, please.

His family won't talk to you? Then they are NOT his family. They are his relatives. That's a whole different thing. Your family and his are the people who've stuck by you!!! The rest of 'em? Screw them. Seriously. If it makes them too uncomfortable to be around him, if their idea of love is predicated on whether he's perfect physically and mentally, screw them. I say this as someone who has been down that road with my own rellies and friends. I've lost nearly all of them in the last 2-1/2 years. Know what? Other people have been put into both of our lives who DO care and who DO want to get involved and who DO uplift and support us (ah, the brassieres of our lives...sorry, I'm really tired and feeling silly).

I've blathered on a bit and will say good night. Just know you're not alone. Private message me anytime, k?

Mikki (kookykat) - Sole caregiver to Sharon, left PCA berry aneurysm rupture 03/31/04 with midline shift, still improving daily!!!

[trekker]

Hi Jan.,

My husband had his bleed 22 years ago...the dark ages of brain surgery. The bleed was subdural in the right temporal lobe. They left him lying on the table in the ER, waiting for him to die. But my hubby is a toughy...the bleed clotted off on it's own and they were forced to go in to see what was what. MRI's didn't exist at this time, and CT's were a done on a share basis with either one hospital having a machine or a traveling one that made the run to local hospitals. This was also before microsurgery. They went in and evacuated the clot and some of the blood, cauterized the artery, put in a flap and used metal clips so to this day we cannot do MRI's. He has been left a total care quad with seizures and blood pressure problems among other things. He also had kidney cancer in 1993 and his post surgical care was botched. As a result he could no longer eat or talk or move his right arm. So now he also has a feeding tube. He is totally incontinent too. He is pretty stable right now, and we seem to have pretty good seizure control lately so things could be worse. He communicates with grunts, groans and eye blinks. I am constantly amazed at his courage and attitude. He has been thru so much and his life is so limited but he bears it all very well. I have always loved him but my admiration for him has grown over the years to a high level. He is a hero to us (as is anybody who goes thru this kind of injury/disability).

Even with all of this the hardest thing I have to deal with is the insurance and the paperwork. Some of the medical "professionals" are also going to drive me crazy. What a waste of medical school for some of them. I've learned more on forums like this than I ever learned from his neurologists or urologists. We have been lucky to get some top quality primary care docs though, and they have saved my sanity more than once.

We live in Massachusetts and they have an independent living program so we are able to get help to come in and care for DH. We both have very small families and even they are spread out so the aides are a real help for me so that I can do the groceries, handle the paperwork, get the car fixed, go to the drugstore etc., etc., etc. I still have to do a lot of his care and often have 18-20 hour days.

I was so glad to find this site, a source of comfort, help and inspiration. I usually hang out on the caregiver and the comic relief forums.

LOL didn't mean to make this into a book but like you when we find someone to share our trials, tribulations and heartache with it just seems to come spilling out. Glad you have found us here. Welcome and stick around, it's worth it.

[Travelingdueo]

I too am going thru what you are... My husband was the sole provider working under contract as a traveling nurse.. when he had a bleed in Jan. and had his anuerysm clipped 5 days later spending 4 weeks in ICU then 4 weeks in rehab.
Since I was away from home,family and friends we made a two day trip to WA from CA so atleast there was family there to help... we stayed with his sister from March to the end of July when we went back to living in our RV.
There really isn't anyone to stay with him - his sister works but on weekends we go over at least I have someone to talk with and someone else can help with watching...
Insurance is a big problem as we had to go to Cobra and its just really $$ plus the medications it just seems like everything is on the third tier which is $60. the highest. I shouldn't complain as there was a med that would of cost over $1200. for 2 weeks . I am trying to see if he can get VA but once already denied but I'm going to try again, last resort will be state assistance but we still have some assets so I have a feeling we won't qualify until I can get rid of a motorcycle and trailer and his 401k and life insurance.. I am just thinking hadn't apply yet.
He finally did get SS disabiltiy but just alot of paper work to apply for everything.
He has long and short term memory loss and I have seen progress actually he did better once he left the rehab hospital and I noticed more since we went to be on our own.
It's very time consuming as I have to really watch him, as he will go out and walk around,or trys to fix something to eat and trys to light the gas stove...
if you want to private message me I can go into more with you
Becky

[Lyn]

Hi Jan

I just posted a response to Greg on another thread. I cant add anything to what the others have written because I am not a carer but an unruptured annie survivor.

Just wanted to pop into this thread and let you know how sorry I am that you are going through all this - there is a ton of truth in the saying that it is harder for the relatives than it is for the patient a lot of the time.

Just hold him close, and thank the lord you still can - I hope the others that answer your post can be of more help to you than me.

Lyn

[gpalatin]

Hi Becky,

It seems you have been into this for 8 months. I am not sure of you hubby's prognosis, but with my husband it was past the 1 year mark before I saw any great progress. He too did better at home than in rehab. We have been fortunate that up till now his employer was supportive. Granted he made the company millions, but still they stuck by. Now he has to start all over again. Which might in the long run would be better for him to work with people who didn't Know him before the brain annie and stroke. I was told by most professionals that he would be functional but not likely to be able to maintain total care for himself. I didn't give up. I found a speech therapist who was willing to push beyond. I also found a family counselor that helps he and I emotionally and also with ADD skills for both of us. I was also told that it can be 2 years before it is known how far he could go, so don't give up yet. He has progressed beyond any of the professionals expectations. He can care for himself completely and has retained his knowledge of his career. His problems with work are that he is so different in his personallity. I have found out thru therapist that your emotional response is in the short term memory. And since they have to re-learn everything, how they respond will be different. Thru this experience I have learned that he was emotionally abused as a child and had become a very surpressed adult. I discovered that I didn't know who he really was. It was frightning at first, but have discovered that I really like him much more now. That is why I don't have the problems with him being different that his co-workers and his parents have with him now. As I look back it has been a blessing to our marriage. I could not have said that a year ago. So hold on. It gets better. As I said to our daughter a year ago, "Next year this will be our normal.

Jan

[gpalatin]

Trekker

Thanks for resonding. I can't believe you would even listen to my whining. You are a person of great character. My problems are minimal compared to yours. Thanks for the wake-up call. My problems are the emotional aftermath of having to change and rethink everything. He can't manage the finances. He can't look around and think on his own to pick-up or finish a project on the house. He still struggles with our daughter on being a father instead of a brother. He has difficulty planning a course of action for his day and completing a task without continued reminding. But he can: take care of his personal needs, do almost any task I ask him, play with his daughter, he can hold me and kiss me and say I love you. He even can do his high level position, but struggles in his new personallity with his boss and co-workers, even so he can complete his work task. I guess that is why I get frustrated. Maybe that is normal. He gives better at the office than at home or maybe he is having issues at work but unable to see them. Self-examination, one of the other issues of the frontal lobe hemorage. But in the whole picture I guess it is not that bad after all.
Jan

[FireflyR7]

;) I am a Ruptured anuerysm survivor! I had a rupture last June & went to the ER 3 times before they listen to me and did the right test. I didn't have my surgeries until Sept. I died on the table because I threw a clot, but they got me back right away. That was to put the stent in, so I had to wait until Oct. to have the coils put in. Mine is next to my left optical artery. My surgeon can't believe I survived the rupture & brain swelling taking so long to get a diagnosis?? But, I am still here!! I have had a long recovery and a long way to go. My NS told me it could take up to 2 years for my brain to absorb the blood since I was not treated right away. I take many meds. & am doing my own rehab. We can't afford to pay for it!! My hubby is an EMT & firefighter & I was a firefighter until this happen so we know a lot about this kind of stuff. There is a very good workbook that I reccomend to patients and care givers!! It is called "THE MILD TRAUMATIC BRAIN INJURY WORKBOOK", It was very helpful to me and family to understand what we are going through!! It can take years for a rupture patient to get better and takes a lot of work! We go through many phases and not any of us are exactly the same!! Please got the workbook!! It is in book stores & on line, my sis got one for me. I have done a lot of research myself, My poor hubby has had to read more S---!! Poor guy! He & my sis have taken very good care of me!! It is a long hard journey, but only time and hard work can help. I know it is very frustrating for our care givers!! :o Try not to get frustrated!!! I will keep your family in my prayers!! Have patience!!! Love Tricia! Let me know if you want to talk more about it!! I am here!! ;)