Need Support

iVillage Member
Registered: 06-10-2007
Need Support
Sun, 10-10-2010 - 1:30am

A week ago today, my 33yr old husband suffered a stroke. It was very severe, and a very rare stroke. It damaged his brain stem, and basically he is paralyzed from the nose down. All he can communicate with is blinking. His mental status is fully there, and we have worked out blinking yes and no to questions. Its called Locked-In syndrome. HE is on a ventilator because he cant swallow and his saliva ends up in his lungs.

THe stroke was sudden and acute and couldnt be help. I had found him lying unconciuos on the floor 3hrs after he got up to go to the bathroom because his stomache was upset. I feel so guilty that I fell back asleep. They didnt know it was a stroke until 3 days in the hospital. The CT's were coming up normal. The first neurologist we saw said to consider hospice (when you go to die) and discuss it with DH because his quality of life will be poor. And most patients with this conditions die within 4 months from things like pneumonia because they are bed ridded. So I hysterically talked with my husband, who cried everytime i talked about it. (this he can do). I had to tell him he would never walk or talk again. Finally when we talked he didnt want hospice. I had come to terms, but was ready to lose my husband. And now he didnt want to give up. I was soo worried that I would prolong the enevitable.

Then the next day the general doctor approached me because he found out we were considering hospice. He told me not to give up on my husband. That from knowing hime for a week, he could tell DH didnt want to give up. He also said people like my DH can get some help with therapies and even computers to read his eyes. So I confronted the Neurologist and he agreed and said that it was true. So I asked for a second opinion. Another nuerologist came today to see my DH, and says with therapies he could regain some movement, such as speech. Walking is never going to happen. He also said that part of the stroke area is dead brain, and part is only injured. We have no way of knowing what. He said to give him a year, and during that time we could see how much therapies help him.

So I need some support, and dont know where to turn. I am not sure how this will pan out. I am worried about my husband, money, insurance, and possibly having to care for my DH for the rest of his life. I love him to death, but this is not how I pictured my like at 28yrs old. Did I mention I have a 2yr old DD, and DH and I were trying for more. I just see so many changes ahead, and dreams coming to an end. I want to see light at the end of the tunnel. Can you guys offer any advice or simial experiences?

BTW MIL thinks this is my fault, and that I am not doing enough for my DH. She says I am too worried about money and insurance to care. She told me I dont care about him like she loves her husband. And said I put my daughter before DH. UGH! She thinks I should have him transferred elsewhere to better hospitals. But Ive talked with several drs. and the care they are providing right now is all that any hospital can do. When he goes to rehab then he will get therapy. There is no surgery or magic pill that will help.


Mommy to Lilly Mae

iVillage Member
Registered: 11-04-1999
Sun, 10-10-2010 - 5:25am


iVillage Member
Registered: 03-20-2009
Sun, 10-10-2010 - 4:28pm

Hi and welcome to the board,

Josie said, about Christopher Reeve. His life after his accident was a wonderful example although it was hard on his family..