Janine,

(((hugs))) to you sweetie. I wish I could offer you more but as a survivor with one half of my body that works and being here in cyber space I can't do more. Wish I could.

All the mixed emotions you are feeling right now are quite normal as you are only 2 weeks into this. I'm sure the caregivers here can jump in and offer you perhaps more than I can.

I just want you to know that your frustrations are heard. May I suggest making an appointment with the doc to be able to sit down face to face and get your questions answered.

Three years ago, after I was slammed by stroke, my daughter (who was 12 at the time) got herself up in the doctor's face and demanded answers as to wgat was going on with me. Of course she did not relay this to me until much later. At the time, she was not given a very good prognosis. When they refer to it as the practice of medicine they aren't joking. There is so much not yet known about the brain in spite of the advances of modern medicine. A lot of recovery depends on the survivor's outlook and drive to improve as well. Yep Larry is sleeping a lot right now and this is normal as the brain begins to heal. If you haven't yet read it, in the Classic Advice and Postings on the message board, there is "A Letter From Your Brain". Please read it - it may provide you with further insight.

Don't feel guilty either about taking some time for yourself and puttering around the house. You need to release your frustrations rather than bottle them up. Hope that blogging is also a good release for you as well. You might too want to see if there is a "live" in person support group you can join.

Hang in there dear, it will get better. (You probably want to scream each time you read these words but it is true)

Janine,

I remember that about the 3rd or 4th week of Gary's stay at the rehab hospital I questioned why he was sleeping so much and one nurse (the one who got fired for speaking out on his behalf) told me that the head nurse had asked the Dr. to prescribe Ativan (not sure if that's correct spelling), which she told me was a really strong drug just to keep him sleeping so they wouldn't have to deal with him. I went to the Dr. and told her to get him off that sh***t NOW! I also questioned why they had him on an anti-seizure med when he had never had seizures in his life, other than the one they insisted he had right before he had the stroke in a hospital room.....but that was also the hospital that didn't know how to deal with a stroke and left him lay for hours doing nothing for the stroke!!

It's not easy to stay on top of everything going on every single day, and if it weren't for a few good nurses (both of whom got fired) while Gary was at rehab, he wouldn't have done well at all because I was running on overload and ended up spending a night in ICU myself from the stress. I learned to slow down the pace a bit after that and not try to worry so much. I had to leave it in God's hands as my shoulders couldn't carry the load. When it came to the criticism from others about me not doing enough, I learned to put out my hand and say "talk to the hand" because I'm not in the mood for it. It's always easier to be on the outside criticizing than it is to be the one doing everything; and until they've walked a mile in your shoes, they have no right to complain.

You hang in there, and remember you're doing what you do out of love and nobody has a right to judge that!

Sarah

janine, you have gotten some good advice from the above women. god knows this isn't easy for you. no one should criticize you and what you are trying to handle. you have been thrown into something you didn't ask for. you can get through this but you need to take care of yourself too or you will be no good to larry. i would definitely make an appt to sit down with the doctor so he can explain what is going on, you both deserve that much. learn all you can about strokes and have paper and pen with you when talking to the doctor. others here have suggested even putting a tablet as his bedside, so the nurses and doctors can write things down to let you know what happened during the days you are unable to be with him. most nurses are willing to do this i think. it will get better, just hang in there. i send you (((hugs ))) and best wishes. we are always here for you.

Since I don't have Jean's long perspective, or the wisdom of some of my betters who have already walked this road, I realize the my opinions right now may not be reasonable, or valid, or even well-thought-out. To me, the mark of an open mind is someone who is willing to give fair hearing to an opinion that's not their own, and listen to it, and learn something from it - and that's what I hope to do by coming here.

I'm sure that if Larry pulls through this and I can look back 5 years or so from now and see that he's enjoying his life I will feel a lot different, and will be sorry about what I said. But right now, it feels right. Larry would not have wanted this for anything and I KNOW would rather have died on the bathroom floor on 4/22 than be going through this. I have to say I feel the same - I would rather he had died, and if it happened to me I would ask for death rather than be a burden to everyone I love. Maybe my perspective will change, but right now that's the honest opinion from my most secret heart (which I woudl not share with anyone else!), and I won't deny that feeling.

I'll wait and see what happens if/when he starts getting better. Maybe that will change things. Also, if I could lose some of the self-pitty (ha ha - I typed "petty" by mistake, and kind of liked it that way!) that would be good too.

Thanks to all who are helping me work through this. It's HARD - and amazing to me that we are totally under the radar of most people (including me prior to 4/22). People like us are everywhere, and most do not take the time to ask or notice. Your world does start to get bigger when stroke is part of it...suddenly it's not just all about YOU anymore, or your new car, or your new whatever. I definitely needed that lesson!

Janine:

I can tell you ne thing from survivor point of view, yes I did wish I had died that day than go on living as a disabled person, but I am also glad I survivd. I have had so much more fun in life post stroke that at this point in my life I am glad stroke happened I just lost my left hand for great marriage and chace to be a mom who is really there and enjoying every minute of it. but for me to come to this point my husband now but my caregiver during those initial months played huge part. we both togeher work hard to be at this point in my life. I think right now you are grieving for your loss, but you will need to get stronger for both of you, if tht means taking anitdepression pills to get through it then maybe you should look into it. I still remember asking him again and again how come you still love me and his simpl answer was if this has hapened to him or our son would we loved him less. I just thank my stars I married the guy with such immense strength within him. I will just tell you one thing even it feels like rotton today, you will feel differently few years down the road, but you must keep very positive & loving attitude for your husband's sake. we all are given two choices in a life, and why should we choose to be negative for any situation in life.

lots of hugs

Asha

Janine,

Your wrote:

"Death is really a blessing compared to a severe stroke. At least with death there is a clean ending, and the healing process can start. With stroke there is no such ending - it just goes on and on, with an endless round of visits to the hospital, insurance issues, paperwork, and so forth. I feel like I have no life right now - and I am only 2 weeks into it! How am I going to feel in 6 months? A year? 5 years?? I can't even think about that - right now I am barely getting through the days, let alone thinking about any sort of future."

About a week before my husband's stroke a friend of our cousin lost her husband. She told my cousin how jealous she was of me because I still had my husband. At the time I said that I was rather jealous of her because she both of us had lost our husbands but she was able to go through the grieving proces and get on with her life. Sometimes I still feel that way. I love my husband very much but he is not the same person he was. I still miss my old friend. Until I have to go through his death I will never really know if that is harder than the loss that I have all ready had. I might find that I really have no clue what real loss is. Still those thoughts and feelings are ones that still surface and someone telling me I shouldn't think that way isn't going to make them go away.

After the strokes, both my husband and I agreed that we would never put him through all the hospital ordeal again. At age 76 he has had a good life and we have the belief and faith that there is an eternal life beyond death that is better than this one. He would rather have only a few good days on this earth and many filled with pain and being kept alive in a hospital. I feel the same for myself. I never want to have all those tubes stuck in me.

That does NOT mean we do not value his life right now. I am thankful for the time I have had with him. I do not want to imagine what it would be like to not have him. I live with the fear that this may be our last one. If this sounds like a contradiction, well what can I say, that is just the way this mind works. I don't think we should have to apologize about for our honest feelings either to ourselves or to others.

Ruth

Ruth, what you said is exactly how I feel. It's true - until the time comes when Larry dies, I really will not know how that feels, or if it's better to have him here as a shell of who he used to be or to just know that he's gone. We are both atheists, so we don't have faith that there's a "better place" somewhere - we belive that this life is all there is, but like your husband (and you, and me) Larry has lived a good life and I know that he does not want to be in the place that he is now. It's weird, because it's not death but it's not really life either. I continue to hope that he will improve and that the man I love so much will still be there. In some ways he is - his sense of humor still comes out sometimes, and when I look into his eyes I still see him in there (somewhere). But I think that in all honesty both of us with he had died on April 22nd rather than go through this. Since that's not what happened I will do whatever I can to care for him, make sure he's comfortable and get him home, but the reality is that this is not the life that he wanted.

Thank you for not making me feel guilty about these feelings. It sounds very strange to wish your husband had died, and believe me when I say that I love Larry to the depths of my being and would have died myself rather than have this happen. These are not thoughts that I feel comfortable expressing to most people, so thanks for letting me tell the truth. Maybe I will feel different in the future, but right now this is where I am.

-Janine

Janine, I hope this doesn't sound stupid but I believe the life after a severe stroke or other major trauma shows the metal of the person and also their caregiver. I know from personal experience that although people don't always say so we have a lot of peope watching what we do, how we manage, how we react to situations and sometimes our actions when we are under stress scream louder than our words ever do. It is a mark of character how we react when the going gets tough.

Larry needs you and you still need him so you hang in there. You will find as his stroke deficits slowly diminish that this life has a lot of compensations. It is an opportunity to become gentle, to acquire that "wisdon born of pain". And there is a closeness that is only there between two people who are struggling to survive together. I can't explain it, you have to expereince it, which you will when Larry comes home and you strive to make a new life together.

Whatever we think of as the "hereafter" it is the life we've lived that will be remembered. All the wealth and recognition is as dust if the person cannot be remebered as one who endevoured to do their best. And believe me, stroke survivors who struggle with their deficits and triumph are bigger heros to me than any mere sportsman or movie star. And their caregivers should be right beside them in some Battler's Hall of Fame.

(((Hugs))) from Sue.