still living but so,so differnt

by Bev
(Central Nebraska)

My husband of 24 years suffered a massive brain injury due to a brain bleed 18 months ago. As a result he lives in a nursing home where he is no longer able to care for himself. His memory is so diminished that conversations are very limited. We spend one hour together a week due to his condition. How does one grieve after a loss like this? Yes, he is still alive but the quality of his life is greatly diminished. He is only 54 years old and I am 53. We have two college age kids who have moved on in their lives. I cry probably 3 times a week when I remember our past life.

There is no moving forward when a spouse is still living, yet our lives are forever changed. He will never live at home again. For all intents and purposes I am a widow. Anyone out there in a similar situation who isn't in their retirement years? I love my husband dearly and miss the wonderful life we had before this happened. Since he is still living people think I have not suffered a loss.

Comments for still living but so,so differnt

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Sep 22, 2012
In a similar Position
by: A sad wife

My husband had a brain aneurysm in 2004 at 47. I, like you, had to learn to deal with so much loss. He is here but his level of function is that of a child. I have to do everything now. That I can bear, but I miss the man I married so much! I love this man too but 8 years later my heart aches with longing for him. I also wonder how I will go on like this another 20 years or so. I am not even 50 and I feel like all the good times are behind me. Take comfort in knowing that you are not alone. Enjoy the ok days. Try to get through the bad ones as best you can. Stay busy. Be kind to yourself.

Feb 10, 2011
me too
by: Jackie

Hi Bev. My Husband had a traumatic brain injury in Oct. He was out into a coma to help his brain heal. He never woke up. I was at his side everyday. The doctors said I needed to make a choice. I did as my husband wanted me to, I had his life support turned off. Yes, I know how it is to grieve twice. I grieved while my husband was in the coma, hoping he would come back to me, he never did. When he died I started to grieve again.

My husband will be gone 4 months on Valentines. I don't know how to handle this, but I must. We are all in this together. Be strong, and know you are not alone. Come back to this site often. I come everyday, but I don't respond everyday. Take care of yourself.

Feb 09, 2011
Hope this helps
by: Anonymous

I just lost my husband which had a massive stoke 6 years ago. He could not speak and one side of his body would not move. I also had to put him in a nursing home which was a terrible experience, we had 4 children which also moved on with there life I went 5 days a week to see him and learned many lessons in that time. I am 51 years old and everyone wanted me to move on that is easier said then done. I loved my husband with all my heart and stayed with him as I told him I would till his last breathe. I believe that going to see your husband and loving him the best way you know how is good for both of you. My husband is no longer with me I lost him 3 weeks ago but I have a wonderful peace knowing that I stuck by him and your so so days will get better and the love you have for your husband will hold you there until the end. What always made me feel better was that I took my vows to my heart till the end. God will be with you and your husband until he knows when to take him. He will not put anything on you that you can not take care of. Stay strong for both of you

Feb 09, 2011
Always here for you.....
by: HH


I wrote a comment For: still living but so different. I had to really edit most of it. Only 3000 characters allowed. Please ask me anything you want concerning brain injury. Also there is a great group that I went to Called Brain injury of America. I think that they are nation wide. I went to once a month meetings with hubby and could have gone without as well. It is for all caregivers as well as those suffering from a brain injury. I wish you well and some peace to your life, I know how hard it is. Write me anytime I will always be here to talk...

Feb 09, 2011
Living with brain injury :(...
by: HH

My husband had a brain aneurysm Sept 08. He went in VCU to clip the vessel. I had read so many stories about how people had this procedure done and were in church two weeks later that it did NOT occur to me that anything other than that would happen. He however knew that he may not come back the same I scoffed it off as nerves.
Little did I know, or admit.

The surgery was said to have been complicated. I never found out exactly what happened. I know that it was supposed to be 5 hours and was 13 hours. .

I will never really know what actually happened.
If he had the stroke during or after surgery as they told me.

He was unable to eat at first had to relearn how to swallow talk oh so long ago yet yesterday.

They released him from the hospital too soon Oct 3rd 2008 only 2 months after the surgery and sent him home.

So he did improve but by the 6th month, I was told that this is probably the way that it is.
I cried My God I cried yet I could not let him see me. He would get so upset seeing me cry or upset. All the emotions as his caregiver from that day till the day that he died 12/06/09 I had to keep to myself. Even when my father died Jan 09 I had to keep the grieving quiet and private so that I did not upset my husband.

The stroke had indeed changed him he was more impulsive, less patient and rather child like in his thinking. Somethings did not occur emotionally at all to him yet other times he cried daily and could not explain why.

I had to go to work and prayed that he would be safe while I was gone. I would call him every day at 11 to make sure. An older wiser woman told me to stop calling him, Said that it would not help his self esteem for me to treat him like a baby and let him be a man. It was hard so very hard and there were days when I rushed home early haven gotten no answer. Pretty much terrified.

So I guess My point is that I did grief twice. Once missing the husband that I had missing him a great deal. Still somehow the protective side of me took over and I was protective to the point of being a nag I suppose But I was so scared.

Many of us were caregivers and can relate to grieving twice. You are indeed grieving and I wish that I could help you more...For now all I can do is tell you my story of brain injury. How he changed and how it affected my life. I know how much you miss your husband, Who he was and how hard it is to do it all be responsible for it all it takes a great deal of courage.

Feb 09, 2011
My Sweet Mother
by: TrishJ

Bev~I lost my husband to heart disease almost three months ago. I'm grieving for him but I'm also grieving for my mother who is gradually approaching end stage dementia. She is just a shell of the person she used to be. She lives with my sister and I so she still knows who we are on a daily basis but she is beginning to question who her grandchildren are when they visit. She can remember things that happened 25 years ago but can't remember that she ate breakfast 5 minutes after she's done eating. I miss the wonderful long conversations we used to have. She had such a witty sense of humor. Nothing makes her laugh anymore. She sits with a blank stare on her face most of the day. She was watching the Spanish channel yesterday (she doesn't understand Spanish) ~ I don't think she can even concentrate on a TV program any longer.
I can't even pretend to imagine what you are going through. I know toward the end of my husband's 3 year illness I use to hope that it would all be over~then feel guilty for having those feelings. I miss him so much but the person he used to be was long gone before his heart stopped beating.

I will pray for you Bev. Your friends and family have to understand what you are gong through. It's so difficult. Treat yourself to a spa day if you can or go to a movie with a good friend. You have to take care of yourself. Great advice heh? but so easy to forget about yourself in the big picture. Come to this site often and write your feelings. There are some awesome people here who want to help. It helps so much to vent.
Hugs and blessings to you.

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