The Thrill is Gone

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One of the many problems we have. For so many of us the desire is there but the ability is not. We tend to simply enjoy the togetherness we have and the great and fond memories of the past.
 
this breaks my heart. I love that you write her love notes, she will treasure them forever. I agree it is so hard to be both wife/lover and caregiver. I lost all interest in sex too, but always made sure we held hands and touched and kissed. I admit, if he wanted sex I gave it to him, but it was scary because of his frail body, and difficult logistically, and I really had no desire thanks to my exhaustion and meds I was on.

I hate this crappy disease and what it does to good people
 
Barbie thank you for your response. My wife is scared to death that even hugs might collapse a lung. I have gone downhill but I still have capabilities. I just have to accept this new part of my life als has taken from me. It's relentless and won't stop taking pieces of our lives until we draw our last breath. Thanks to everyone else for their comments. I love my wife with every fiber of my being. My heart still pounds when I hear her car pull in from work. I could literally just watch her all day. Any touch from her still gives me goosebumps. I love her so much.

Vince
 
She loves you too, Vince. I know how she feels, been there done that too. And I didn't like how it made me feel anymore than she does I'm sure. Like others have said...it was for me, extremely hard to be all...especially caregiver...and still do 'husbandly' things. It got to where I couldn't...didn't 'seem', 'right'. Looking back now...after hearing your side...I was wrong. And I should have done more. I didn't realize how it must have seemed from the other side. I didn't realize how much it was needed, even though she told me often how much she missed it...not just sex, but just holding her and snuggling up against her....spooning and such, like we did before ALS. I wish I had given more. I wish I had the chance to do over. I wish your PALS would read this, and rethink it a little. I know its hard.(no pun) It's hard for everyone. I hate ALS Vince. I wish you didn't have to do it this way...wish no one did. One day, I think there will be a bonus for us that regular folks aren't entitled to! Keep your head up and keep letting her know you love her and need her...maybe a snuggle will come your way.

tc
 
Vince, i just wanted to say how sorry I am. Your post made me think a lot. I am glad that you both know how much you are loved by the other.

I hate that we all have to lose so much with this disease. The hurt that a CALS feel inside can sometimes be so exhausting. A lot of good replies on this thread. ALS changes us all but it can't wipe our true love.

My thoughts are with you and your wife Vince.
 
Wow Vince what a man you are.

If you are writing things like your last post to her, she is going to have the most amazing memories of you and you can hold that proudly in your heart now.

This monster is relentless, but you are able to show the depth of the human spirit in spite of the monster.
 
Vince, I just wanted to thank you for this very emotional and heartfelt thread. I had two days of driving for work and thought a lot about your post. Sorry for the long post but had to share and make up for lost time.

I can only speak for myself, but I feel compelled to post my thoughts. I have been reading posts the past few weeks but have been unable to bring myself to post. I am holding on the best I can and doing my very best to make sure Steve is well taken care of. Its both mentally and physically exhausting. We both have daily losses and together we share them. This monster changes us all.

I love Steve with all my heart and that will never change. Our sexual intimacy has changed. The pain of losing so much of what we had takes it's toll. I miss Steve and he's right here where he's always been. I miss his strength, laying my head on his lap while he stroked my hair, the surprise lunches he would make me and the incredible support he gave me.

I hate watching the losses and struggles he has, each and every day. I have slowly built a wall around my emotions and there is so very little left of me... right now. The losses have been so very hard for both of us. I just can't be sexually aroused when I worry about his breathing, exhaustion and doing my best to insure his health.

I guess, what I am trying to say is that I understand how CALS have a hard time with intimacy. I also understand, how the PALS must feel... to lose the love you held so tight in your hand. The love you two share... is so very amazing. Your previous posts are a testament to the love you share. You told us all, a wonderful love story. It's so very sad how this monster takes so much from us all. I so wish it could be different and I am sure your wife feels he same.

The letters are something she will always cherish and I am sure it means so much to her. I found something Steve wrote that was meant to be found later down the road. I will have his words forever. I will know how much he loves me and that's something ALS cannot take from us. Know you are loved and don't ever doubt that. The monster has built walls around us. Inside those walls is love that the monster cannot touch. The posts from everyone on this thread, have made that very clear.

There is a song, that I have loved all my life and never really understood...until now. Its called " After the Thrill is Gone''. Its a Eagles song that never, real well known. I have played it several times, since seeing the title of your thread, Vince.
 
Thank you for your honesty Scared. I ache all the way to my bones knowing I can't hold, hug, stroke, waltz, pick her up by her waist and spin her around. I only have my words now and those few times I get to stare into her eyes and reach her soul so she knows the depth of my love for her. The only thing I have asked of her is that if she is with me when I die, that she would climb in the bed with me, rest my head on her heart and cradle me. I think that's what texastc did for Tracy. I know I will likely be unconscious when the time comes but my spirit will feel her and she will feel my spirit go through her as I leave this earth.

Vince
 
Vince, I am sure she will do just that. That's all I want to do. Lay with him and just forget the world!
 
Vince I hope she can prepare herself to see the beauty in connection at death.

I have always been so grateful that I could have Chris here at home to die because it was a very intimate connection - I used a lot of candles and music to create ambiance and kept his palliative meds tuned to his needs. Just us, just the quiet time to die in peace.

It has done a lot for my journey afterwards, to have both that last time with him, and that time alone with his body immediately after death. I didn't let anyone know he had passed for about 4 hours. That gave me that last private time with 'him', and to centre myself and let people wake up and start their day before being told.
 
You are right Vince, that is what I did...and she had been mostly unconscious for a couple of days...but when the time came, her eyes fluttered open for a few seconds...and we looked at one another one last time for a few seconds. Now I know, she had mustered every last bit of strength for those few seconds. I grabbed her up and held her and whispered in her ear. I will hold that memory til I die I think. Wouldn't trade it for anything, other than to have her back for a moment.
 
For us Vince, if I hugged steve, he couldnt breathe. He couldnt stand the pressure of the hug on his shoulders and body. It was hard. He couldnt hug me for a year before he died. It absolutely crushed me. I couldnt snuggle with him because he wasnt comfortable. It was very hard.
 
Vince, reading all these posts brought back memories of my man. I would like you to know that long after you have been freed of this monster, your lucky wife will remember your love that you had for her.it will continue to make her feel special and warm.
I have only recently just lost my man. It puts a smile on my face when I remember our last intimate moment together. We were trying to learn how to use a new eye gaze board. I could read my husbands eyes easily,but my son couldn't,thank heavens. As my man was trying to proposition me..." I would like to take you to bed.....now!" With a smile on his face when I worked out what he was indicating. He could not move, talk,Or breathe independently but he still found me attractive enough to say that. Of course we had long stopped sleeping together. It was impossible to put pressure on his chest or even hug him. I missed our closeness so very much. Even as he slipped away from us , I couldn't hug him as he was so fragile. I will always envy those who could gather their loved ones up in their arms to say goodbye. What I think is so important is that you still let your darling know that she is loved. You are the one, Vince,who makes her feel special,so keep up with those love notes as long as you can,and keep propositioning her. It makes a woman feel good,even if they say no!
 
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