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thelma313

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I have not started a new thread in a long time. Part of me, just didn't want to get you all down and the other part of me didn't want my mom to feel sad in case she reads this. Today she told me that her heart feels broken and her chest feels tight and I feel the exact same way so I think it won't surprise her to read this. (I love you, Mom!)

It is just tearing me apart to watch my dad suffer now. He didn't get out of bed again today. He just doesn't have the strength. I feel a lot of sadness. Someone mentioned "anticipatory grief" and I think that I am feeling it very intensely now. That said, I also still feel brave and I promised my dad that I would take care of everyone as I know he worries about that.

I guess my mom and my sister and I have to find the strength to accept this reality. My dad has lost so much mobility. He sleeps most of the day and night and cannot remove his bipap except for a couple of minutes while he is transferred from the bed to his wheelchair which doesn't happen every day. His pain is being managed now but it still flares up every few hours. At least he experiences some relief from it.

Through all of this, my dad still expresses so much love. He holds our hands and responds to being kissed on the forehead and having his head stroked.

I just wonder what I can do to manage my heartbreak. I feel like maybe I need to find a therapist or something and I have no idea where to start looking.

I just hope I am not going to depress anyone with this post. I care about you all so much and I am so grateful to have found this forum. Thank you all, my friends!

Rosella
 
Oh, Rosella, hun, (((((((hugs)))))))Wish I could be there to help you through this! Wish I could say it's going to get easier,but I can't.Does your work have medical benefits that cover a therapist?It would probably help to talk about it.I'm crying for you because I know where you are headed. Just keep giving your darling dad all the love you have while you can and support your mom. I can't imagine her pain!
 
I have your family in my thoughts and prayers. I hope you share your heartbreak with us and others, it helps to know you are not suffering alone. Peace be with you. Beverley
 
Hugs to you..this is such a hard time for you! our prayers are w/ you!
 
Colleen, I am a freelance editor but as a member of the Television and Film union, I do have some therapy covered by insurance. I think I will make it my mission tomorrow to try and find one. Thanks for your support. xo

Thanks to you too, Cris and Beverley. Your support is so appreciated.
 
Rosella,

You are so dear and sweet! You and your mom are in my heart. I will hold you close so you can hold your dad even closer. I pray for us all.
 
oooh Rosella, I am so very sorry for you. What you are going threw is one of the hardest things in the world! I could never go back and relive the 9 month battle my mom fought with familiar ALS. It will be 2 years ago at the end of this month. To say that I am heart broken would be the understatement of the century! I miss her everyday and there is no cure for it.

It is so incredibly difficult to be a caregiver and a daughter at the same time. You love them so much, and just knowing they are leaving you soon is debilitating. The anticipatory grief was so overwhelming for me, I could barely function. Looking back now, I only wish that I had been just a little bit more tough, because I allowed certain pieces of myself to shut down, so i wasn't the me I should have been for my Mom.
What helped me a little was trying to acknowledge the horrible pain she was facing and yet how hard she tried to hide it from us. I was blown away by her strength and courage when i was so sad and scared. I was so proud of her! I tried to think of that and just give her all the love I could. I thought of what a relief heaven would be for her, with no more pain. I would spend hours just rubbing her feet and talking. Looking into her eyes and sending her all the love that was inside me...there was something so powerful about that, i can't really describe it....I can still feel the love and connection between us when i think of looking in her eyes!
It seems to me that you have that by stroking his head and giving him kisses! It means so much...and i wish you all the love in the world to share between you and your father, and your whole family! Soak it up and remember that he will never leave you!
I'm sure it's very hard to share and express everything thats going on inside you...and I'm not sure if you would be comfortable with it...but I chose to talk to my mom about how I didn't think i could handle living without her..and i told her the things that scared me most. Sometimes I think it helped her too...but again. I dont know if you would be uncomfortable with that, or it would be too depressing!
But yeah...definitely talkin to a psychologist is a great idea!
I hope my writing this was ok...this is only my second post...and I just joined today!
I hope this wasn't more depressing! God bless you! you are in my thoughts and my prayers and I don't even really know you! It's a crazy life!
<3
 
CJ, thank you so much for the prayers.

Lorraine, I am so sorry for the loss of your mom. I can so relate to what you wrote about that feeling of love and connection by just looking into the eyes. I feel that every time. I am also so awed by my dad's courage and his protective nature. Even though he can't talk or walk or even sit up for that matter, there is still this ever protective fatherly feeling I get from him. I know he wants nothing more than to make sure we, his girls, are okay. Thank you so much for sharing your experience with me, it means so much and it sure is crazy how connected we can be, never having met but sharing this intense journey.
 
Rosella, I wish I could help the pain go away, but I know I can't. You and your mom and sister have to walk through this. But your dad is blessed to have you all there. I hope there is some comfort in that. You are giving him the greatest gift of all ... walking on this journey with him, loving and supporting him.

I hope you find some help. Please keep reaching out, and let this family help where we can.
 
Dear sweet thelma313, I am sending you and mom and big compassionate hug....I am thankful that right now my father is not that bad, and I am dreading the time that he will be, but for now I am just trying to not think about it so much. As you may already know, I lost my 42 year old husband suddenly 2 years ago. Heart attack. Talking to him one minute, the next he is gone. When my dad got his diagnosed of ALS it too was a horrible day, but the following day he was still here...(and so is yours) and that is a blessing! Grief is grief....you are already grieving for what your dads life is already missing. Grieving for a life that has been changed forever, without permission from him or anyone. Grief in the worry that he is worried about how all of you are taking it...grief in watching him suffer, along with your mom. There are ALS support groups out there. The local ALS Assoc. should have a list of them. I went to a grief support class that was founded by our local hospital after my husband died. We met every week for 8 weeks. It was very organized and helped me work out a lot of issues. It was also free. Maybe you and mom could go together? I know that tight feeling in your chest....I have had it since my dads diagnosed....good news I have lost 17lbs (needed to!) Anyway, one thing they taught us in the grief support group was to "lean into your grief" and not to try and bury it. Deal with it as it comes. Have a good howling from the depths of your soul cry. It will help with that what I call "impending doom" feeling. If there is anything I can do for you hun, just let me know!
Lorainne171 ***** Welcome to our forum family! So sorry about the loss of your mother! Your post was great!
Hugs,
Kari
 
Rosella, I'm so sorry for what you are going through. I think seeing a therapist would help. It helps to just keep talking and getting it all out. My thoughts are with you and we are all here to help you get through this.
 
I love that! You, "his girls," your mom and sister! You are his jewels! It makes me feel like your famous and so special...because you are so loved and valued by someone who is so wonderful to you! Did that make sense? hahaha You and your family have such a special story, just like mine.
I almost hate that it has been 2 years already since she passed because the more time that passes, the more i feel like people expect me to move on. I don't want to move on and be over grieving her, because she is SOOO worth being remembered everyday and i want to relish in her! I don't want it to fade. But i have to say...i talk about her so much, she never will. She will live on in this world, through me and my family.

I am Christian and it has been such a huge blessing believing that I KNOW she is in heaven. I think that death is so innately wrong to us because we are never meant to die. We are only meant to move on, and continuing living in heaven, forever! I have incredible daydreams of what it must have been like for her to make it to the pearly gates...my two grandmothers meeting her, and our dog Lukey giving her wet kisses...I mean the joy I feel for her (when i allow myself to not be selfish over my own grief) is immense!

I am so relieved to know that reading my story was somewhat of a blessing to you! God only knows the extents of what you are going through and the heartache you feel...Im thrilled that our connection gave you some solace...because I know it gave me some. Love and prayers and hugs! Lorraine
 
Dear Sweet Rosella,

As I read you post, I am heartbroken for you. I wish I had the words to console you, but as Beth said you have to walk through this yourself. You are not alone, although I'm sure you must feel that at times; you know you have not only your Mom, sister & extended family, but also all of your family here on the forum.

I wish I could take you in my arms & tell you everything will be OK, but you & I know differently. But I can tell you that I know you, and you will manage the heartbreak & the pain you are going through right now. You have already begun by just sharing with us what you are feeling.

You are a strong and vital woman; a force to be reckoned with and there is nothing you can't do. And I suspect you learned this from your Dad. You are your father's daughter!

Love to you & Alida,
Marianne
 
Beth, yes there is much comfort in knowing that my dad is surrounded by love. My mom is truly amazing. She is such an attentive and skilled caregiver to him and he is so grateful. He thanks her daily in whatever way he can. And I must thank you for your impeccable flair with words and wisdom. I get something so precious from every single post you have ever written.

Kari, a profound thank you for your invaluable advice. I am sorry about your husband. That is such a terrible blow. That is how we lost my grandfather, my dad's father. He was perfectly alive, energetic, boisterous, cheerful and full of joy and then one day he went to sleep and he had a massive heart attack and that was that. My dad never got to say good-bye to his dad. I am grateful that I have the opportunity to tell my dad everything I need to say. I am grateful that my dad has the opportunity to share his love with us the way he is. I encourage you to make wonderful memories with your dad and if you ever need to vent, you know where to find me.

Strikeout, thank you. I will definitely look into it. I am so touched by your support. Thanks. Right back at you!

Lorraine, thanks again. I totally know what you mean by hating that "it has been 2 years already since she passed," but your mom's spirit lives on through you. You are her legacy and every family's story is so unique. I am happy to hear that you talk about her and keep her memory alive. You are also my most pleasant surprise tonight. Welcome.

Marianne, how can I ever thank you enough for what you have shared with me already. You are truly an agent of goodness and love. I am indeed my father's daughter qualities, flaws, quirks, fiery personality and all!

Love you guys! xo
 
Rosella,

Your introspection as a daughter to a dad that has ALS is enlightening to me. Although I'm alleged to have PLS (I think its just some undigested beef), I seem to have a condition that is progressive in nature that if not stopped, will possibly debilitate me to some degree. Your post makes me wonder how my daughters may feel should my diagnosis and/or condition change similarly.

It would break my heart to see my daughters despondent over my condition.

Anyway, I hope you are able to speak with someone that can help you through this tough time. We're all pulling for you!
 
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