need you all

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LizT

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Aug 8, 2010
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1,547
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Lost a loved one
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Beaver Dam
Im sort of having an emotional breakdown right now. Im sure some of you have seen my most recent posts regarding my PALS and the fact that he seems to be giving up.
Im having a very hard time dealing with it all. I knew coming into this situation that this time would eventually come- but to be honest, i guess i really havent accepted his fate. i just refuse to because it hurts me to no end.
Ray is the best person to come into my life for many reasons. i dont know how to prepare myself for all of this. everyone says to just cherish the time that we have- and i do that on a daily basis. but it doesnt make it any easier. i have so much pain in me and dont know where to go with it.

i apologize for this pity-party for one. and i also apologize if this made anyone feel bad. i know some dont like to hear how bad one feels for the PALS. But you guys are all I have when it comes to support on this issue. Please help if you can.
 
Hi LisT, I've been trying to stay in the background because I'm just so green. And I can't help, which is why I was so moved by your post. I think that is the part I do understand -- the not accepting, refusing to accept fate -- the helplessness. I spend a lot of time here. I thought I was boning up, getting information, learning. But I realized I was looking for the answer that would make everything right - an answer that will never come. You didn't make me feel bad. You made me feel less alone. And you are not alone. Not here.
 
It is difficult to find someone to share this kind of pain with in your everyday life. The person with the disease has their own concerns and pain that they are experiencing. The caregiver focuses much of their time on the person with the illness because that is where the energy, emotional and physical, must be centered out of necessity. You often forget to take care of your own needs or do not even have anyone around you who can understand you without minimizing your feelings.

It seems you are beginning to experience the beginning of grieving. Grieving is not always easy to figure out as in when does it begin and does it ever end? Years ago when my husband contracted encephalitis our life changed dramatically. He was no longer the man I fell in love with and I had to take on a lot of caregiving responsibility. I grieved the loss of the life we once had and the man he use to be. It took a long time before I realized that I felt sad and pain over what we had lost. Now, we have added brachial amyotrophic dysplegia to our list.

It is sad and it is painful and I cry at times. My husband has always said it is very human to feel all of these things and crying was good. He encourages me to feel it and then package it up and put it on a shelf; it is all always there whenever I want to take it out and think about it again. We, on this board, are here for you and you are not alone.

Mary
 
Its never wrong to share this kind of stuff. You will not make people upset. The truth is this whole disease is already upsetting. You have just spoken what is in so many peoples hearts right now at this moment throughout the world. Its so hard on the partners as well as the people experiencing this horrible illness. I watch my husband just listlessly going through the motions of life. He can barely get to work each day. I am brighter than him most days. Your sweet partner will be well aware of the pain you are going through.
I am sorry that there are no answers. This is the sad reality of losing someone we cannot bare to lose.
I saw a clinical Psychologist who specialised in neurological illnesses. He helped me so much, accept that somethings just plain suck, but that is life. Maybe you could find someone to help.
So so sorry. All I can do is pray for you, and cry for you.
God bless
Aly
 
thank you...
i honestly didnt know i could hurt this much.
i know all of you know exactly what im saying, it just sometimes feels like i am alone in this.
its all too overwhelming and i cant deal with it.
 
Liz, you are not alone. We can't take your pain away but we can listen and send virtual hugs your way.

I understand - I cared for my husband for two years before his death and I thought I was "prepared" for his passing. Oh yeah, I had researched the financial impact of his death before he died. And I grieved the intimacy we lost long before he died. I cried for the man who was no longer the man I fell in love with each time I put him to bed at night. The night he died I expected to feel a real loss, but instead I felt a relief that he was no longer "locked". The following days were empty without caring for him and it was then I realized I had begun grieving 12 months before and now I was alone grieving and it was different -

One day the week before he died, he asked me to ring him all the keys to the property and those on his keychain as well, he insisted I put tags on them and mark them. He told me that someday I would need to know what key went where. I thought it was a waste of my time. (Just last week one of the boarders locked the feed room door in the barn and needed the key - and by gosh I found it!) Suddenly I found myself grieving all over again but this time with a smile as I remembered him and that day!

It's okay to cry - then wipe your eyes and enjoy whatever time you have left together. You have an opportunity now to make good memories - they will never die.

Hugs and prayers -
 
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Oh Diane! Thank you so much for sharing your story with us all. Im also relieved to hear that you felt some relief when your husband passed. I tend to feel so damn guilty when i think that way about Ray. Its not that i want him gone, i just wish this would be over with.
Sometimes i feel like he's already got his whole body, except for a big toe, in deaths doorway. And we're just waiting for that horrible day that he doesnt wake up. It feels like this so often and i hate it. I get scared that if i quit thinking of him as dieing, then i will be even more shocked when it does happen. But to constantly be on edge, worrying and wondering if today will be the day, is killing me too.

i truly appreciate all of your responses. and i hope i can return the favor sometime.
 
Liz, I pray that God comforts both of you going through this very hard time. Love him with all you have each day you both need it.
 
Liz I am so sorry that you are going through this and are hurting so much. It breaks my heart to see good people on this forum in so much pain. I am glad that you feel comfortable and safe enough with us to share your feelings and emotions. The fact that you hold us in such esteem is a true honor. The way you have stuck by him shows just how strong a person you are, the genuine and pure Love you have for your PALS, ( I think you said his name is Ray) and the passion in which you care for him highlights the strength of character you have and what a wonderful person you are. I wish I knew some type of magic words to make you feel better, unfortunately I don't. My advice is to continue to keep the faith. The power of prayer is often very theraputic.
I do not think you give yourself enough credit either. Your strength is amazing. To come on hear and bare your soul and share your emotions and feelings takes a very strong person. You are absolutely amazing! Continue to share your Love with each other and remember bonds between soul mates are never broken. Thank You for turning to all of us and sharing with us. Stay strong and keep the faith, my prayers go out to you!
 
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Ted- youre wrong. you said you dont know any magic words to make me feel better. well, everything that you wrote are just the words that i needed. I thank you so very much. I often forget how strong i am because the focus is always on someone else. i tend to not see things the way they really are when it comes to myself. and for you to say those words to me says an awful lot about your character. we have never spoken before now, and you just pulled me out of the deep end. Bless you.

Rox- Thank you. I intend on loving him until the day I die. Not the day he dies, the day I die.
Mary and Aly- I really appreciate your support. im very greatful that you all have accepted me into this group.
Thank you everyone.
 
Liz you are far too kind. All I can say is that you just made my day! Knowing that in some small way I was able to help one person on here is like having a prayer answered. Since my diagnosis I pray daily for my "forum family" both the PALS and CALS and the scared people who come here seeking answers. Today you gave me a sign that God is listening and my prayers are being answered. Continue to stay strong and keep the faith, and please turn to your forum family anytime you need us, we are here!
 
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you amaze me ted
 
You can rant any time you want. I don't consider it a rant at all as it is a genuine feeling and I thank you for caring so much for Ray. I understand what he is feeling and hope he has not literally given up. How can we help?
 
Hi there,
I'm giving you a virtual hug! Prayers and hugs to you and Ray. I'm glad you are on this website! The support here is lovingly overwhelming! ALS is a disease that is hard to accept for everyone involved. Nobody wants the person they love to be have this disease. You mourn the former life. It's a new reality and every emotion you feel is totally normal.
 
Hi,
I am reading all these posts & crying so much that I can't see the words,Liz my heart is breaking for you .My husband (LARRY) doesn't have a diagnosed after 4 yrs & I am watching him in the same way ,Nothing will ever be the same nothing.I watched my son (RICH) die at age 43 with cancer between whatever Larry has & watching Rich pass 6mos after his diagnosed I know what you are feeling like. Your world is crashing down around you & you can't make it stop.Please just make lots of memories & put God First he will see you through this.Putting this in Gods hands & prayer is what is keeping me going.I pray for all my friends on here nightly & will add you & Ray . This forum & my friends here are the best God Bless all of them. God Bless you & Ray, we love ya
Sharon
 
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