husband diagnosed 8/7

[Icanmanz]

Gina, my heart ached as I read your post. When I got to the tractor part, that did it. I hate this disease! This disease affects so many people all the way around. I love this forum. I stated in an earlier post that every time I read a post from you guys, I feel like my son is standing next to me talking to me, sometimes in pain, sometimes accepting this damn disease, assuring me that he is fine with it, and not to worry, It's liitle things like that that run through my mind. What I am trying to tell you is that this forum soothes me, drives me to tears, breaks my heart all over again, opens some very serious wounds, turn to my Almighty Father big times, there is so much that I want to write down, but I do not want to make this post too lengthy. God bless!

Irma

 

[Al]

Hi Gina. Sorry about your husband. The tractor and car will probably appreciate in value if he keeps them longer. Unless the kids need the money now why doesn't he at least keep them until spring. The market will be better for them both then. It'll be snowing by next week here so there probably won't be many out looking for convertibles.
AL.

 

[Gina]

Hi Irma thank you so much for your reply to my post.From Reading some of your other posts i realized that you had lost a son to als.I cannot imagine how painfull that must be and yet you are on here supporting others to help them through thier own pain.God Bless you!You are an angel!

 

[Gina]

Hi AL,My son said exactly the same thing and i agree except i think that glen thinks that he will not be around in the spring and we would all rather have him sell the tractor and the car because they were both his pride and joy and if he were not here it would break my heart to have to sell them myself.But maybe i will bring that point up to him.As for the snow i hope you are wrong about that im not a winter person love to be outside but not when it is cold!

 

[swmn]

help is all around

Hi Gina - my friend was diagnosed about 18 mo. ago- he is in the same condition and his wife feels as you do. I am a close friend and I too, feel alot of the sadness as my friend has everything taken from him. I hope you will take seriously all the people who offer help. People around you will want to help and all you need to do is ask - they are waiting to help, but will not want to be intrusive either. As a Friend who is willing to help any way I can, I hope you and your husband will find comfort in the daily suppport of friends.

 

[Gina]

Yes you are so right help is all around

Thankyou so much for responding to my post.I guess it has always been hard for me to ask for help but i am learning very quickly that now i have no choice but to ask.My familly has been wonderfull to me and glens familly have been helpfull as well.My children are always ready to help but they all have small children so they do not have that much time to spare either.My son and his wife just had a new baby two weeks ago and he is on paternity leave now so he will be able to help me out more.I find the hardest part of dealing with this disease is the emotional roller coaster. I do talk to my children about it but thier dealing with thier own issues and i have a tendancy to try to protect them from it.Anyway i guess what i am trying to say is that the emotional aspect is where i run into trouble so i am hoping that i will find the support and a safe place to express my feelings without worrying about upsetting my friends and familly too much......gina

 

[trying to stay positive]

Hi Rose,
You sound like an incredible young lady. Thank you so much for your message. Movies sound like a great idea. I have been taking quite a few pictures lately also. I purchased a digital recording device with the hopes that my husband will make messages for our daughter to be given to her at various milestones in her life. Such as graduation (be it college or high school) her wedding, the birth of a child, etc.. That way even if her dad has already passed, she will hopefully still be able to feel that he is still "with her" at these special times. Everytime I think about this or talk about it I start to cry, but I think it will mean alot to her. She doesn't say alot about the disease but I see her watching him and I can tell it is breaking her heart. Sometimes I feel so helpless to help either one of them.
Thank you, Rose, for caring enough to write. I think Cindy is right. Your dad must certainly be so proud of you! Linda

 

[Poco]

I will give you my advice now that I lost my husband in July after only a year. I became a very effecient caregiver, read the books etc and made sure he ate right and all the functional things that needed to be done from insurance, to running the house , but what I failed to do was give him the emotional support from a wife's perspective. I was so busy researching etc. when I had a free momnent and trying to figure everything out that I burned out and just wasn't there emotionally. I never anticipated him dying so quickly and if I could go back in time I would have held him more, read to him when he could no longer turn the pages. played games with him. When I finally planned a trip he was no longer able to go on one, too weak and too tired and afraid to be away from his own bathroom or hospital bed. I was so busy taking care of all his physical needs and being a perfect nurse that somehow I lost touch with the most importnat part of our relationship. We did date night once a week at first but then that became too much. You have to hug him because he can't hug you back with paralyzed arms and somehow the hugs got lost and were replaced with dressing him instead. That is what I live with everday. He knew I loved him but a different relationship evolved and if I could change anything it would be the quality time we spent together, and not all that other stuff that didn't matter anyway because the disease took its own course in spite of all my research. I don't look back and think if I only tried this remedy or that, I look back and think why didn't I hug and kiss him more and act more like a wife instead of a robot. For you it will even be harder because you have a child at home. Just try to build all the quality memories you can as a family and make that is number one and all the rest can just wait another day.
Phyl

 

[CindyM]

Phyl- No matter how much you did you can always look back and wish you had done more. At the end of the day we are only human. Please take peace in the knowlege that he knew from your nursing care how much you loved him. Look at it the other way around: you could have spent hours reading and hugging him, only to have him wish just once somebody would wash his face! Just don't beat yourself up too much, OK? Hugs, Cindy

 

[brooksea]

Phyl,

I agree with Cindy. Please don't feel guilty about the "should'ves."

But, I do appreciate you as a caregiver showing us yet another perspective on how ALS affects relationships between husband and wife. Believe me, I have heeded your words, as I find myself in the same position.

Thank you so much for sharing that with us.

 

[Just J]

Linda thank you for your post and listing the history of your husband. My husband has yet to be diagnosed but like you, after 2 yrs and 2 operations and no diagnosed, we are now realizing this could be something more serious (and we thought a diagnosed of MS would have been bad). We will see MND specialist in early January and hope all of the indications are wrong. Though my gut tells me otherwise so I will remain hopeful until the docs throw down the guantlet. Stay positive and support your man in every way that you can. Its not easy and won't get easier so enjoy smiles and laughter as much as possible. My prayers are with you and your family.

 

[Brenda]

Hi Linda so sorry for you, my best suggestion to you is to get involved with a clinic in your area, The clininc at RWJ in New Brunswick NJ was wonderful, everyone was so helpful and always there for us.
My husband went within 14 months of diagnosis, but may have had it prior to us meeting in 2005. Get your daughter involved in support too!
Brenda

 

[Rachel]

Please click one of the Quick Reply icons in the posts above to activate Quick Reply.

 

[Al]

Think your message went astray Rachel. Try it again. Click on the pen and paper on the right side and type in the box and then click post quick reply below. Welcome here as well.
AL.

 

[freddiesnetty]

poco,
thanks so much for that post, it is just what I needed.especially today,If any can believe this we are in an argument, His has a "past". He was a famous musician, Irma knows of him. When he was an entertainer he was a "player" I have to deal with his groupies STILL! It is aggravating because I am the one dealing with all of the "dirty" work. I do sometimes get so busy with all the care. I do work outside the home and am raising my 2 year old granddaughter. I think that is what keeps "Pappy" going sometimes.
I am new here, you couldn't tell though as much as I post (and ramble) SORRY 'bout that. I have just found that this is where I should be, you can talk to other people about your Pals,every one seems they just don't get it or sometimes not even know what it is. So here is so comforting, this is the second place I come home from work, to hubby first. But you are right, I hug, but not as much as I need to due to fatigue, but I know there will be a time for rest later, so lets keep HUGGING Much love to all here and I pray for all of us. THANKS!
Annette