Need A Little Support Tonight.
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Mike,
It is okay. You are entitled to say how you feel and it is okay. I have a different way of looking at this. Mike it really is okay to express how one feels, it may not be the same as how someone else feels but that is what makes us all unique.
Sandy.
It is okay. You are entitled to say how you feel and it is okay. I have a different way of looking at this. Mike it really is okay to express how one feels, it may not be the same as how someone else feels but that is what makes us all unique.
Sandy.
BWk
Distinguished member
- Joined
- Jun 6, 2006
- Messages
- 113
- Reason
- PALS
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- grant
- State
- new mexico
- City
- silver city
Hope, You've been through a lot and nobody's made of steel. I'm divorced so I don't know what your situation is like, but I can imagine watching your soul mate decline into this state is very hard. I think about other people in the world who are suffering terrible at this very moment, but it is still hard when you are the one who is sick and you have to deal with all the stuff of this disease everyday and as you do as a caregiver and wife. I don't deal with things well either somedays and to vent or to seek support is helpfull. Take Care. Barry
Al
Moderator emeritus
- Joined
- May 25, 2004
- Messages
- 8,083
- Reason
- PALS
- Diagnosis
- 10/2003
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- CA
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- On
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- NW of Toronto
For the benefit of newer members you can edit your text or delete it by clicking on the edit button doing what is needed and save changes. Or let me know and I can delete it. AL.
emjoi
Active member
- Joined
- Jul 19, 2006
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- 67
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- Lost a loved one
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- Aus
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- Vic
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- Melbourne
Hi Hope.
Sometimes we are expected to do a Great Good Deed in our life. And this is yours, and it sounds like you are doing it well. One thing about this disease is that it strips away the peripheral stuff from lives and places before us the only things that truly matter.
It sounds like you truly love the guy and you are doing the best that you can. So be proud of yourself.
Sometimes we are expected to do a Great Good Deed in our life. And this is yours, and it sounds like you are doing it well. One thing about this disease is that it strips away the peripheral stuff from lives and places before us the only things that truly matter.
It sounds like you truly love the guy and you are doing the best that you can. So be proud of yourself.
quadbliss
those of us who experience als and the mean nasty disease it is do not think you are smug and uncaring. we do realize that you experience the disease on a different level then most of us. you apparently have resources your finger tips to make the disease more tolerable. most of us quickly use up the financial nest eggs we had put away for our future and our care is provided by a loving wife, we watch her use her energy until it seems there is nothing left and they keep giving. we keep taking because there is no other choice. our loving caregivers reach the limits of their endurance and fade away for a few moments of solitude to cry and try to make some sense of this burden. we know that we have the solution, but the caregivers ask us to stay with them and we do. i don't quit trying because of my wife. i am blessed as all of us who have loving caregivers, they are what keep us going.
cartman
those of us who experience als and the mean nasty disease it is do not think you are smug and uncaring. we do realize that you experience the disease on a different level then most of us. you apparently have resources your finger tips to make the disease more tolerable. most of us quickly use up the financial nest eggs we had put away for our future and our care is provided by a loving wife, we watch her use her energy until it seems there is nothing left and they keep giving. we keep taking because there is no other choice. our loving caregivers reach the limits of their endurance and fade away for a few moments of solitude to cry and try to make some sense of this burden. we know that we have the solution, but the caregivers ask us to stay with them and we do. i don't quit trying because of my wife. i am blessed as all of us who have loving caregivers, they are what keep us going.
cartman
JMH
Active member
- Joined
- Jun 11, 2006
- Messages
- 42
- Reason
- Loved one DX
- Country
- CA
- State
- Manitoba
- City
- The Pas
You are so right. It is a horrible disease and no one should have to suffer with this. My dad is 77 and some people say...well, you're lucky you've had him this long. It hurts, I think, no matter the age or relationship you have with the patient.
My had has lost the use of his legs, left arm and suffers greatly with other symptoms. To him, he has lost his dignity and independence - this past year he has went from an active life to an invalid. He says no man should have to live like this. He is right.
My heart goes out to you and everyone else in this forum. It is difficult to put on a brave front as a caregiver - each moment that I spend with my dad is precious, but I think we are all crying on the inside.
Take care.
JMH
My had has lost the use of his legs, left arm and suffers greatly with other symptoms. To him, he has lost his dignity and independence - this past year he has went from an active life to an invalid. He says no man should have to live like this. He is right.
My heart goes out to you and everyone else in this forum. It is difficult to put on a brave front as a caregiver - each moment that I spend with my dad is precious, but I think we are all crying on the inside.
Take care.
JMH
Mike27
Distinguished member
- Joined
- Apr 19, 2005
- Messages
- 280
- Diagnosis
- 10/1993
- Country
- CA
- State
- Alberta
- City
- Edmonton
Hi Hope
Here's hoping that today is a little brighter and better day.
Thank you for posting, by the way. As a PALS, sometimes I'm so wrapped up in my own predicament that I'm guilty of forgetting that my wife suffers every bit as much as I.
I think I'll take her out to a nice dinner and a movie tonight.
As Barry said, you CALS (that term seems so impersonal, but I want to cover everyone) are not made of steel. It's perfectly normal and healthy to cry. I consider it a way of washing away emotional pain when you are full.
Good luck, God bless and keep posting!
Here's hoping that today is a little brighter and better day.
Thank you for posting, by the way. As a PALS, sometimes I'm so wrapped up in my own predicament that I'm guilty of forgetting that my wife suffers every bit as much as I.
I think I'll take her out to a nice dinner and a movie tonight.
As Barry said, you CALS (that term seems so impersonal, but I want to cover everyone) are not made of steel. It's perfectly normal and healthy to cry. I consider it a way of washing away emotional pain when you are full.
Good luck, God bless and keep posting!
CindyM
Moderator emeritus
- Joined
- Sep 17, 2006
- Messages
- 3,556
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- Learn about ALS
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- US
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- New England
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- Anytown
hope said:
As a potential PALS I worry about the emotional and physical drain on those who might have to care for me. I take care of my Mom and it is lonely and exhausting! You are right that things don't seem so bleak to a garegiver who is rested, but it is hard to remember that at times. And I can see where you would want to keep your hubby's spirits up. He must be a wonderful man and I bet he is glad every minute that he has you! Makes me wish I lived closer so I could come in for an hour or two to give you a chance to go out for a bit. Hopefully you have someone who can do that for you?
I would like to thank each and everyone of you for all the kind words and the support. It means so much. This is a wonderful place full of wonderful people. I am sorry that we are all in this. Knowing that I am not alone helps me. We forget sometimes when we get lost in the world of pain that we are not alone, there are caring, wonderful people all around us. Thank you everyone.
Sandy.
Sandy.
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