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MarciaA

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Since school let out in June, it seems like the only times I've posted are to either ask for help or to vent. (without internet at home, I have to go to my classroom and use it there) Well...here I am again. I guess what I'm looking for today is not only some shoulders to cry on, but some sort of a notion that my feelings are at least semi-normal. More importantly, however, I'm looking for some way to help myself cope and hopefully thereby help my sister cope.

My husband is supportive. He's a rock...and super-strong, solid rock that doesn't really get emotional about things like this and is able to just go on as if nothing really is any different. Me, on the other hand...I sometimes sport a rock facade but most of the time I'm feeling like a big pile of mush. When I'm busy or focused with something, or know that I'm helping in some way I'm a rock. But it's those other times when I feel sort of consumed by the whole thing and turn to mush.

I know I can't be strong all the time. I try to be strong around Kathy and my daughters but I don't know if that's the right approach or not. I don't want to make it seem like it doesn't bother me, but I don't want to add to the sadness either.

Marcia
 

Barbie4

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Hi Marcia

Hi Marcia:

Nice to hear from you again. I have been thinking of you and your sister Kathy and wondering how you are.

As time goes on, I am not finding it any easier yet. I guess it has sunk in more that it is happening, but there is always this air of heavy sadness around, even when we are laughing. Gail is progressing a little faster than we would like. She feels more than we can see, but she is in her body and notices every new limitation.
We are all trying hard to re assure her, but none of us know how quickly this will come on.
We are determined to have a fun summer, well, as fun as you can with ALS. I am taking off more time from work to spend at the cottage with her and the kids. We just want to have a great summer with as many laughs as we can muster.
I keep trying to find the right answers on how best to deal with all of this, but I am the same as you. Most of the time I feel confused,overwhelmed, teary and with just too much in my head.
I do know one thing, and that is to keep the best positive attitude you can. I am not quite sure how to do this yet, but that is what I am working on.
My husband is the exact same as yours. He is compassionate, but this doesn't consume him everyday, like it does me. I guess that is good, so that he can pick up the slack with the kids.
Gail, Tim and their kids are my motivation to keep going and stay strong.
keep your head up Marcia, cry when you need to and laugh as much as you can.

Thanks for posting your note. It reminds me that I am not alone in my thoughts.

sincerely, Barb :)
 

Jane

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Hi Marcia

I am so sorry for what you and your family are going through. Our family went thru this same thing with my sister. Her journey ended on May 31.
I understand your feeling so well. My husband too was an absolute rock. Never complained when I would leave the house for 6 or 7 hrs. which sometimes became overnight stays. I t was so important to have that wonderful backup.
I found that I concentrated on the things that we needed to have in place and ready to go (suction machine, Bi Pap back up and battery etc.) Other than that I thought only about the present we tried to enjoy all the time we had. We were always aware of the time ticking relentlessly on but did not dwell on that aspect of this awful disease.
I hope you will find strength and comfort in the knowledge that many others share your feelings and understand the stress and emotions you feel.
I have strong faith and found it helped me through the ordeal, I hope you will find the same thing.
Love,
Jane
 

hope

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Marcia,

I do not know if this will help or not but for me it does help. I believe that you should just be yourself and feel what you feel. The more one pushes their feelings inside the more stress will build. When you feel sad it is okay, when someone loves us and truly knows us they know when we are being ourself or not. I cannot count the tears, I cannot count the moments of sadness, I cannot count the feeling of helplessness watching my loved one get sicker. I said to my friend the other day that I try to be strong every moment of the day. It is hard to laugh sometimes so I just do not laugh when I feel I can't. My loved one knows how much I care and knows how hard this is. One day at a time, one moment at a time. The illness changes alot of things but I will not let it change the emotions that we feel.

Sandy.
 

Al

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Hi Marcia. Good to hear from you. I have this goofy cousin that is always saying don't be sorry: be yourself. With this ALS thing you have to do just that. Day by day do what you have to do. Laugh when you feel like laughing or cry when you need to do that. You have to do what you need to do not what you think someone else expects.
 

MarciaA

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116
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Jane,
I'm so sorry about your sister. If you don't mind my asking, how long was her battle?

My husband, too, has suggested that I just go up to see Kathy and spend the night whenever I want to. I don't want to monopolize her time, and yet I want to spend as much time with her as I can...just enjoying the moment.

Marcia
 

MarciaA

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Messages
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PALS
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Barb,
It's always so good to hear from you! Our journeys through all of this seem so similar! Thank you so much for validating my feelings and reminding me to try to have fun!

Marcia
 

MarciaA

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Messages
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PALS
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Owatonna
hope said:
Marcia,

I do not know if this will help or not but for me it does help. I believe that you should just be yourself and feel what you feel. The more one pushes their feelings inside the more stress will build. When you feel sad it is okay, when someone loves us and truly knows us they know when we are being ourself or not. I cannot count the tears, I cannot count the moments of sadness, I cannot count the feeling of helplessness watching my loved one get sicker. I said to my friend the other day that I try to be strong every moment of the day. It is hard to laugh sometimes so I just do not laugh when I feel I can't. My loved one knows how much I care and knows how hard this is. One day at a time, one moment at a time. The illness changes alot of things but I will not let it change the emotions that we feel.

Sandy.
Sandy,
You hit the nail right on the head! :) My stress level is WAY up there right now because I've been trying to contain my emotions. I've got to be honest with myself and with my family and not try to be strong all the time in public.

Thank you for your words! You always have a way of phrasing things that is absolutely beautiful and so very insightful! I hope you know how much that is appreciated! :)

Marcia
 

Jane

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Lost a loved one
Country
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ON
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St Catharines
Marcia

Hello Marcia, Lynn was diagnosed Sept/03 and passed away in May. Her last 8 months were spent in bed. She just know longer had any strength or muscles left to use for sitting. All her limited energy was used just getting thru each day. I am grateful that I was able to stay with her anytime she wanted me too. I knew if she asked me to stay overnight she was not feeling good at all.
Take care Love
Jane
 
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