Caregiving ... What outsiders need to know
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I'd like to add to the list and maybe others can join in.
13. Don't ask the generic question, "If there's anything I can do let me know." That's so lame. You are standing in my driveway or inside my house. Look around. Pick something and tell me you will be back to do it for me. cALS have so much to do they cannot think straight, let alone keep up with everyday chores.
13. Don't ask the generic question, "If there's anything I can do let me know." That's so lame. You are standing in my driveway or inside my house. Look around. Pick something and tell me you will be back to do it for me. cALS have so much to do they cannot think straight, let alone keep up with everyday chores.
maryhahnward
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- Jun 17, 2009
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- 445
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- CALS
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- 06/2010
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- Wilmington
Excellent list - you could call it The ALS Caregivers Bill of Rights
14. Sometimes we get to be sad and you don't have to work overtime to make us feel better. Don't be afraid to be just be there for us.
14. Sometimes we get to be sad and you don't have to work overtime to make us feel better. Don't be afraid to be just be there for us.
retiredmus2010
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- Apr 12, 2011
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- 04/2010
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Oh yes Brooksea~~~~ you have hit my last nerve with that one. At one point, if one more person, made that statement within my hearing, even GOD himself would not have been able to intervene, prevent or warn the person. I am " out of control" when that is voiced. Are they really that stupid ?
Pandora: I have printed out that list and plan on taking it to our ALS support group. I will sing your praises and give you all of the creative credit. I have alternately, laughed, cried and almost wet my pants. A litany of our lives as CALS.
I thank you from the bottom of my heart. I am also planning on taping it to the bathroom mirror ( in my bathroom).
Please keep those creative juices FLOWING!
G.
Pandora: I have printed out that list and plan on taking it to our ALS support group. I will sing your praises and give you all of the creative credit. I have alternately, laughed, cried and almost wet my pants. A litany of our lives as CALS.
I thank you from the bottom of my heart. I am also planning on taping it to the bathroom mirror ( in my bathroom).
Please keep those creative juices FLOWING!
G.
wandabrittle
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Great words! Love everything you said! Love Wanda Brittle xoxox
themommy
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- May 3, 2012
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- 03/2012
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15. And don't give me "the look". That sad little pathetic look you all get on your face. Hug us - love us - bring us flowers for no good reason - but don't pity us. We are here because we want to be. We don't need your pity. We need your help, your support and your love.
16. If you are going to be a part of our lives - for the rest of our lives - do some research to be able to hold an intelligent conversation about the disease. It becomes the center of our lives - everything revolves around it. If you love us - then figure out a way to understand the reality of life with ALS. Don't try to pacify us - because we can see right through that thin veil.....
16. If you are going to be a part of our lives - for the rest of our lives - do some research to be able to hold an intelligent conversation about the disease. It becomes the center of our lives - everything revolves around it. If you love us - then figure out a way to understand the reality of life with ALS. Don't try to pacify us - because we can see right through that thin veil.....
pmbenb83
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- 03/2008
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I LOVE this! I haven't laughed in days and now I don't know if I will stop. You are awesome! I'm going to share this on FB too. My family is going to crack up!
{{{HUGS}}}..... LOVE IT!
{{{HUGS}}}..... LOVE IT!
Please feel free to share
panguinjen
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Pandora,
That's perfect! Love it! On mine, I'd like to add "Don't tell me to pray your way, because if I did, there would be a cure!"
Jen
That's perfect! Love it! On mine, I'd like to add "Don't tell me to pray your way, because if I did, there would be a cure!"
Jen
dragonflydi
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- CALS
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- US
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- NY
- City
- Fredonia
It is indeed frustrating to hear "Let me know if there's anything I can do", but I honestly think most people really mean it. They really want to help but just don't know what to offer. Most of us have been up to our necks in this for some time or else we have been recently blindsided. We learned fast. But most people have NO IDEA what we or our PALS are going through. Some of my friends have actually asked when Tom will be better. So now I have a list ready. When someone asks, I give them a task. Picking up groceries, taking my car to the shop, sending a package, whatever. There is always something on the list that I don't have time to do. And I've also become very pro-active. The MDA Lotsa Helping Hands site is wonderful. I use the calendar feature all the time to post requests for help. The best part is, you don't have to make a million phone calls or send emails. Just one posting and then check the calendar to see if someone signed up. Brilliant! -Diane
dragonflydi
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Forgot to mention that the Lotsa Helping Hands site is also great for communicating to friends and family near or far just to keep in touch or to let them know how your PALS's illness is progressing. I've posted loads of photos and monthly updates. I also posted some basic information about ALS to stave off those "When will Tom be better?" questions. Everyone loves this site and I've gotten some wonderful responses. It's a great way to educate people about ALS. -Diane
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