overwhelmed

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nic01

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Sep 17, 2005
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My mom has been diagnosed with ALS for a month now, and she is handling it so well. Much better than I am. I'm 39 years old and last night I sat on her lap and cried like a baby. Pretty silly, I know. I feel bad because I should be comforting her, not her comforting me. But how do you tell some one it'll be all right when it won't be? We're renting her an electric wheelchair until hers is ready, because she is so unsteady on her legs, her left arm is paralyzed and her right arm is getting weaker. She can still talk fine though, which is a blessing. I think that's what I fear most, the silence when she won't be able to talk. It's all so overwhelming, how do people do it?
Thanks for listening,
Jennifer
 

Granny

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May 18, 2005
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Hi Jennifer,
I is not silly at all to cry for your Mom. And it is also ok for her to be the strong one now. She knows you love her.
I think with this disease we learn to focus on today and not look at what might happen in the future. Maybe your Mom won't lose her voice, and let me tell you, even though I cannot make words, there is not silence in my house when I am here alone with my husband. I am getting great at charades, with some words thrown in that he mostly understands from the inflection, I have a white board that I wear out a pen on most every day, and a communications device that I type into and it speaks for me. Would I prefer to have my voice, I sure would. But, I do not so I have been given these ways to communicate.
I know these things are very hard, sometimes I think harder on the loved ones that on the person with ALS, but you will get through it.
I wish I could say these things in the kind and compassionate way that Carol and some of the others do, but hope you know that we care for you and your family and will help support you in this journey.
Post whenever you want and I will pray for you.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
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CA
State
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Hi Jennifer. There is no secret formula for coping. We just do what we have to do. You'll learn how as things progress. Your mom is just newly diagnosed but it sounds like she has been having symptoms for a while. At least now you know what it is. Have you had time to download the Manual for Living with ALS? It gives information and advice for caregivers as well as for patients. It runs over 100 pages so it will take a bit of reading but some of the material won't be needed until later. Good luck. Al.
 

sjane

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Joined
Mar 22, 2004
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Hi Jennifer, my thoughts and prayers go out to you and your family. My Mum was diagnosed with limb onset ALS when I was 39. She lost the use of her legs first and then her right and left arm , she kept her voice until her last week although it was sometimes difficult to understand what she was saying. It was amazing what her eyes could tell you. My Mum helped us get through by taking each day as it came and giving thanks for it. We took the time to smell the flowers, watch the sunset, listen to music, enjoy friends (very important) and give thanks for our family. She was amazing. Just do what you can and let your love show.

Jane in Sherwood Park
 
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