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Melroo

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Sep 12, 2007
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Reason
CALS
Country
US
State
Florida
City
Merritt Island
My mom was diagnosed in March of this year with ALS. Her symptoms looking back started about late September/ early October of 2006. First she was just falling a little more than usual. then breathing was labored...now she can barely walk without a walker she uses a bipap machine at night, she cant roll over when she sleeps..someone has to be with her 24/7 because if she tries to sit down or stand up by herself she falls...my dad is the primary caregiver and he is always mad, he wont talk to anybody, my mom is constantly crying... i know that crying is theraputic but it is to the point that it is self destructive for her...she cant use her limited functions after she cries.... what can I do... this really sucks.. I am only 21 years old, trying to work and go to nursing school, I live with my boyfriend so I am trying to have a relationship, and I am trying to hold my family together.........I AM SOOOOOO SCARED!:( :(
 

bellard

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Feb 28, 2007
Messages
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Loved one DX
Country
US
State
Arkansas
City
Fayetteville
here are my 2 cents of support

Hello,

So sorry you are having to deal with "the monster". Yes we refer to ALS as "the monster". He will kill all hope and faith in yourself and humanity if you let him win.

My mom at 74 was diagnosed with ALS in February 2007. My husband and I sough all information available, attened support groups, spent endless hours talking and researching on the internet. Our first obsticle was to communicate. We live 600 miles away, and Mom was quickly loosing her speech. And she refused to even look at any speaking device, and the hometown siblings supported her wishes totally without question.

We bought her a computer and taught her how to Instant message. We have had many months of "fun" conversations on line. Never anything deep.

Our efforts were considered as being overbearing to mom and the siblings. It has caused much bad feelings. All of us, have experienced anger, frustration, fear, and loneliness as we have fought, "the monster". I guess the best advice in the world, is do not take it personnel. It is not you, it is the Monster that causes all the bad and scary feelings. All any of us are doing is reacting, to "the Monster".

If you do not have a faith, find one, because sometimes it is the best support you can have. Find your local support group, or the closes one, and attend regularly, because they will support you as much as they need you to support them. And they can also help you know what to look for.

It does not matter is anyone else from your family goes to support group meetings. You owe it to yourself to go for you.

This is only my offerings of support, and advice so I hope it did not come accross as too overbearing. I have my own battle waging against the Monster as well.

Good Luck and have faith!


Bellard
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
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On
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Hi Melroo. Sorry you have to be here. Glad you found us. Has your mom registered with ALSA or MDA? They can help your dad to find some caregiver help so he won't feel so frustrated and angry. They'll also offer them help with support as well. If they haven't registered you may be able to do it for them and at least find out what help is available.
AL.
 

brooksea

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HM
Melroo,

Sorry your Mom has ALS. It can be very frightening and overwhelming. As Al suggested, please get in touch with your ALS Association. Is your Mom going to an ALS Clinic? The social worker there can also be of help. I'm sorry your Dad is angry, but this disease or Monster as bellard called it, will bring out so many different emotions. He cannot help it. Your Mom could be constantly crying due to frustration or she could have the emotional issue that some people with ALS get - like laughing or crying uncontrollably.

Hang in there and know that we care.
 

CindyM

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3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Melroo, I am so sorry about what is happening to your family! It is a lot to cope with. You sound like a great daughter to want to help both parents through this difficult time. I hope we will be able to help! Regards, Cindy
 

Rae

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Joined
Jul 12, 2007
Messages
12
Reason
PALS
Country
US
State
NJ
City
Pennsville
Support

Hi Melroo,
Sorry you are having to go through this. My husband passed away August 18th after a two year battle with ALS. He went through the crying almost constantly until the Doctors put him on Zoloft. It really helped. I agree with everyone else, you need to get in touch with the ALS Assoc. in your area and if your Mom hasn't been to an ALS clinic - get her there. They are so helpful and understanding. Best of luck to you. Rae in NJ
 

Melroo

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Joined
Sep 12, 2007
Messages
2
Reason
CALS
Country
US
State
Florida
City
Merritt Island
Thank you.....

Thank you sooo much for your support....mom can barely type now and any discussion of "the monster" gets her hysterical. I am trying to persuade her to go on medication which is tough and when that doesnt work I try to persuade her to use alternative methods like meditation and visual exercises....Dad doesnt discuss feelings very well and I am trying to work on that. It seems as though Mom has had some pretty good days lately and I am going over there tonight to finish her mani/pedi then her and Dad are going out to dinner which always make her happy.....Thanks again!
 

CindyM

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Joined
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Learn about ALS
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New England
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Anytown
You are doing a great thing to encourage they do some fun things together. Keep up the good effort! Cindy
 
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