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Jeannie

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Joined
Dec 19, 2007
Messages
222
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Loved one DX
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01/2008
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US
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Vernon
Hello Everyone
My mother in law was diagnosed with ALS 3 weeks ago after close to a year of endless dr. visits and her symptoms only getting worse. At first they thought she had a stroke, then myastymia gravis and so on. Finally the horrible diagnosis of ALS. She has completly lost her ability to speak and has horrible coughing "attacks". She is understandably depressed, and is on the ridlick (spelling?) meds. She is taking something for the drooling that for a while was uncontrollable.
We are spending as much time with her as we can but here arises our newest issue. My husband and I have 2 young daughters (5 & 3) Our 5yr ikd understands that Grandma is sick but that she can still do things with us. We had her over the other day and did baking together (which was such a wonderufl day) My 5yr old didn't leave her side, even though Grandma couldn't talk. Then, we went over to Grandmas today and she had a pretty bad coughing attack. My 5 yr old said that she didn't feel well and when we left she wouldn't hug or kiss her Grandmother. I was heart broken for them both but didn't want to force the issue.
We don't "overtalk" Grandma's illness as we don't want her to be frieghtened, but she does know that something is wrong.
I am so sorry this is so choppy and long winded, I was just wondering if anyone knows if there is info out there to help young children to understand this in a simple way.
I just don't know what to do, this is so devestating to all of us and I don't want to scare her but her Grandma needs the girls, they give her something to smile at, that is where we are, everyone is in shock and depressed.
Anyone that could help with experience I would appreciate it greatly.
God Bless each and every one of you
Jeannie
 

Al

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Hi Jeannie. If you hit search above and type in When/what to tell my kids there is a link there that may help.
Also at the bottom of this page is a topic called Helping kids understand. Click on it and there is another link there.
AL.
 

Jamiet

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I once read an article on cnn.com, it was a lady that had ALS. It went on to detail how she explained it to her kids. I think, personally, they must be told and in a way they understand.

Go to cnn.com, do a search for ALS within CNN and see if you can find it.

The lady said she explained it like a letter being mailed...i.e. from the brain and the postman delivering it to the "muscles", but, all of a sudden, the postman quit delivering the mail, so the "muscles" don't get any information. I thought it was excellent.

Good luck and sorry your going thru this.

Rgds,

Jamie
 

mamaoftwo

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The woman Jamie is referring to is Aimee Chasternik (think that is how you spell her last name). She was diagnosed with ALS just after the birth of her 3rd child. She was 34 yrs old. She has a website - www.askaboutaimee.com
If you go there you can read about how she explained to her kids what ALS means and what it is doing to her body. Aimee's kids are now 9yrs, 6yrs and 3yrs old I think.
 

Jeannie

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Joined
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Messages
222
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Loved one DX
Diagnosis
01/2008
Country
US
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Thank you for all your wonderful information and advise. I will look into it all.
Thank you from the bottom of my heart.
Jeannie
 

kelly

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Kids are amazing

My boys 3 and 5 have been dealing with their Dad's declining health for 2 years now. They are amazingly resiliant(sp). They know that Daddy can't wrestle...but he can watch them play webkinz. It is just a new normal. My boys hold the door open for their Daddy, and help carry his things into the house. It is just part of our lives. I think it is best to keep whatever "normalcy" is left.....or just create a new normal for them. Sorry to hear about your struggles...I know it is not easy.
 

brooksea

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agree with kelly...kids just accept things around them unless you make a big deal about it. When they have questions, answer them honestly on their level. They'll go on their merry way and live with it. IMHO
 

Carolan

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CALS
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TX
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Dallas
Then, we went over to Grandmas today and she had a pretty bad coughing attack. My 5 yr old said that she didn't feel well and when we left she wouldn't hug or kiss her Grandmother. I was heart broken for them both but didn't want to force the issue.

Are you sure that your 5-year old isn't getting sick? Or perhaps she is worried about "catching" whatever your Grandma has. Have you explained that the disease isn't contagious? I realize that the word "contagious" might be too big for a 5-year old, but the concept should be familiar.

My mom has been around some young children, in spite of the fact that she is ventilator-dependent. I just explained that the machine helps her breathe but that she still loves to have visitors (albeit for a very brief stay).

That being said, every child is different, and sometimes it's difficult to know what is going through a child's mind without asking. It sounds like you are doing a wonderful job of supporting your grandmother and nurturing your kids, though. I'm sure you will figure it out with time--please keep us posted!
 

Jeannie

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Joined
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Messages
222
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Loved one DX
Diagnosis
01/2008
Country
US
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NJ
City
Vernon
Thank you everyone again!
Carolan it is funny that you mentioned telling her its not "contagious". I spoke to a social worker yesterday and she said that we sould definitly let her know that she can't catch this. I had a quick 5 year old chat with her about it when we were alone and she seemed better, we will see how she is when she sees my mother in law on Friday for dinner.
It is so sad but we are all rolling with the punches and making the best of what we can. My mother in law is only 58 and of course since the news is so fresh she is devestated. A person I spoke with said that her ALS has come on with a vengince. She goes to the pulmonologist and another EMG tomorow.
GOod thoughts to all of you and your loved ones, sorry we are all meeting under these circumstances
God Bless
Jeannie
 

Allison Ferraro

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Joined
Feb 6, 2008
Messages
4
Reason
CALS
Diagnosis
01/2008
Country
US
State
New York
City
Levittown
Thanks

Hello Everyone
My mother in law was diagnosed with ALS 3 weeks ago after close to a year of endless dr. visits and her symptoms only getting worse. At first they thought she had a stroke, then myastymia gravis and so on. Finally the horrible diagnosis of ALS. She has completly lost her ability to speak and has horrible coughing "attacks". She is understandably depressed, and is on the ridlick (spelling?) meds. She is taking something for the drooling that for a while was uncontrollable.
We are spending as much time with her as we can but here arises our newest issue. My husband and I have 2 young daughters (5 & 3) Our 5yr ikd understands that Grandma is sick but that she can still do things with us. We had her over the other day and did baking together (which was such a wonderufl day) My 5yr old didn't leave her side, even though Grandma couldn't talk. Then, we went over to Grandmas today and she had a pretty bad coughing attack. My 5 yr old said that she didn't feel well and when we left she wouldn't hug or kiss her Grandmother. I was heart broken for them both but didn't want to force the issue.
We don't "overtalk" Grandma's illness as we don't want her to be frieghtened, but she does know that something is wrong.
I am so sorry this is so choppy and long winded, I was just wondering if anyone knows if there is info out there to help young children to understand this in a simple way.
I just don't know what to do, this is so devestating to all of us and I don't want to scare her but her Grandma needs the girls, they give her something to smile at, that is where we are, everyone is in shock and depressed.
Anyone that could help with experience I would appreciate it greatly.
God Bless each and every one of you
Jeannie

Hi My name is Allison.

My husband Joe was recently diagnosed with ALS in Jan 08, and we have 2 daughters ages 2 & 7...I was wondering the same things you asked.... My daughter is used to her father (31) doing all sorts of things with her and now he cannot ...he use to coach soccer and he cannot this year...so we are trying to come up w/other things they can do together. like rent movies and play board games w/her help of course. I am sure they will come up w/their own little routine. My 2 yr old is too little to understand, but she loves to help get things for her dad...like the remote, his shoes, and help put his socks on. This is all new to everyone and unfortunately this is horrible thing is part of our everyday life. So like someone else said we have to make life as normal as it can be ...and I will do that for my girls and Joe. God Bless you and your family...Thanks for asking your questions. It was a great help to me.
 

Jeannie

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Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
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NJ
City
Vernon
Dear Allison,
I am so sorry for your husbands diagnosis. Thiss is a horrible disease that unless you are affected you hear very little about it. You might want to phone our als association or social worker and they can give you or send you some info to help your children, that is what I did and it just arrived today. If you ever need to talk I am here. Again, I am sorry for you, your children and your husband Joe.
Thinking of you
In friendship
Jeannie
 

Carolan

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Joined
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Messages
93
Reason
CALS
Country
US
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TX
City
Dallas
My daughter is used to her father (31) doing all sorts of things with her and now he cannot ...he use to coach soccer and he cannot this year...so we are trying to come up w/other things they can do together. like rent movies and play board games w/her help of course. I am sure they will come up w/their own little routine. My 2 yr old is too little to understand, but she loves to help get things for her dad...like the remote, his shoes, and help put his socks on.

Allison, I am so sorry that your husband is going through this at such a young age and with young children in the house. It sounds like you have a good plan to get your children involved with "helping out." I hope that your older daughter will also be able to help *you* out because it's really important for you not to exhaust yourself. At the same time, she will still need to feel like a kid as much as possible. What a difficult balance.
 

Carolan

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Messages
93
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CALS
Country
US
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TX
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Dallas
I had a quick 5 year old chat with her about it when we were alone and she seemed better, we will see how she is when she sees my mother in law on Friday for dinner.
I hope that dinner goes well this evening. Good luck!
 

brooksea

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Jeannie can you tell me what info the ALSA sent to you for kids?

I've had a real problem getting anything meaningful from our local ALSA on the subject.

THX
 
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