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Cassandra21

New member
Joined
Mar 22, 2013
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1
Reason
Loved one DX
Country
US
State
CO
City
Denver
I am new here and just looking for some support. My dad was diagnosed last Feb, he is 56 years old. I am an only child, with 4 young children of my own. I have been having a hard time coping with this disease. He is almost completely paralyzed now. His speech is getting harder to understand also. He has a feeding tube, but can still eat a little. I am having such a difficult time and I am finding it hard to support my children, they are 12, 8, 5 and 2. When I try to talk to them about it I start crying and find it difficult to continue. Does anyone have any suggestions for me?

Thank You in advance
 
Cassandra, I am so sorry for all you are going through. I suggest you look into a local ALS Support group, you would find support and understanding in such a group.
ALS Canada has some guide lines for talking to children, they are, Helping Children Cope With ALS and When Someone Special Has ALS.
I am not sure if this the info you want, but I think they would have similar info from you local ALS office
This forum is also a good place to get info and support, and just to vent when the need arises. The foks here are just wonderful.
Do you have help to care for your Dad, if not can you recruit family or friends Hope this is of some help to you.
 
Cassandra

My dad is also 56 and was just diagnosed. I have two young children who are basically his world and vise versa. I went on ALSA.org and ordered a book called "My Grandpa has ALS. They also sent me a few books for diffrent age groups for kids. I think they really help and explain to them exactly what is happening. It says in the book that "MY mommy Cries" that made me feel alot better because i don't know about you but it is very hard not to cry when you talk about it. We spoke to our DR. last week at the mayo clinic and asked his opinion about telling my boys and he said that we needed to be honest. I also feel very overwhelmed trying to be there for my parents and trying to run my household. I have decided that i just take one day at a time and do what i can. I make a list everynight of what needs to be done the next day and you know sometimes it does and then sometimes dad needs me more. We can only do as much as we are physically able to everyday. I pray every single night and morning when i get up for god to give me the strength to get thru the day. then i think if my dad can i definetly can.
 
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