so sad when reality sets in

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luminosity

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So sad when reality sets in...

hi to all,

I am new to this site... My dad was diagnosed with ALS in Dec. 2004. I'm 27 y/o, single parent of an 11 mo. and I moved in with my parents about 5 months ago to help out, and so Dad could see his grandson more often... I am the type of person who tends to deal with problems by prentending that they are not happening. For example, several years ago, my younger sister ended a long battle with depression by committing suicide. To this day, I still sometimes try to convice myself that she is merely on a long trip abroad, or something, and will return someday.

I am really struggling lately because living with my parents is forcing me to face the reality of my Dad's disease. When I moved in with them in Feb 2006 my Dad was still able to go to work and live a normal life... Now, he can barely walk, even with the walker. I sit back and watch my baby son develop motor skills at almost the same rate that my father is losing them... and I just don't know what to make of it... I just wish I could stop time, halt everything for a while... but I know I can't

Yesterday, it just hit me like a ton of bricks that he is actually going to die from this... I feel like I'm drowning --- I just cry and cry and cry and cry.

I want to talk to him about it, but I don't want to upset him by showing him how devastated I am... hopefully there is someone else out there who understands where I'm at right now...
 

MtPockets

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luminosity welcome

Just wanted to welcome you to just what you need, support. You are definitely not alone in your feelings as you watch what is happening to your dad. I'm so sorry. As you read over this site you will find lots of others who are facing the same feelings as you. You are not alone. The ALS/MND Caregiver Support Group will help you a lot with this. There you can visit and find others who are experiencing your same feelings and receive the support of other care givers.
I wish there was a way of making your pain go away. ALS is a terrible disease and the more you learn about it the better you may be able to help your dad and to cope with your feelings. I'm sorry words cannot express the ability to lift this burden from your shoulders. I will be praying for you.
God Bless,
Big AL
:cry:
 

gilly

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Al's right!

hi there and welcome to the group. al's right about you coming into a forum filled with love and support. now you will always have a place to let your emotions run and ask for guidance and advice. i would guess that at some point a little breakdown between you and your father might actually feel good. sometimes i just tell my aunt (who has als) that i wish i could take it away and give it to myself instead. it kills me to know how freightened she is. but on some strange level she appreciates my honestly in telling her i am afraid too. she feels less alone and more like we're all in this together. and my transparent moments let her feel like it's ok to let herself cry and breakdown. let the tears run when they need to. they always stop at some point and then more than likely you will find some time for a little laughter to replace the tears.

i hope you and your family find some peace with all this. it's hard.

lots of love... and of course you must know how wonderful you are to move in and show such amazing support to your father. seeing you and his grandchild certainly makes a difference in each of his days with ALS.
 

Al

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Hi luminosity. I moved your post over here. Sorry for your dad's condition . I hope you find some friends and support here. There are some great people here. If you need anything just ask. AL.
 
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hello, and (((HUGS)))

I know how you feel, as I was blessed to be the daughter of the most beautiful woman that ever took in air here on Earth.

She battled bulbar onset for about 2 years before she earned her wings, and she has taken up permanent residence with our Lord and Saviour Jesus Christ.

I had so many nights & days that were all blurs and so many times that I cried over my SUGAR MOMMA...

in the end, I feel so blessed that I am the last person she saw here on Earth, and it is hard....it is very hard....but the Lord giveth us grace...you will find the grace...

you are blessed in a way because you can do for your Dad, you can say EVERYTHING that needs to be said, I was blessed that way too...so many children dont have that chance.

If you need a friend, I am here, just give me a hollar.

God bless, Kimberly
 

So Sad and Lonely

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UnBelievable Lost

I am a 41 year old married woman who has just lost my 20 year old daughter to als. Which I am told is very rare at her age. She was in college starting her 2nd year and in December of 2005 had a stiff neck. By Jan 2006 we flew her home from college and she was slurring and starting to fall. We at first were told she had mystina gravis (immune system disease) and with plasma freezais treatments she would recover but need to take medication. But to our despair she did not respond and we spent so many days in hotel and the Cleveland Clinic 14 days the first time and 10 days the second time. After all the test we where told it was Als and a rare very aggressive form and she had 3wk to 6 months. We took her to hospice for 2 weeks and decided she wanted to go home and we were going to give that. We had around the clock nursing for her to help us with her feeding tube and suction machine. She passed away 2 wks later and only 5 months after getting sick. My daughter suffered so much but she never complained she was always giving a smile and a numbs up sign. She is the only child I had and after 20 years she was not only a daughter but my best friend we spent alot of time together. Life is so hard to watch everyone go on with their children including my husband whose has two children. I have moved to an apartment as I can not deal with step-children. We were never close to begin with and it is just heart breaking. I am so desparate just to connect with one other person to understand how and what I am going thru. I am in counseling but I guess I was hoping someone out there would understand. Thank you for listening and taking time to read my entry.
 

Al

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Hello. I can not imagine the pain of losing a child at that age to such a devastating illness. I almost lost our son at about the same age to a car crash but he recovered and we are thankful to have him 16 years later. As you say it is very rare for someone so young to get ALS. Just the diagnosis is like a stake through the heart but to lose them so quickly is almost unimaginable. I hope with the passage of time your wounds will be come bearable. They will never heal but hopefully you will be able to work your way through this dark time in your life. If there is any thing we can do to help feel free to ask. We are here for the people with ALS and the survivors. AL.
 

LUVELYROSE

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Hi I am also new here and my dad was too diognosed with ALS. I am 15 years old now. He was diognosed when I was about 11. He lived with ALS for 2 years I tried to be brave but one day it all came crashing down on me. I was watching a movie where a girl got married and she and her father had heir father daughter dance I turned and looked at him and asked if he would make it that long. when he said he didnt think so it broke my heart. but I still stayed strong, I guess as daddy's little girl i felt that I had to stay strong for him but the first time I actually cried about it was when we had our councler over at our house and all three of us talked about it my dad started to cry and that was the worst feeling I ever felt. Once he started going down hill it killed me to watch him he could walk at all he started having slurred speach. when he couldnt talk at all it was so hard on me. but the night before he died I stayed at his house [him and my mom were divorced] at this point he was barly awake. I talked to him all night and before I went to bed I told him it was okay for him to go and I would be ok. he died at 4:24 am on october 7, 2004. That was the first day I had every seen my grandma cry. when we had his ashes put in a stone wall my grandpa could even say his speach.


so to any body that has a loved one who has ALS or any other disease I think if I hadnt talked to my dad about it I would have regreted it.
 

brooksea

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LuvelyRose,

Very sorry for your loss. You are so young to have lost your father, but a very brave and mature young lady.

I hope you have been able to move beyond your grief by now and have kept all the precious moments in your heart to share with your children in the future.

Bless you.
 

CindyM

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Hi Rose- your Dad would be proud to see the mature and thoughtful young lady you have grown into. I know he would want to also know that you are busy with friends and school and doing all the things teenagers like to do. He and you were lucky to have those last few hours together. Kind of a lot to handle on your own, though. Write more and talk to us about whateveryou would like! Cindy
 
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