The floodgates are opening...

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ALS_Daughter

New member
Joined
Jul 30, 2007
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6
Reason
PALS
Country
US
State
MA
City
Quincy
My Mom was DX'd about 3 weeks ago, and I've been in a haze since then. Tonight, I couldn't sleep, and I started to realize that ever since the Dr spoke those words to us, I've been on auto-pilot. Not working, drinking too much, sitting on my couch, just trying to pretend that this isn't happening. Thankfully, in a way, my Mom is 100 miles away, so she doesn't have to see this. I haven't cried once, not even at the appt, but now I can't stop. I knew it was coming, I just didn't know when...This is so so so unfair. I don't really know what else to say, I just need to vent to someone who might understand. Thanks.
 
ALS_Daughter said:
My Mom was diagnosed about 3 weeks ago, and I've been in a haze since then. Tonight, I couldn't sleep, and I started to realize that ever since the Dr spoke those words to us, I've been on auto-pilot. Not working, drinking too much, sitting on my couch, just trying to pretend that this isn't happening. Thankfully, in a way, my Mom is 100 miles away, so she doesn't have to see this. I haven't cried once, not even at the appt, but now I can't stop. I knew it was coming, I just didn't know when...This is so so so unfair. I don't really know what else to say, I just need to vent to someone who might understand. Thanks.

Als daughter, there is nothing wrong with the way that you feel since your mom was diagnosed. The same thing happened to me when my son was diagnosed. It was my worst nightmare. I cried for days, I don't know exactly how long I cried, but I cried a lot. I couldn't sleep. I really wanted my life to end, before this terrible illness took my son. He is gone, and it still hurts. I don't think I will ever get over it. I miss him so much. Every day I watched this terrible disease take a toll on my son. My baby is resting now, but oh God I miss him so. I will keep you and your mom in my prayers. May He bless you and yours.


xoxoxo,
Irma
 
daughter,

I am so sorry you mom has been diagnosed with ALS. It is OK to cry. My husband is a PAL and still find myself crying at inopportune times. It is a shock to say the least. You will need time to adjust and so will your mom. Please feel free to come to this forum and let it all hang out anytime you feel the need. The people here have lots of good advice.
 
Hello Daughter. My theory is you have to give yourself time to adjust to this type of bad news. Everybody handles it in their own way. Try not to self-medicate, if you can. Alcohol is a depressant and you don't need anything else to bring you down right now. Be extra good to yourself and visit us often to let us know how it is going. Cindy
 
I too am the daughter of a newly diognosed parent. I understand what you mean about the distance helping. I think that moments of denial help keep me sane. I was not sleeping at all and very depressed; on the advise of a friend, I spoke with my Dr. about it and was given a sleep aid to take on particularly difficult nights. Getting a good night sleep once in awhile has actually helped me handle things better. Do you have a good support system locally? I am going back to work next week...it will be a good distraction, but I am also scared that I will not be able to handle it. Please feel free to contact me....Perhaps we can help each other through this.
Anna
 
ALS daughter..
It may seem hard to believe, but the days and months right after diagnosis are some of the hardest times, if not the hardest, with ALS. Your brain runs wild with all the thoughts of what will happen and how will you deal with it. The despair and grief are strong and real. This disease will teach you (force on you!) the lessons of taking one day at a time--that might sound like a trite quote but it is truly important to be glad for each day we have on this earth with our loved ones. I just said good-bye to my husband who lived with ALS for 3 years--we had MUCH MUCH joy, adventure, fun and love during those years--there was also much suffering, but I have come to know that suffering is part of the human condition and we cannot expect to be immune--it is how we continue to live and love that is important.
Be gentle with yourself and your family, take care....
Peace and Love, Beth (Former CALS to husband Shannon)
 
Beautifully expressed Beth!
 
I'm so sorry to hear about your mom. I just lost my sweet mother less than 2 weeks ago. The diagnosed is devastating and tears are understandable. I was far away from my mom and my sister did the caregiving. I found that I cried more from a distance because a) I could, and b)the changes sounded so scary. I went to visit as often as I could to see Mom and give sis a break and I didn't cry when I was there---she was still my mom and I was glad to be able to serve her. It's strange, but the reality of whatever stage she was in was not as traumatic as hearing about it. So, I urge you to go and spend as much time with her as you can, as often as you can. I pray that your mom has a less aggressive form and you have several years left together.

God bless your whole family.
Sara
 
Hi Sara- sorry to hear about your Mom. It is harder when you are farther away. My Mom is at the end stage of Alzheimer's and Hospice says it shouldn't be long now. This is hardest on my brother who is out of state. Your Mom knew you were there for her no matter how far away you lived. I can tell because your love comes shining through. Cordially, Cindy
 
Shannons angel

lunarruna said:
ALS daughter..
It may seem hard to believe, but the days and months right after diagnosis are some of the hardest times, if not the hardest, with ALS. Your brain runs wild with all the thoughts of what will happen and how will you deal with it. The despair and grief are strong and real. This disease will teach you (force on you!) the lessons of taking one day at a time--that might sound like a trite quote but it is truly important to be glad for each day we have on this earth with our loved ones. I just said good-bye to my husband who lived with ALS for 3 years--we had MUCH MUCH joy, adventure, fun and love during those years--there was also much suffering, but I have come to know that suffering is part of the human condition and we cannot expect to be immune--it is how we continue to live and love that is important.
Be gentle with yourself and your family, take care....
Peace and Love, Beth (Former CALS to husband Shannon)
You know Beth. Shannon had an angel in you. Now you have an angel in him. I am sure he is watching down on you and is very proud of you for what you have done for him and for us. I hope when my time comes, as it will for everyone, my hubby can read your post and share wonderful memories and true love like you do with others who need it. I also think the one blessing of this diagnosed for me, has been, I have learned each day is a gift for everyone. Sometimes it takes a storm in our lives to appreciate the blue sky. Special thanks to Cindy too. She always has knowledge or compassion that helps. Beth, please know that you and Shannon are my heros BIG HUG! Sherry
 
I know how you are feeling. And I will cry with you. My grandma was diagnosed this week and everytime I see a healthy older couple I cry because THAT should be my grandparents. Thank god I have stubbled upon this site/forum for help. I am trying my best to be positive and forward thinking, lets hope the power of the mind is stronger (at least for a while) then the ALS....
Best of luck to you and your mother,
 
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