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mommasgirl

New member
Joined
Jul 17, 2011
Messages
9
Reason
Loved one DX
Country
US
State
Ca
City
Roseville
If this is not the correct place for this, I apologize.

Since my Moms diagnosis in July I havent had the heart to post, infact I stayed away for a while because I had a difficult time dealing with it.

I am sure many of you can relate and I really dont know what I am looking for at this point, maybe just to vent?

My Mom lives in Washington state and I live in California. She is my best friend and it tears me apart inside knowing what she is going through and I cant be there for her. She has what I understand is bulbar onset. She has completely lost speech and had a feeding tube placed last week. She is already starting to get week and cant walk long distances or lift.

She sends me text messages everyday with new things and I do my best to be encouraging, give good advise (thanks to this wonderful forum's search function) and talk about things not ALS related. I am sending her my Ipad tomorrow and purchasing the proloquo2go for her (Thanks to my wonderfully supportive husband).

My fear is that by the time I get back to see her in person it will be too late. I want so badly to pick up the phone and hear her voice on the other end. I have so much to share with her. Its not as easy as I thought it would be becoming the parent to my mother.

Is there anyone here that has dealt with the same situation? How do you help from so far away?

You all are so strong and my prayers go out to all of you.

You never know how strong you are, until being strong is the only choice you have.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,226
Reason
Other
Country
HM
Sorry about your mother and the distance between y'all. I don't have any words of wisdom. Just wanted you to know we are here and willing to help when we can. Perhaps others with mothers or fathers in this situation will respond.

Good luck to your family.
 

asantiago

Distinguished member
Joined
Mar 23, 2009
Messages
276
Country
US
State
OK
City
Glenpool
I would say make the trip now don't wait. There will always be a list a mile long of why you can't go now. If you wait there may not be a later time that you can go. Every day that passes is a day you can't get back. I know I'm over simplifying but you will never regret making a trip now but there's a good chance you'll regret if you wait.

Hugs!
 

Josall

Active member
Joined
Mar 25, 2010
Messages
34
Reason
PALS
Diagnosis
12/2007
Country
US
State
OKLAHOMA
City
NORMAN
I can relate to your situation with my mother and it is very difficult. This may or may not help, but buy adding the sense of vision to your comunications you and you mother will feel better. I use Skype and it is free, you can see and talk to the person via your computer. It would require both computers to have a web camera. Very easy to operate once set up. If you leave Skype up on both computers she can click one button and call you and see you anytime. The return on the investment of a computer for her (if she dosen't have one) would be well worth it. I know this won't get you there physically but maybe the next best thing. Hope this helps.
 

CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
209
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
Hi Momma - I left you a little note on your profile, as well. I second the recommendation to not put off visiting. My husband and I have enjoyed many things together and with our families in the last 6 months, because we didn't want to miss out. There will be enough of that later on.

I live in Roseville too and if you ever want to get together, please let me know. My email is [email protected].
Your family is in my heart and prayers.
Love and light
Meg
 

mommasgirl

New member
Joined
Jul 17, 2011
Messages
9
Reason
Loved one DX
Country
US
State
Ca
City
Roseville
Thank you to each of you for your replies. Today is especially hard. She text me that she is on her way to the hospital due to her breathing. I am planning my trip ASAP even though she said she doesnt want to come up yet.

Meg, It is so good to know you live locally and thank you so much for your support. I would love to get together! Most of my friends dont understand ALS and how it can affect the lives of those who have it and the ones who suffer from it.

She is just progressing so rapidly. I cant even keep up with all the emotions. As soon as I think I can start to acept it, something else comes up. Its not even myself or my feelings I worry about, its about how she is feeling and how sad and scared she is. Its so difficult to see such a vibrant, indepandant women deteriorate so rapidly and not be able to take care of herself and theres nothing I can do about it.

My Dad and Sister are there with her and I have full confidence that they will take great care of her, but she tends to turn to me in times of need.

Again, thank you all. Just typing this out helps.
 

asantiago

Distinguished member
Joined
Mar 23, 2009
Messages
276
Country
US
State
OK
City
Glenpool
We are all here for you!

I had the exact same situation. My mom was in Iowa 650 miles from me here in OK. We started to prepare ourselves for the published 3-5 years, and got 4 months so you just never know. I spent most of those 4 months with her and I'm so so so so so grateful I did.

Check into FMLA and do everything you can to be with her now.

Hugs!
 

Lobster

Distinguished member
Joined
Jul 18, 2011
Messages
137
Reason
PALS
Diagnosis
01/2007
Country
US
State
Virginia
City
Near DC
I am planning my trip ASAP even though she said she doesnt want to come up yet.

My mother said that. She had stage IV cancer. She died and I regret waiting to go see her. It has been a long time and I don't think I will ever stop wishing I were there more and at the end.

Your mother wants you to be there.
 

KissJ

Distinguished member
Joined
Jul 6, 2011
Messages
380
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
City
Greensburg
Lobster is right...you don't want to live with regret that you didn't go to her. It is hard, but it is harder to live with the fact that you didn't go to see her. Bulbar issues are difficult and I understand the time is shorter. So, don't wait. She is your best friend, and my mom is my best friend too...I can't imagine not being there with her if she had to face this awful disease without me. I know she would need me to be there.
 
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