My father has been diagnosed with ALS

Otumanova

New member
Joined
Jul 28, 2020
Messages
0
Reason
Loved one DX
Diagnosis
06/2020
Country
CH
State
GE
City
Geneva
Hello there,
I am new to the community. My father has recently been diagnosed with ALS. He is already 73 years old, and while unwilling I have been struggling with the idea that eventually he will die. Now that I have learned of his condition, I have been troubled mostly with the fact that he is a man of so much knowledge and strength, and watching his body deteriorate while knowing his mind will remain intact has been the biggest struggle for me.
I understand that the condition is incurable and inevitable, but I just want to understand what I can do for my father during his remaining days, months, or years. We live apart, a 3 hour flight (which now with covid is made harder). I just, i guess, am looking for some support and closure. From those who are away from their affected other, and who are as scared as I am for their deteriorating condition. Any advise and help and truly welcome.
Thank you so much in advance. My heart is with you and your families and I hope utmost for a miraculous recovery, but in the unlikely case I wish them for a painless and happy passing and great happiness and relief in the beyond.
Love, Olga
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
A sad welcome, Olga. May you find support and help here.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,460
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Sorry to welcome you, Olga. Your father might have some projects you can help him complete, or simply encourage him, on your video calls. He might have more memories or feelings to share, or likewise pursuits and content that you both enjoy, from following politics to music or art. Of course, you will want to help with assistive technology such as mobility devices, comforts, and any services that can help him remain active for longer, but just being a helpful/engaged daughter in the same respects that you have always been, can also be very gratifying for both of you.

On the practical side, you should know his wishes about the end of life, and for your family's future.

Best,
Laurie
 

Elkhorn3

Member
Joined
May 24, 2020
Messages
15
Reason
CALS
Diagnosis
05/2020
Country
US
State
MT
City
Helena
Welcome, Olga, to a community that understands everything you are experiencing.

Yes ALS is devastating and really hard on everyone. But it also brings the blessing of a fairly long time to share love, memories, meaning, laughter, and vulnerability together as a family. This is the time to enrich your relationship, ask questions about his life and family, and let him know how much he means to you and the world.

There is no right or wrong way to go through ALS. Everyone is different, and clearly you're a thoughtful person. You will find your way.

To me, this is a time for love, for sharing, for listening, for just being there for him. And let him be there for you, too - no heroics, let him love you through this too.

You've found a great support network here of confidential, experienced, good people who will send help, suggestions, and shared experience. Welcome.
 
Top