Your thoughts on how your coping with dying

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Mndsuffer27

Member
Joined
Jan 20, 2012
Messages
27
Reason
PALS
Diagnosis
06/2010
Country
Aus
State
Wa
City
Perth
Hello all

I'm getting closer and closer to the end and having to tie up lose ends(plan funeral .. The will etc) I'm getting more used to the taboo subject of death and talking about it with my wife and the rest of my family. The scariest thing for me is the unknown .... What happens after I die and all that. I'd like to see how other people are reacting since we have a lot of different ages, cultures and religions. Trying to do my own funeral well not do it but trying to decide what i want. I'm currently going through the process of getting my life insurance and super paid out which feels weird being only 28. My wife has helped me so much and held my hand while I've gone through this process.

Thank you your responses
 
It's hard isn't it. I received bad news from my pulmonary doctor this week. We made my funeral plans 2 days ago. It was very difficult. I thought I had more time since I was just diagnosed 3 months ago. It seems that I have skipped through everything & went straight to respiratory failure.

I am so sorry that you are having to go through this at 28 yrs. old. That is so young and not fair at all.
 
We were all given a death sentence from the minute we were born. Everyone is going to die. It is what you do in the middle what really counts.

You are born [---MIDDLE---] you die.

I believe everyone should take each day and live it as if it was your last day on Earth.

Enjoy your family and friends. Smell the flowers watch the birds and squirrels play. Make happy memories for each other, you, your husband and/or wife, your kids, your loved ones, your friends.
Lay on the ground and count the stars. Do something silly and just laugh. Just enjoy whatever it still left and take one day at a time.


Just my 2 cents here.
 
Last edited:
Carlos,
Your 2 cents are always worth a million :grin:
You are so right. Thanks
 
Well said Carlos
 
I never really use to think about dying my husband use to tell me I would live forever because my one grandmother was 95 and the rest of them including my parents was 87 to 89 years old. Since I have been diagnosed I have lost several friends and none having als one guy was at his mailbox getting his mail when a car hit him so with als we are given a warning that other people don't get. So dying to me would be a blessing some days, then other days I am glad to still be here
 
I think our society has it so very wrong. We deny aging. We deny death. It's such a disservice to ourselves.

For myself, it's not so much about the going - it's about the leaving. Leaving behind those I love the most. That's the hardest. Of course, the manner in which ALS will have me leave this place is daunting; there's no escaping its torturous path. By the same token, I am humbly grateful for the gift of time which I've been afforded to make things right with my world. Mending fences, forgiving and seeking forgiveness, listening more thoughtfully and hugging more honestly.

In a bizarre twist, I would sincerely opt for this road rather than dying suddenly with words left unsaid, promises left unkept and stains on my soul.

I pray for strength. I pray to face my ALS with love and patience. I pray that I will be worthy to bask in the light of God's love.

Am I scared? You betcha. I pray that I won't be scared when it's my time to leave.
 
Couldn't have said it better Carlos. Elaine, I think you have nothing to worry about Your soul is so beautiful and shines so brightly already. I am sure God will welcome you with open arms and I think Sharon will be there too. Only not to soon, we still need your light here.
 
Thank you for replies, I agree with the shell shock period. I'm scared of leaving behind my wife and family but my wife is so strong that I know she will be fine.

Stay strong and don't stop smiling
 
I am 66 years old but always felt and looked younger then my age, so I was told. Of course since this disease took over my body I look horrible, face sicken in, all facial muscles have atrophied and bottom lip just hangs there. Not a pretty site, but I am now not so worried about my looks anymore, I am more concerned with spend time with my kids and grandkids and taking advantage of every minute I get with them. I planned my funeral not long after I was diagnosed. I went by myself, and I thought I would freak out, but I didn't, I ididnt cry or nothing. I have made my peace with God, but I must say I still have the fear of dying, I suppose the unknown. I've always had this fear of them making a mistake, and Im not dead. Told my kids make sure I'm cold before they take me, morbid I know, I am now 2 1/2 years into this and have bulbar and I know that is not good, but I try not to think about the worse coming and death, I just go day to day and try to make the best of each day. It's in Gods hand, and there is nothing I can do, short of a miracle happening.
 
I agree 100% with Carlos....I'll throw in the old saying that there are only two guarantees in life, "death and taxes"

As Carlos said, live every minute as if it's your last. My wife and I just got back from a nearly 3 week vacation and we made as many happy memories as we could. I took as many scenic routes as I could find and we took 100s of pictures. There were plenty of less scenic drives when we talk about our life together and how fast time has flown by.
Since we've been back, we discovered, well we knew all along but....that home and local stuff is just as memorable as taking road trips.
So the vacation hasn't ended for us, it just changed locations!

I do fear leaving my wife and family behind, but I have done and am still doing, everything possible to ease my burden upon them later.
A couple of months ago we bought our burial plot in a local cemetery, just across the road from where my Dad is buried. It really got me thinking about how much we don't plan, or don't want to plan, the dying part of life.

I heard a quote from Billy Graham....he was asked if he feared death. His response was, "I'm not afraid of death, but it's that dying part that has me concerned."

For me it's the promise of eternal life in Heaven.....another old saying, "everyone wants to go to Heaven, but no one wants to die getting there!"

Joel
 
@jellis86:

Great post.
My exact thoughts. That's the way life is meant to be lived regardless.

Take care.
 
It will be hard, but I am thinking by then a relief.
 
If i can add to this conversation, I'm reading Yogananda's books.. and i want to share a quote and talk about it.

"At death, you forget all the limitations of the physical body and realize how free you are. For the first few seconds there is a sense of fear — fear of the unknown, of something unfamiliar to the consciousness. But after that comes a great realization: the soul feels a joyous sense of relief and freedom. You know that you exist apart from the mortal body."

I do believe this happens.

Years ago i endure a septum surgery that went wrong, i couldn't move my body as i was totally weak... i felt scared, hopeless.. Then, before reaching to the hospital with my body unable to react... i just looked at the clouds. They were so beautiful and perfect... The sun wasn't that hot that day but i remember saying: I'm prepared.. Take me God, i want to be there now.

That wasn't my time to go as the doctors got all my vitals up... but, for that moment i didn't fear death... That moment was the most peacefull moment i have ever had in my entire life... It was perfection, it was the freedom from every burden life gives you...

I conclude saying that every PALS journey is different, the mayority just want it to be over soon... others want to be alive as much to see their kids and/or grandkids grow... but in my humblest opinion ALS itself is a Hell. Hence thinking about certain death might be scary but, when times up (and we don't know when that will happen) i'm a firm believer, evey PALS will fear just the necessary and then... we all will cry tears of Joy as the body is a garment but our Soul won't die and will be free...

Much Love

Jon
 
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