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Earthling2U

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Joined
Mar 29, 2014
Messages
7
Reason
Loved one DX
Diagnosis
02/2010
Country
CA
State
BC
City
Lotus land
On this forum Have read,over the years, many of your stories of sad facts, brave humour, sincere support. I thank you for sharing,giving. My dear husband who is completely paralyzed, dependent on bi-pap 24/7, now chokes on every swallow and who's speech is difficult to understand, has established a very-soon date with his palliative care doctor to sedate him enough to prevent respiratory distress for bi-pap removal. After years of his mounting struggles, discomfort, I have come to understand his end-of-life wishes. After years of constant caregiving for comfort and survival it will be so difficult to stand by and witness purposely removing his lifeline. I believe he is sad to leave. Give us strength.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,382
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh I so hear you!

My husband is close except he isn't even on bpap, but he still wants to pursue the struggle, which I support.

But I know that he will also reach this point and we discussed this several times after we were first diagnosed.

I know this will be difficult, but I'm sure that you have watched too much suffering, and know that his strength reserves are gone. I constantly wonder just how I would be, and would cope in the situation of being the PALS. I know what I think now, but I am, like you, on the CALS side of the equation. I am constantly distressed at the way my husband declines a teaspoon a day, and I eat a teaspoon of concrete each day, but it just doesn't toughen me up enough for this battle.

I am sure that if you will work with the palliative team to ensure he is kept as comfortable and fear/pain/anxiety free as possible as you love him to the gaining of his wings, then you will have that to comfort you as you grieve the final loss. We never want our love-one to die, we just want the agony to stop.

Please post here however you need to, the CALS here will give you all the support we are able to.

{{{{{HUGS}}}}}
 
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Annie's Phil

Distinguished member
Joined
Nov 22, 2011
Messages
302
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
MD
City
Eastern Shore of Maryland
Oh, Dear Earthling, all who have or are traveling this road know the agony you're dealing with, and our hearts ache for you. There are no good choices with this disease. Tillie said it well, "We never want our love-one to die, we just want the agony to stop." From the beginning of Annie's diagnosis I knew that all choices rightly had to be hers, and she knew that I would fully support her in whatever choices she made.

I pray peace, comfort, and strength for you both in the final stage of this journey, and for you in the future as you continue on afterward.

-Phil
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
I have always said, I don't want my husband to die but am ready for this to be over. Watching your loved one die a little each day in overwhelming. Please know that we are all here for you as you go through this journey. Peace and strength be with you.

Debbie
 

Earthling2U

New member
Joined
Mar 29, 2014
Messages
7
Reason
Loved one DX
Diagnosis
02/2010
Country
CA
State
BC
City
Lotus land
Thank you all! I am grateful to have discovered new understanding. Tillie your guidance on depending on palliative care team for comfort support is helpful. To have THE "emotionally painful discussion" with your PAL, sad and gut-wrenching dramatic; we understand one another. Phil I am sincerely sorry for your loss of Annie. You did always speak so lovingly of your PAL. Your compassion & understanding come from reality.We take your prayer of peace, comfort & strength to our hearts. Very brave and generous Tillie to articulate such personal thoughts "ready to be over." Yes overwhelming-for I too carry the same thoughts, but now feel a little less guilty. more strength more peace.
Beholden to you all.
Jan
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Sending a big hug--what a hard thing to face. no guilt, it is his choice and a good one that was hard to come to I am sure. One thing about facing ALS, you are always thinking about the end, wanting it over but not wanting it over.

peace to you both. and to all of us here.
 

Earthling2U

New member
Joined
Mar 29, 2014
Messages
7
Reason
Loved one DX
Diagnosis
02/2010
Country
CA
State
BC
City
Lotus land
Thank you Barbie. Yes peace to all. A semblance of such can be found here amongst kind and caring people such as yourself.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
You and your husband will be in my prayers, and I know he will have a love filled peaceful end, and that is all any of us can wish for. It is so difficult to have those end of life discussions, as I am so afraid my husband may thing that I want him to die, and I don't, but it is something that should be discussed. My husband has a storage compartment full of belongings that we were going to bring to Canada when he got his permanent resident status, but we have finally come to conclusion that this will not be very practical. Most of it is his tools and precious family heirlooms, and I believe that they should stay with his family, when he is gone. He has decided to give all his tools to his eldest son, and share the other things with other family members now while he is still alive. He won't be able to use them again and he can see the joy they give to those he loves.
Any way, we are all here for you.

Paulette
 

Pkmado

Active member
Joined
Aug 11, 2012
Messages
48
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
Your post has reached in and touched my soul. May Peace be with you.
 

LoveMyBoy

Member
Joined
Mar 23, 2014
Messages
11
Reason
CALS
Diagnosis
06/2011
Country
AUS
State
ACT
City
Canberra
Dear Earthling,

A big hug from me too. We all know where this journey ends and all we can do is make sure that our loved ones are surrounded with love and are kept as comfortable as can be through that final stage. I am sure that he is sad to leave you,

Peace and love to you both,
Deb
 

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
You live on after your loss. Don't stop giving you love.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
Jan, the most supportive words I have been given through our journey with this disease came from dear friends father whom is also a Deacon of the Catholic Church. Smiling he said,"dear we all have a ticket Home, when I was diagnosed with cancer my children(8 of them) had all sorts of plans for what I needed to do, but I told them it is my ticket Home, and we all have one." Telling him that my darling had AlS was one of the few times I have shed tears about all this. The big gentle Deacon was laid to rest yesterday. He bravely faced bone cancer and last week told his wife he had his boarding pass and was ready to meet his Lord.
I watched her the last 3 days smile and comfort all the people her husband had touched through out his life and pray I have her grace, faith and spirit when the time comes.....
be blessed with peace of heart
 

Earthling2U

New member
Joined
Mar 29, 2014
Messages
7
Reason
Loved one DX
Diagnosis
02/2010
Country
CA
State
BC
City
Lotus land
I am so moved with the sentiments that you have all put into your words. Please know that they all do comfort me and my PAL. We take your thoughts to heart and find you have given a certain level of solace for our souls. You all give a lightening, a freedom with your kindness. Yet I sob in sorrow as the end approaches.
Jan
 

texastracy

Distinguished member
Joined
Jul 27, 2013
Messages
497
Reason
PALS
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
This is my prayer for all of you:

Heavenly Father,
As always, I thank you for the day you have given all of us. I also thank you for the rain you have sent to the dry areas of Texas today.

Please be with the families of all the people in this thread. I ask that you be strong in their hearts and souls as they travel through this journey you have given them. Though we don't always know your plans, we know you support us as we fulfill them.

In Jesus's name I pray,
Amen
 
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