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Citlalli

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Joined
May 25, 2007
Messages
26
Reason
CALS
Country
Mexico
State
Morelos
City
Tepoztlan
Hi all... I've been away for a while. Things have gotten more complicated here. My husband Andres has had a very fast energy loss in the past month along with taking the decision of letting go of eating through his mouth. He has a feeding tube but he would have a little juice or chocolate milk, which took about 2 hours.

This week he is feeling exhausted and has been staying in bed most of the day ( for the first time since this started 6 years ago.

I read a post about shallow breathing, he has that and finds it difficcult breathing at night, and also during the day. He is not on bi pap and does not want one. He was at 30% a couple months ago. We have been in intense spiritual preparation for his journey and are now deepening our retreat and dedication. I guess I want to know what could happen, will he stop breathing in the middle of his sleep? Have we run out of time?is this the end? I know one can never know what to expect...

I don't even think I know what I am asking here maybe I just need to connect. I get scared that I wont be aware of his passing or that it could happen suddenly like right now while I am at the computer or doing whatever thinking he is OK.

What will be will be... but we do get so attatched to things happening like we want them to. Even death.

Thanks for listening
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Oh, Citlalli, Bless your heart! How well I remember when my son passed here at home. Stay close to him, because it could happen when least expected. I really thought that my son was going to be around a little longer, and boy was I wrong! He went down fast at the end. He started doing exactly what your husband is doing, such as not wanting, or not being able to eat. My baby, I remember when I was helping him with his Ensures, I tried so hard to help him. I really wanted to help him, but God, he started breathing different, he was losing strength big times, he had no volume at all. It was so sad. That Saturday evening when I started to rub his legs to massage them, his feet were ice cold, from his shins down, they ere like ice. Girl, I panicked. I called my other son and asked him to come home at once, and to call everyone. It's a long, sad story, all I can tell you is that he passed the following day at 5:50 PM. The worst time of my life. I felt like I had died, too, the only difference was that I was still breathing and moving. This disease is bad May God bless you. Let us know. May he go in peace. Take care, sweetie

Irma
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
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US
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Arkansas
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Scott
We are here for you....

Citlalli,

Please know that we are all here for you, praying for you and your husband. I pray you get the strength you need to make it through this very very difficult time. I pray your pain is eased as well as your husbands pain, physically and mentally. I am so sorry you are going through this right now but your husband is so very fortunate to have such a wonderful dedicated wife like yourself that has stuck by his side through everything so gracefully.

Praying for you and sending many hugs your way.
Michelle Thomas
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Dear Citalli,
He is so blessed to have you there for him at a time like this. I wish we could do more to help you. All I can do is offer a hug in the form of a picture, from the one we all need a hug from at a time like this.

God Bless
Capt AL
 

lak48837

Member
Joined
Mar 3, 2007
Messages
10
Reason
Loved one DX
Country
US
State
MI
City
Grand Ledge
Citalli,
Hang in there! I am so sorry this is such a tough time for you and your husband. He is fortunate to have you and you him. Embrace each other, love each other and trust in God. It's difficult facing good bye and I certainly understand as I lost my Mom a little over a week ago. I will remember you and your family in my prayers. God Bless.
Laura
 

CindyM

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Learn about ALS
Country
US
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New England
City
Anytown
Hello Citalli, So sorry you are going through this. I am helping my Mom say goodbye and know how tough this transition can be. Take extra care of yourself during this difficult time. hugs, Cindy
 

trustinggod

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Joined
Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
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CA
City
Lake Forest
Hi Citalli,

You are in my prayers and in my heart tonight. I am terribly sorry that you are facing this sad time.

Do you have hospice in place? Have you been trained on how to give the comfort meds?
Linda's lung function numbers were in the mid 20's when she started to struggle with getting enough air and having the C20 build up. It started on a Monday night slowly then on Tuesday morning we started giving her small doses of the anti-anxiety meds which really helped her relax and not feel so panicky. We made sure to give the meds every four hours to keep her comfortable. After about 24 hours we needed to add the morphine (drops under the tongue). By Thursday afternoon we needed to increase the amount we gave her to keep her comfortable. She was able to visit with her family and friends and dictate letters to those people who could not get there. We read her favorite parts of the bible to her, sang songs and basically camped out in her room keeping her company until she quietly closed her eyes and took her last breath. It was very peaceful. Very sad and hard too but we knew she was no longer suffering and our faith in knowing that we'll see her again in heaven one day helped alot.

My advice to you is be sure you know the signs to watch for and get comfortable with the meds or find someone who is and keep them near. Don't be afraid to ask someone
to stay with you for a few days. I moved into Linda's house those last three days and slept on the couch across the hall from her bedroom so that I could hear her and give her the meds round the clock. Her husband was able to just be with her and not worry about anything other than spending those last precious days with her.

May God be with you and give you peace.

Sincerely,
Jeanne
 

lunarruna

Distinguished member
Joined
May 20, 2006
Messages
145
Reason
CALS
Country
US
State
xx
City
xxxx
Citlalli...
You are doing all the right things and your love for Andres shines through. You two seem as well-prepared as anyone could be for this difficult transition.

It seems many people go in their sleep, or quietly stop breathing, others experience stress/anxiety related to the inability to breathe. I know that Andre doesnt really like to use medicines, but I am sure he has techniques to deal with stress (meditation, herbs)...if you can talk with him now about how he would want to handle this possible stress toward the end it may help you be better prepared.
Also, I would think it is time to go ahead and say whatever final words and thoughts you have for/to Andre...and that way if he passes while you are not right there, you wont feel that regret.
I'm sure I am not telling you anything you dont already know. I am thinking of you and sending you both comfort during this time. Stay Strong...
With Love,
Beth (former CALS to husband Shannon)
 

brooksea

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Sep 27, 2006
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HM
Citalli,

I am praying for you and your husband. God Bless.
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
Hi Citalli,

I too am sorry you are facing this now. LB went down very fast the last two weeks. The blessing with him was the day before he died we spent the day out doing things. Not that he was able but the fact that he did not just want to sit around. All day he kept getting weaker but refused to give in. I think he was trying to leave good memories. We had talked about that previously. Although he only had a little movement in one hand we could communicate that way. He touched my right hand for yes and my left for no. That night when I put him to bed he was doing very poorly. It worsened all night. In the early morning he just simply quit breathing even though he was wide awake. Until five minutes before we were communicating with hand touch. He was in no pain, just uncomfortable, never did require pain medication. I will always be thankful to our Lord that he did not seem to have fear but peace.

Take care.
terri
 

stacey76

Member
Joined
Sep 19, 2007
Messages
13
Reason
Loved one DX
Diagnosis
n/a
Country
US
State
sd
City
Sturgis
thinking of you and learning

Citalli,

I read the things you write here and wonder when I will have to go through it and if it will be the same but I think my fiance will be the type to have a lot of anxiety with the breathing issues as anyone would ....I could not imagine going through that.
One time when he was in the hospital and they were hydrating him they hydrated too much and his eyes swelled shut over night and when he woke up he was hollering for me ...very scared and said "What's wrong with me?!" I can't see!" he had so much anxiety from that until I told him what had happened. He is so desperatly scared ...I see it all of the time but he does not always express it to me and actually will often hide it from me trying to be strong.
I am thinking of you and your husband often Citalli and I am so sorry for the pain you and your husband have to endure physically and emotionally.
Stacey
 

JACKIEMAX

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Joined
Jan 22, 2007
Messages
159
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TN
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Baxter
When It's Time To Go...

I Have Read All These Responses About Andres' Decline. I Have To Agree That Anything That Needs To Be Said Or Done, Do It Now. 20 % Lung Function Is Very Very Dangerous. I Do Not Understand Why He Is Not On A Bi-pap Machine.

My Husband Was Put On One Almost Immed, Then When His Breathing Got To 50%, They Put Him On A New One That Actually Breathes For Him While In Use. But,..... That Will Not Keep Him Alive When The Time Comes. I Had Read That 90% Of All Als Patients Die In Their Sleep. I Researched This And Was Told That It Is Bec. They Get So Tired, Weary, And Exhausted That They Sleep A Lot, And That's Why They Die During Sleep. But, Dear Friend, That Will Be A Blessing.

My Husband Expressed The Other Day That's How He Wants To Die. He Does Not Want Me To Have To Watch Him Struggle, And He Does Not Want To Be Aware Of What's Happening.

His Breathing Gets More Shallow Every Day. He Has A Special Spoon And Fork To Use As He Has No Grip In His Right Hand, And Very Little In His Left. He Has A Feeding Tube, But Is Not Using It At This Time, But We Never Know When He Will Not Be Able To Eat On His Own Anymore.

Please Know You Are Loved Here And In Our Prayers. This Same Thing Is Going To Happen To All Of Us Caregivers.

Jackiemax
 

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
iam so sorry

hi my name is jenny and iam new and i cant even imagine what you are going through this difficult time right now, i just lost my daughter at 12 days old nd it was the saddest thing ever. you are such a perfect wife you hang in there and keep me posted jenny
 

Citlalli

Member
Joined
May 25, 2007
Messages
26
Reason
CALS
Country
Mexico
State
Morelos
City
Tepoztlan
Thank you

I want to thank you for all your messages. We are in a very intense space now. We had a little party where all of Andres childhood friends came to say goodbye. The next day ( sunday) he did not get up from bed. It seems he wont anymore, he has no energy.

The reason he does not have a bi pap is that he does not want one. It has been 6 long years and he has had enough. He is not afraid at all. So peaceful and ready. He is uncomfortable in his body, with position related pain. But there is no gasping for breath or anything like that. He is just so very tired and sleeps a lot. He feels very week and today told me again that he feels he is about to die. I am very, very sad, and fear only for me, the loss. I am so not worried for him.

We had a ceremony last week in which we became buddhists ( officially, we have been for a long time) and you get a buddhist name. His means Good Fearlessness, and that is exactly how he is. By the way, I am Disciplined Warrior, and the other night, when I was turning him around in bed, I thought, yeah, that is what I am, too, and I am sure all of you caregivers out there are too. Just know you find the courage and whatever you need along the way. Every step prepares you for the next. And though I used to feel like a little ant in front of the ocean whenever I though of this time, I now feel ready to cross it. Though I am filled with sorrow. I am open. I am letting go.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
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Learn about ALS
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New England
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Anytown
Dear Citlalli, you are proving that these challenges can be handled with grace and courage. I wish you peace and serenity in this hour of great sadness. Cordially, Cindy
 
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