Near the end

[Citlalli]

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]

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]

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]

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]

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]

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]

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]

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)

[jimercat]

Citalli,

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

[terri]

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]

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]

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

[scared of als]

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]

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]

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

[l2c]

Citalli, only those of us who have the person we love most in all the world can understand where you are right now. My husband said from the start that he would accept whatever came and never say "why me" but sometimes even he become discouraged and I ache to see him become weaker and more physically uncomfortable as the days progress.

I thing my husband like Andres will have a peaceful and prepared death but I'm not so sure I can be as brave.

[CindyM]

You will rise to the occasion with grace and dignity when the time calls for it, l2c ! Cindy

[JACKIEMAX]

I Layed Down Today For A Few Min. Waiting For My Great Grandson, Age 7, To Come By So I Could Keep Him While His Mom Ran An Errand. Horace Was Asleep In Our Bedroom With His Bi-pap On, And My Thoughts Wandered To Something We Talked About Last Night.

He Said 'i Worry About You Being Alone', And I Told Him That I Had A Lot Of Friendss, Family, And Church Friends. A Good Support Group, And Please Don't Worry About Me. I Told Him, 'there Will Come A Time When You Won't Want To Be Here On Earth', And He Shook His Head Yes. I Think He Feels That Way Right Now.

So, As I Lay Down On The Couch I Imagined Trying To Awake Him Some Morning, And He Would Not Wake Up. Just Thinking About It Brought Tears. We Are All In This Together, And We All Feel Pain For Each Other. Let Us Not Forget Each Other's Sorrows And Pain, But Keep Us All In Each Other's Prayers.

Jackiemax

[MtPockets]

I know it easy for anyone to say I feel your pain, but I truly do. I could not gt out of bed this morning, so my wife had to get the voyager lift out and strap me in and dress me, lift me up, and place me in the wheelchair. I would have stayed in bed but I had to go the Doctor today.

I thought about the time when she would find me not breathing one day, maybe sooner than I think. I also thought about maybe writing her out a list of what to do when,,,,,,,and put it in my pill box. So that when she is so stressed, she could just follow steps, 1, 2, 3, 4 etc. And not have to really think about what she was doing at the time.

Ladies, what do you think? Is this something I should do or not? I need you help.

God Bless
Capt AL

[l2c]

Capt Al, I know I would appreciate it. I asked Don the other day if he would give me a list of some of the things he accomplished in his career. He printed out several resumes he had. I wanted them because I can't remember all the building projects all over the world that he was involved in but his accomplishments should be remembered when he goes.

I know I have to sit down and talk with him about what he wants re: wake, church music, burial etc. It's hard to bring up the subject though without having him think I expect him to go soon.....which I pray he doesn't!

[CindyM]

I'd do it along with talking about my own plans, so the kids will know what to do if you both die in a crash, for example. When somebody is sick, the earlier you have this conversation the easier it is. At least this is what we found out with my Mom.

BTW, I have started 2 files for the kids. We each have a folder with awards from work, Lee's certificate from the time he won a road race, and so forth. I put in any photos I could find, clearly labeled on the back with subjects, place, and year. And old resumes, of course. Cindy

[terri]

Hi Al,

Maybe I misunderstood your question but I am thinking you are asking what would help your wife if she found you in bed after you had already gone on to Heaven. If I misunderstood forgive me. The answer is yes leave a note on the front of the phone book or some place she won't have to think where it is. I would put the names and phone numbers of your doctors on that list too. The person responding to your 911 call will need them. If you should be on Hospice that is the only phone call she will have to make. They will take care of the rest. If not, she might turn into mush like I did. I knew what to do and just couldn't do it. I had called my sister who does not live far away about 45 minutes before LB died. If she had not come, I might still be standing beside his body today wondering what to do! It's amazing how easy it is to forget what to do in time of stress.

Take care Al, your wife is blessed to have you.

terri

[MtPockets]

I was thinking of more immediate things to do, because of the shock factor kicking in. Like:
1. Call your brother to come over immediately, he can do most everything that needs to be done since he is a Police Chief.
2. Call 911 and ask for an ambulance. Explain you just found your husband not breathing and he had ALS.
3. Leave the room I am in until your relatives get there to help you.
4. Don't try to clean me up. (She does not need to being doing that, it will be in her mind forever)
5. Let yourself grieve, cry, whatever. Don't hold it in.
6. Remember I am not in that shell of a body. I have gone on to heaven.

Things like this, maybe some I have not thought of, to help her get through the first hour, day etc. If you can think of anymore to add to the list please let me know.

We already have the will, insurance, necessary papers filed where they can easily be reached. My funeral has already been planned. Just concerned about helping my wife get past the shock phase with this.

God Bless
Capt AL

[CindyM]

Sounds like a great list, AL. I bet she will appreciate it and cherish it always. SO like you to be thinking of others at every step of the way! Cindy

[liz]

Sometimes I think about leaving a packet for each of my kids but then I think, nah, that would be like haunting them. Don't know yet what I will finally decide to do with this.

Anybody writing their own obit? This I will do as a favor to save my husband the trouble and to make sure nice things are said about me. :-D

Liz

[CindyM]

LOL! Thanks for the giggle, Liz. Cindy

[JACKIEMAX]

my husband spent one entire day on the phone calling each of his ins. companies, calling the State of CA where he retired after retiring from the Air Force, to make sure what benefits i would be receiving, and he wrote down all their phone nos. for me, making a list of the information i would need for financial benefits.

he wrote down his bank accounts, and which bills came out automatically on each account. he encouraged me to use the ins. money to buy cd's to come due yearly month after month until it was gone.

he wrote his own obit due to the fact he was in the Air Force and he and i have only been married almost 7 years.

he has selected the funeral home, preachers to preach at his final service, one being my older brother, and ask me to choose the hymns.

he wants a military funeral, and there are a group of veterans in our town that does just that - serve at veteren's funerals.

and so, Al, anything you can do to help her with these things will be a blessing, and i assure you, when the time comes, i will be a basket case, and will not remember a thing i should do.

i hope this helps some of you.

jackiemax

[califsand]

Al, my father has planned his entire service and in fact, his tombstone is already carved except the date of death... he bought his plot in 2004 and had me take him to the cemetary so he could lay on it "to make sure it fits"! For my father to accept the inevitable, he had to do this... my siblings don't know all of the details but they are extensive. He has even arranged with a friend to sing the song "Groovin" at his graveside services, wants us to wear shorts and drink cocktails afterwards. When my father goes, I will know exactly what to do without thinking, because he has emailed me the details SO many times and made me recite to him what he wants. Although it seems a bit macabre, I am grateful that he did this. It was hard as hell during that time, hard for me to keep a straight face and be strong, but he has the peace of mind knowing that all of the details are set, including exactly who should be there and who shouldn't.

Making a list for your family would be a great thing and it will give you the peace of mind knowing you did that for them and that whatever wishes you have, will be followed.

[Icanmanz]

Al, it saddens me to the core to read these posts. These posts drive me to tears, seriously, because I've been there. What you are thinking about doing is a great idea, and I'll bet your wife will feel you standing right next to her. She'll kiss that note, hold it to her heart, and your presence will be felt! I feel my son's presence all the time. Everything he touched I touch and give it a little kiss, and it makes me feel like he is standing next to me. A loved one will NEVER be forgotten!! May God bless you and your family!

Irma

[Icanmanz]

Liz my son called me to his side on a Saturday, June 2, 2007, and gave me a list of who he wanted as pall bearers, he talked some about how he wanted his service, the video, the pics, the music, and on Sunday June 3rd he passed at 5:50pm. Talking about being hit on the head with a sledge hammer!!!! I wanted to die. I was expecting for him to be with us at least another 6 mos to a year, but when it happened I felt like I was left holding the bag!!!!! Liz, I WANTED TO DIE, too!!! I learned not to be afraid of death, and I am not. Before my son's illness it was a different story. His illness and his passing made me a brave person. It strengthened me. God bless you, dear!

Irma

[Icanmanz]

calif, that is a neat idea! There is nothing wrong with that. Your dad must be a "cool guy!" LOL My son's funeral was different from other funeral we have had in the family. We invited everyone, lots and lots of people, friends, exes (sp?). I was in charge!!! LOL I told everyone I wanted no beef (trouble), no pictures taken, no bs talk about my dead son. I warned that whoever crossed those boundaries were going to be ushered out. I had 3 guys keeping everything in order. It was nice, very nice! A long video with nice gospel music, some classic, some Rock. I picked 3 songs for him. It was really nice. My son's viewing was from 12:00 noon to 9:00 pm. I was there the whole time. My other son's friend owns a clothing store, and made lots of white T-shirts in memory of my son, with lots of pics in front of the shirt. His name, and dates of sunrise and sunset. The next day of the burial was just as nice. I wanted him to have the best, a cool, something different. Gosh, this is too lengthy!!! God bless!!!

Irma

[mrstadpole]

Citlalli:

I hope I can be a strong as you are when it is my dad's time to pass. I haven't been a member of this site for very long; but I have read many of your posts. You are a very brave woman and I envy you in more ways than I can explain.

Your husband is a very lucky man. May you enjoy the rest of your time together... even in the silence while he sleeps and you look on.

Kari

[MtPockets]

Thanks so much for all of your great ideas. I am going to combine them all and get busy with what has to be done, while I am still functioning. Talking about my body, not my mind. :-D :-D

Since my last name is Marble, many say I lost my marble's a long time ago. Do any of you remember playing with marbles as a kid? We had our favorites the shooter, the cats eye, and the big ones. I played so many games in those days I wore the knees off my jeans in the dirt. It was great fun. We would win everyone's marbles then give them back and start all over. I guess by todays standards, kids would be bored to death with such a game.

Remember using clothes pins to put baseball cards on the spokes of your bike to make it sound "cool"? Playing with yo-yo's, hula hoops, awe enough of the goods old days. :cool:

God Bless
Capt AL

[CindyM]

Hey Al- I was the hula-hoop champion of our neighborhood. :-D Cindy

[MtPockets]

Oops, Cindy... You may be revealing your age.

Do many of you remember any of these: :-D:-D

78 rpm records, $.05 Cokes, gas station wars where we bought gas for $.18 a gallon and collected empty coke bottles along the side of the road for the $.03 refund, so we could buy enough gas to go to our friends house where we would play records and dance until 10.00 PM when we were expected to be home. We would often do the limbo dance to see how low we could go. We were always expected to say Yes Sir, and Yes Ma'am, and if not your dad tanned your hide.

The evil drug of our hippie days was weed. If you were really rebellious you might try to get some beer. Tie dye, Madris, and Hawaiian shirts were the rage. Girls ironed their hair and the boys had crew cuts.

Such were the days of our wild streaks. Oh yeah, streaking. :oops:

God Bless
Capt. AL

[califsand]

Since my last name is Marble, many say I lost my marble's a long time ago. Do any of you remember playing with marbles as a kid? We had our favorites the shooter, the cats eye, and the big ones. I played so many games in those days I wore the knees off my jeans in the dirt. It was great fun. We would win everyone's marbles then give them back and start all over. I guess by todays standards, kids would be bored to death with such a game.

Al, I was the tough little tomboy who won all the marbles...only we didn't give them back! My older brothers would bring me in as the ringer when they lost and then I would kick butt and all the older boys would be soooooooooo embarrassed!

We also did the spokes and playing cards in our bike tires, and ate pop rocks with coca cola! ;)

The other stuff was a bit before my time (I'm 36) :D

[CindyM]

Well, I am old enough to remember my Grandmother's old fashioned round cylinder victrola. It was an antique then but she still played it once and awhile. Cindy