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Adele

Member
Joined
Mar 26, 2007
Messages
12
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PALS
Country
CA
State
Ontario
City
Ottawa
Hi Everyone...haven't been here for a while...so much has happened. Last time I was here, my mum was in hospital on so many meds. She wasn't recieving adequate care there & she was brought home. She was still using her communication device with a bit of help, she could move her legs but not walk. That was 2 mo. ago. Now she's in a hospital bed in the livingroom with round-the-clock nurses, a visiting doc has rx as much morhine as she needs (lots) & she refuses to go on a respirator or to hospital. Her breathing worsened last week. She's aware when I visit & able to make a bit of noise, coughs a lot and instead of her usual crying, she now has "that serious look" in her eyes.It's such a helpless feeling, yet at the same time, I don't want her to suffer anymore. I know that her refusal to be intubated means that she wants to pass from this life. I feel like I'm sitting on a ticking time bomb, waiting for "The Call" My stepfather doesn't want to even speak to me or want me to visit much. (Past hurts that he won't put aside). I found out about her breathing from a call from my aunt in England, who got a call from my stepdad. I live in the same city as my mom; I moved across the country to be here. Now, all I can do is wait...it's so hard. I saw her 4 days ago & I'm going to try to visit again tonight...what do I say? I told her how much I love her, how great she is as a mom & I know that she doesn't hold anything against me like my stepfather does. She told me all is forgiven, mos. ago. All I see in her eyes now is that look...the same look she gave me when I first moved here & she was able to verbalize that if she had ALS, then she wanted to die. She was in denial for so long, then she was so depressed & crying all the time. Now she's serious. I pray for her everyday, at mass I light a candle each week, I talk to my priest, I see a shrink every week to deal with this...& still, what can prepare me for this? I've watched a vibrant woman go completely downhill in just one year. I try to look at the blessings: that at least I moved out here & that we got to say things to each other that we may never had the chance to...yet still I'm so scared. Thanks for letting me vent, thank you for this forum of people who understand & I thank God for giving my mom a loving place to be when the pain is all over. And still I'm so scared. Adele
 

Al

Moderator emeritus
Joined
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Messages
7,960
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Diagnosis
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Country
CA
State
On
City
NW of Toronto
Hi Adele. So sorry for your situation. There is not much advice we can give other than to take each day as it comes and know that soon your mom will be at peace. None of us wants to see a loved one suffer but sometimes this process takes time and our suffering seems as bad as any we have ever seen. You are doing all the right things to look after yourself which is good. You need to focus on the the things you have control over and try to forget the things you can not influence.
AL.
 

MtPockets

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Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
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Hi Adele. I agree with AL. You have done all you can do for your mum. She has the proper care and medicines to help her through this as best as is possible.

I'm glad you have your faith to help carry you through this time in your life. Please remember to take care of yourself. Some times we focus so much on the needs of a loved one we forget about our own needs, simple things like eating right getting enough rest, etc.

It also always helps to be able to talk to someone about your emotions and how you are handling things, which it seems you are doing.

You are not alone. The forum is here for you always.

God Bless
Capt AL
 

saska

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Joined
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Messages
93
Reason
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Country
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Hi Adele,

I am so sorry you and your mum have to go through this. I can't add much of anything beyond what the magnificent Grampa and Captain Als posted, but I wanted to let you know you and your mum are in my thoughts and prayers. Of course you are scared...what you are facing is scary.

As for what to say...whenever I am faced with a situation in which I am afraid of a loss for (or the sputtering of too many) words, I pray beforehand for grace. Then I try to say whatever is in my heart. Sometimes in a stammering, far-less-than-eloquent way, but still. Don't worry about saying the 'wrong' thing; whatever you say will be borne of love so how could that be wrong? Also, the time you spend with your mum does not have to be filled with words, your presence alone will be a gift and comfort to your her. Maybe give her a foot massage or brush her hair if she would like. Or just sit with her....

Be good to yourself.

Wishing you peace,
Sharon
 

CindyM

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Learn about ALS
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State
New England
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Hi Adele. I am so sorry this is happening to you and your Mom. Our two Al's have said it all, but I wanted to tell you I am sorry for this turn of events. Go see your Mom as often as you are able. Step Dad will just have to accept this. And spend your time just being there for her. A lot of communication happens when neither of you says a word!

Keep in touch and let us know how it is going!
Cordially, Cindy
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
For you and mum

Just love her over the finish line. Keep talking, keep praying and keep being who you are to her as her daughter. Remember, she is who she's always been on the inside.
If she likes music, play it for her, or to be touched, touch her. I used to take massage oil and rub my mom's feet after washing them.
How wonderful all is well between you both. What a gift for each of you.
Blessings and our prayers for both you, your mum and possibly the healing of feelings between your step dad and you. If not, it sounds like you've done what you can. Leave the rest up to the Lord. Frizzel
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Adele -

You've done right by your mom and, while this is a very difficult time, in the end you will need have no regrets. Have you been offered hospice services? They can help you as well as your mom through this situation.

Best wishes,

Liz
 

Adele

Member
Joined
Mar 26, 2007
Messages
12
Reason
PALS
Country
CA
State
Ontario
City
Ottawa
Thank you

Just knowing that there are others who truly understand is a big comfort. And no, I didn't realize that hospice care was available to me...I'll check it out, thanx. My mum had her eyes closed that last time I was there, but she knew I was there. So many meds & they make her so sleepy. I stroke her hair & gently massage her forearms, she seems to like that. Your'e right, I have no control except to have faith that she passes in peace. Can anyone tell me if she will suffer more as a result of not being on a respirator? I can't stand the thought that passing that way; unable to breathe, will be peaceful. Perhaps the amount of morphine will ease that. I don't know. I have asthma & I know how scary it is when I can't breathe. God Bless you all for your kind words. Adele
 

CindyM

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Joined
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Hi Adele-I am glad you thought to ask about Hospice. Please do it soon, because they wil be able to answer your questions about the end stages of life and they will help make your Mom more comfortable. There is a link that we often pass around here. It is very heavy, emotionally, so I hope it does not disturb you. Maybe you should have a friend check it out first.

Keep in touch and write to us anytime! Cindy
 

hboyajian

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Joined
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Messages
267
Reason
Lost a loved one
Country
US
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Washington
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Vashon
Adele, I am thinking of you and your mum at this very difficult and emotionally painful time. I can only answer your question about passing on without a ventilator through what I know of my father's experience as I saw it. As he became less able to breathe on his own, the carbon dioxide level in his blood went up. This caused him to become lethargic, and eventually to lose consciousness. Gradually, over a period of many hours, his breathing and heartbeat slowed and he passed on peacefully. There was no gasping, choking, or fear for him in this. He was on oxygen through a nasal tube (not uncomfortable or invasive) as a palliative measure. I don't know if your mum is requesting not to have even oxygen. If so, she may not understand that it is not prolonging life, simply easing discomfort at that point. Peace and strength to you as you go through this time. Holly
 

anne

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Joined
Jun 22, 2006
Messages
157
Country
CA
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ontario
City
unionville
Hi Adele, I am so sorry for what you are going through. I want to let you know that you are not alone. This disease is absolutely horrible. My mother has gone downhill so much since her diagnosis June 2006. She has motorneuron disease with bulbar symptoms. Lost her speech, choking, so she got a feeding tube Jan 2007, Easter of this year the stiff neck started and now her neck hangs down. With the neck issue comes breathing problems. She feels like her throat closes. Gets winded by just going down one short flight of stairs or by standing at the counter to wash her face or brush her teeth. Limbs thankfully are all good. The breathing problems at times puts her into a panic state. Not sure what lays ahead for us. Hard to stay upbeat and I have to say I am very scared as to what is coming our way. I am sure you feel the same way. I guess the Lord will guide us through this.

God Bless everyone on this forum. Anne
 

saska

Active member
Joined
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Messages
93
Reason
Lost a loved one
Country
US
State
Colorado
City
Lakewood
Hi Adele,

The description Holly gave of her father's death is the same as how Mike passed. It was peaceful, and I will pray that your mom's passing is peaceful as well.

Sharon
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
My wife and I were present with many more family members when my mother in law, (She was more like a mother to me), passed away from bone cancer, about 1 year ago now. She had fought the cancer for over 12 years and was in terrible pain.

She was in the hospital with a morphine drip, and all kinds of other pain meds to make her comfortable. Each of her children and grandkids that were there went up to her, brushed her hair, kissed her cheek, and prayed over her and we said it's alright Mary, you can go now, we will be ok. We know you are in pain and we all want it to end, we love you, and it's ok to let go. We were giving her permission to leave, if you can understand that? She was almost in a comma, but we all knew she heard us. We of course were all crying knowing what was coming.

Mary had worked for the Salvation Army most of her life and had helped so many people. We knew she was at peace with God and just wanted her to stop suffering.

Her breathing slowed and stopped. The nurse said she's gone, we all began to cry even more and after about 5 minutes she began breathing again. We were all so shocked by this, startled, upset..... We cried even harder it seems. And then about 15 minutes later she quietly quite breathing and was gone.

It's terribly hard for me to share this with you because I am reliving it ever time I tell it. I just wanted to try to give you a picture of what to expect. She never gasped for breath or anything. She was resting peacfully, until the end.

As I relive the telling of this, I also realize that not too long down the road I too will go through this experience and will be reunited with Mary in heaven. Where neither of us will have cancer, ALS, or pain and suffering. We will have a new body and have life everlasting with the Father.

I hope I did not upset you with sharing this experience. I know many of you have just went through this yourselves and the pain and hurt are still there. I pray that somehow you will find peace in your hearts during this time.

God Bless
Capt AL
 

CindyM

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Thannk you for sharing Captain AL. It must be painful to relive these sad memories but I hear a story of a loving family who is inspiring to us all. Bless you all. Cindy
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Thank you for your kind comments

It's funny in a way how reading just a simple kind reply sometimes can make your day and turn the tears loose. Happy tears.

Thank You.

God Bless
capt AL :cry:
 
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