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Punkie65

New member
Joined
Mar 20, 2013
Messages
3
Reason
CALS
Diagnosis
07/2006
Country
US
State
PA
City
Beaver
As I read the stories of all the people that are affected by this horrible disease, I can't hold back the tears. My husband, Frank, has had ALS since 2006, and it was a rapid ride downhill. He lost his voice first, had a G-tube within two months, and because he never signed his living will (I think he was afraid to), I was the one who had to decide on a ventilator 4 months later. Now that I look back on it, I guess I could say I was afraid of loosing him and wanted to do anything (even if it wasn't his wish) to keep him with me & my son.
I have been his sole caregiver the entire time - I could never leave him with anyone besides my sister because I felt no one could take as good care of him as I could. She is an RN who works with long and short term critical patients (thank God we've had her in our lives - she's been my strength through it all).
As the years progressed, Frank had to deal with constant pain, extreme atrophy (he had to have the upper half of his femur removed because the atrophy pulled his hip out of the socket), his eyes became too weak to use his Dynavox Eyemax machine after a few years, and he just passes the time in front of the TV. To move him for wound care and washing (every three days) he had to be heavily medicated. He has to use a rectal and external cathetar since movement is so limited. We had a Hillrom Sand bed brought in after 2 years of pain and bed sores.
Now he has developed an esophogeal fistula, that due to his delicate condition can not be surgically fixed (He has indicated that he doesn't want it anyway). He now has an open bolice on his G-tube to vent the excess air that is sucked into his stomach with each breath and he has been so depressed that all he can do is stare into space, or cry. I have never felt so worthless as I do when this happens - I can't seem to say or do anything to lift his spirits. He is on so many pain medications and depression medication that there is nothing left to try - his doctor has tried everything in his power to make Frank comfortable and less sad.
Our son (16) is a highly functional autistic, who lacks empathy due to his autism, only one friend has remained in touch with him due to lack of communication, and the only other people in his life are my sister and another family friend who fills in when needed. His mother and father are both in very bad health, and rarely visit any longer.
Now comes the hardest part of this story to tell. He has been communicating to me through eye movement and hundreds of questions on my part, that he wants to be taken off of the vent. His physician (he has been a God send, also - so very caring), has agreed to perform a terminal-ween on Frank's behalf. I know it is what Frank wants, and at times during the night when I'm laying alone in bed crying with my heart breaking, I know it is the right thing to do, too.
Frank is so afraid, I can see it in his eyes. I can't imagine what is going through his mind as I try to calmly discuss his wishes. Calmly - what a laugh - I'm a mess.
I knew that he eventually would die, but I alway prayed he would slip away quietly and painlessly by the grace of God. I feel as if even our faith has deserted us.
I pray for all who have been diagnosed with this monster and for those who care enough to tend to them and their needs. Thank you for listening to a very sad wife and mother tell her story to someone who might understand.
Pray for a cure - pray for comfort for all.:(
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I am praying for you and your family. God will not turn a blind eye to your plight. I wish you peace and strength. Wish I could do more. ((((hugs)))).
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
One of our CALS just went through this also. Such a hard decision, but she and her husband are both at peace now.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Keeping you and everyone affected by this horrible disease in my prayers. Truly wish I could do more for you.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Your story brought tears to my eyes. You and your husband are the bravest people!

Only you can really interpret what your Frank's eyes are saying.

I don't think theres any chance you will misunderstand him. Not after what you have been through together these last six years. Not with the love you obviously share. Not with the respect you so clearly have for him.

Wishing you peace. Sending prayers your way. Your faith will see you through.
 

Punkie65

New member
Joined
Mar 20, 2013
Messages
3
Reason
CALS
Diagnosis
07/2006
Country
US
State
PA
City
Beaver
Thanks to all of you for your prays and thoughts - you have no idea how much they mean to us. I wish I had visited this forum long ago, but if I ever had extra time it was spent napping. A friend suggested this site may help, and she was right. Bless all of you!
 

akhopkins

New member
Joined
Mar 20, 2013
Messages
5
Reason
CALS
Diagnosis
12/2012
Country
US
State
florida
City
tallahassee
My heart breaks for you and for all the families that are suffering from this dread disease. My husband was diagnosed in Dec. of 2012, I have cried a river just seeing him go down hill so quickly. He has bulbar ALS and had a feeding tube placed in October even before his diagnosis because he had lost 35 pounds from April until October. We went to doctor after doctor trying to find out what was wrong and then they diagnosed ALS. The feeding tube has been good, at least we can get meds and nourishment in without fear of choking. His diaphragm is becoming greatly affected and we have talked some about a trach, but at this point he does not want one. I will certainly remember you all in my prayers and pray for help for us all.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
His diaphragm is becoming greatly affected and we have talked some about a trach said:
Have you investigated getting a diaphragm pacer? I don't know much about it, but you can search for information on this site. A few members have one. I also saw a YouTube video as well.
 

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
Oh Punkie, what a sad story and how brave and strong the two of you have been. I am so sorry that ALS has put you in this situation, and can only imagine your pain and sorrow. I am sending you a giant cyber hug, and wishes for peace and serenity as you enter this last phase.

Barbie
 

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
We're all weeping with you, Punkie. I pray strength, wisdom, grace, and peace for you.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
I just don't know what to say punkie and can not begin to imagine the heartache your going through.
Your courage and strength not forgetting the love for your husband knows no bounds.
Will keep you in my prayers.
 

judyroyalglenn

Distinguished member
Joined
Aug 28, 2011
Messages
270
Reason
Lost a loved one
Country
US
State
GA
City
Athens
Lifting a prayer up for you and Frank. The Lord will always be there for you:) Praying He will give you an abundance of grace, peace, and mercy!
 

chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
Such a heartbreaking thing to go thru. This disease has no mercy. I see myself declining everyday, but I have told my kids I do not want a vent, just let me go in peace. I have prayed everyday for god to give strength and most,y strength to my children. I think sometimes it is worse for the family to watch their loved one just fading away. My God Bless you and give you guidance during this difficult time. We will all be praying for you, your husband and your son.
 

akhopkins

New member
Joined
Mar 20, 2013
Messages
5
Reason
CALS
Diagnosis
12/2012
Country
US
State
florida
City
tallahassee
thank you for the info, I have not heard of this but will surely investigate if. Thanks again
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Punkie I think Annie's husband Phil said it best when he said we are weeping with you. You have done everything within your heart and soul for your beloved husband. I know that it is almost impossible and unbearable to let him go, but it sounds like you know that the you will soon be saying goodbye. I admire you so much for fighting for him for so long. I am praying for you and your husband. We are here for you when you need to talk. Lots of love and hugs being sent to you, your husband and your son.

Laurel
 
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