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Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
I've been avoiding this website for the past week. My father died Monday morning, 12/10 at 7:10 AM. I was with him when he took his last breath. A month or so ago, I thought he seemed like he could go on forever the way he was, but he rapidly declined the last month. He was to have a neuro appt today. At the end, he could not speak. I took the time to spend with him to decipher what he was trying to say, but most of my family did not. I know I thought life would be much easier for me and for him if he were to be released from his misery, but I sure don't feel the relief. I wish I could have another day or week, etc. I was his main caretaker for 2 years--every day. I was the only one who moved him.

6 days before he died, he called me at 12:30 AM. Even tho he had not been able to speak on the phone lately, or even get a call made, he somehow managed to get me on the phone and say 3 word "I need you". I immediately went over there, and he said he didn't know what it feels like to die, but he thinks he's dying. I said "Do you mean in general, or like tonight or tomorrow?" He said "Tonight or tomorrow." He wasn't able to explain why he felt that way, but he told me how much he appreciates all I've done, and he could never be able to repay me. Now, mind you, this was a huge effort for him to say, because his voice was gone. On Saturday, I could sense the time getting even closer, so I told him I would still have done it, even if I'd known it was going to be like this, and that I know I could have stopped at any time but wanted him to be able to be at home like he wanted.

The night before he died, I asked him if he would like me to play the piano for him, and he gave me a slight, tiny bit of a nod, (all he could manage) which I knew meant yes. I didn't have any music, so I just played hymns for him by ear. He was a musician, himself. He didn't read music all that well, but had a great ear, and could just play and play. My problem now, aside from missing him, is that I keep thinking of specific times (there were only a few, bit still...) when I was impatient with him, and it sounded in my voice. He was never able to help his condition, but I did have some times when I was annoyed. Those times didn't last too long, because I can often "get over myself", but I feel terrible when I think of how he must have felt when I sounded impatient. Now I only wish I could have done more for him, and I don't have the chance.
 

JoeinAZ

Member
Joined
Jul 9, 2007
Messages
10
Reason
PALS
Country
US
State
AZ
City
Tempe
Hi Mary,

I'm sad to hear of your great loss. I think your Dad knew any impatience or frusteration while you were his caretaker was directed at this terrible disease and the situations it creates, and was not aimed at him personally. Being with him through the stages of ALS and never giving up was a wonderful gift, for both of you.

I'm sure you will find the strength and motivation to tackle the next curveball life throws at you, good, bad or a mixed bag. Now is the time to reflect, remember and heal.

Best wishes to you
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Mary Helen! So sorry to hear about your dad. My condolences to you, and your family, and may he rest in peace. I, myself thought that my son was going to be with us longer, but it did not happen. I was really shocked when he passed. I knew it was taking place, but I accepted it. What else can we do? We can't change anything. Our Father called him Home, and he had to go.

I am so sorry to hear about the times when you got impatient with him. You might have just been tired, or something. I will never forget the time when my son wrote on a pad, and asked me if I was tired of taking care of him. He asked me if I was mad because I was caring for him. I told him not to be silly. I told him of course not. These Pals they are worried about being a burden. My son told me he didn't want to be a burden. I told him that I cared for him when I brought him to this world, and I told him that I darn didn't mind caring for him while he was down with this damn disease, and I meant it. It's all about love! TLC!

May God bless you, and take care of yourself. Just think of all the good times that you and your dad had together. God bless!

Irma
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
City
marshfield
Hi Mary,
Thank you for sharing - you have given such a wonderful gift of your time patience and caring - your own desire to have helped more can make you look back at times you wish you had done things different / better... you have to remember you are only human - but a super person to be such a wonderful CALS - The good bye is so sad and truly scares me for my PALS... I want this disease to stop- it is really tragic.
God bless - sleep well - knowing you did your best - there are no regrets when you have tried to do your best.
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
My sincere condolences to you & your family.

Mary,

I am sure your Dad is looking down from heaven now, and thinking how proud he is of you for who you are and how you were there for him. Take pride now, and make more happy memories to share with your Dad when you are with him again.

Remember the happy memories before this horrible disease came into your lives. Although, it is difficult, your Dad would not want you to be sad, but to continue making happy memories in your life.

Remember one day at a time will help you get through this hard time. As a CALS, we know how you feel.

Hugs,
Caroliney
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Mary Helen. So sorry for your loss. I am sure you did all you could for your dad and I am sure he was proud of everything you did.
AL.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Mary, so sorry for your loss.....sounds like you loved your Dad so much and he you!Please dont beat yourself up over what more you could have done or the time you lost patience.....It happens to all of us caring for our Pals!You Did your Best and I am sure your Dad knew that.! God Bless you and try to remember the good times!....Gina
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Mary Helen... I am so sorry to hear about the loss of you dear dad. I too lost my mother this past September and I keep questioning myself if I did everything possible for her and what more I could have done.

Remember your dad is in a better place free of this terrible disease. God Bless. Anne
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Mary - Helen,

I am sorry to hear about your dad's passing. Take comfort in the fact that he is now pain free and can talk etc. When you meet again you will be able to enjoy the man he was before this cruel disease took hold of his life.

Day by Day, Week by Week you will have more haapy memories of these happy times. Right now please dont be hard on yourself about the times you lost your patience..........You did all that you could and more I am sure than you would ever have thought you could..............Be proud, some just simply walk away and cant bare to just be there for their loved ones...............you were never angry at your dad just the fact that this disease impacted all of your lives.........

Take care and look forward to a time when the happy times will come flooding back to your memories................it does happen.
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Hello Mary Helen:
Please accept my condolences, this is such a difficult time for you. I know that you will treasure your father's words when "he told me how much he appreciates all I've done, and he could never be able to repay me."
Those are the things you will hold in your heart.

And I would like to thank you for your advice (some time ago now) on catheters. But for your suggestions on the 'Hollister brief' we would have struggled for a long time.

Your music must have been a great solace to your father. Know that you gave the very best of caregiving. Wishing you peace.
 

liz

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

Your devotion to your father was clear in all of your posts. Noone could ask for more.

Liz
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I am so sorry for your loss, Mary Helen. It is always hard to lose a loved one but to have it happen during the holidays somehow makes it worse. I thought the two fo you were smart to say good bye and acknowlege what you meant to each other. Sometimes people regret not having done that. It is clear how much you loved each other. Take care, Cindy
 

Thumbs Up

Active member
Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Mary Ellen, Sorry for your loss. This horrible disease seems to leave the loved one with that awful feeling of helplessness, and wishing you could have done more. It to me feels that you are just standing there while someone is drowning. God bless you and it will come back to you how your dad was before ALS.
 

Rachel

Active member
Joined
Oct 14, 2007
Messages
32
Reason
Lost a loved one
Country
UK
State
Essex
City
Colchester
So sorry to hear of your loss Mary Helen. I lost my mum last month and I too can remember times when patience ran thin - she lost her speech in June and towards the end it became very hard to understand what she wanted at times, even with the lightwriter.

I'm sure your dad is looking down on you know with pride and love in his heart for the devoted care you gave him through his illness. He knows how you feel and is now free of this horrible disease. I talk to my mum lots now, knowing she can hear me & it gives me great comfort.

Concentrate on thinking of the good times, find some photos that bring back happy memories and know that he will be sharing good times with you in the future. My dad is taking a cruise down the Nile in the New Year, something my mum would never have had the courage to do, but something he can now show her through his eyes.

Take great care of yourself. I will be raising a glass to my mum at Christmas, knowing she will be doing the same to me.
 
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