how soon?

[hboyajian]

Dear Buf68, I am so sorry about this incredible loss in your life. The pain is huge right now, and for a long time you may re-live the painful events around his death, as his life meant so much to you. I also experienced this (as well as some insensitive medical personnel, though thankfully there were really helpful ones too). In time, the memories of the more difficult physical and psychological aspects of my father's passing have faded for me while the precious moments of love that we shared close to the end have remained strong in my memory. At first, I could hardly stand the anger and confusion I felt about some of the things that happened at the hospital. I found a counselor to talk to about it, which helped me considerably. You may want to do this or find a support group. I sincerely hope you have the time in your life to grieve and that you can find support from friends, and eventually your family as well when they are able.
I find that the grieving has been different than I thought. At first, I was so numb that I couldn't cry or seem to feel anything but emptiness and a huge hole in my heart. If this is happening for you, other people may misinterpret it as "strength". Then after a few weeks I went through episodes of crying and shaking so hard, waking up in the night. Whatever happens for you, be good to yourself and let yourself experience this bottomless grief however you need to. Your dad's love surrounds you even now. Sincerely, Holly

 

[liz]

I am very sorry for your loss. Condolences to you and the rest of your family.

Liz

 

[vmd]

I will keep you and your family in my prayers.

 

[Tonya]

I am so sorry for your loss. The whole time i was reading your post i was crying for you but also for me because i can see me in the same place soon. You and your family are in thoughts and prayers. Stay strong and God will help you through this..My heart goes out to you.

God Bless you

 

[caring daughter]

Dear Buf68

I am so sorry about the death of your father. Thank you for sharing what must have been an incredibly hard experience for you. Know that you are in many peoples prayers. Sincerely, Shelly

 

[buf68]

Thanks everyone for your support and kind words and prayers. Today our regular hospice nurse and social worker came out to visit and chat about the experience. We posed our concerns to them and they too feel how we feel about some issues. They are going to talk to the nurse supervisor and she'll probably call and chat with us. We are hoping that at the very least the on call nurse will be chastized or will have to answer for the fact that when he arrived he did nothing for 1.5 hours, and then was authorized over the phone to do more than he finally did. His demenor was also very lacking with our family. So hopefully he will have to answer for that somehow...if only to apologize to us.

 

[CindyM]

Dear Buf68 - I am glad your family is having this meeting. It would be nice to get some sort fo closure for this painful experience and give important feedback to the staff who seem insensitive. Let us know how it goes! Cindy

 

[MtPockets]

Dear Buf68

I'm so sorry you had to go through your fathers death in this manner. I pray God will give you strength and peace in the midst of it all.

A thought for others who will experience death with a family member.

My wife's mother died of cancer 2 years ago. She suffered such pain beyond description. The doctors had told us she would not last long so we gathered the family at her bedside. She was sedated to try to control the pain and make her as comfortable as possible.

We had all been praying for her, and weeping knowing what was coming for several hours. Finally her last grandson arrived, and we all prayed and said our goodbye's to her and told her it was ok for her to let go. We hated to see her leave this world but knew as a Christian she was headed for a better place with no pain or suffering.

As my wife's brother layed his hand on her shoulder and we all were crying, we each told her it was alright to go now. She had her family by her side and there was an amazing moment when we all just knew the end was here. It was time. Then she quietly passed away.

We had such mixed emotions. Glad that she finally had relief from all the pain and suffering, but sad at seeing her go. But, we were blessed, because it was like she waited for us all to be there, to say goodbye, and tell her it was alright to let go.

I know nothing can ease the pain of losing a loved one. All I can offer is a prayer for peace and for God to comfort you at this time.

God Bless
Capt AL

 

[MtPockets]

Thank you so much for your kind words. Everyone needs encouraging from time to time and I appreciate it very much.
God Bless
Capt AL

 

[JACKIEMAX]

to buf68 and all caregivers and family of als patients

as i sit and read these posts about your father's dying, and the sweet posts by members of this wonderful forum, i, too, am crying. my husband has had als - limb/onset for only a year and a half, but his als dr. has already told us that he only has a few months to live due to his respiratory situation increasing at a rapid and frightening pace.

it was upsetting to read about the hospice nurse's uncaring and negligent care. i am so afraid the end is coming closer for my husband, that i am on pins and needles all the time now. i buried my first husband 12 years ago due to lukemia. we had home health, but not hospice. no one had educated me about the signs of his coming death, and although he had acute lukemia for 6 years, i was in denial and completely unprepared.

two days before his death i called 911 and he went to the hosp. but all they could do was keep him comfortable. he was septic 100%, urinary infection, and double pneumonia, and they gave him strong antibiotics through his iv. and yet, his dr. told me when the antibiotics got rid of the infection, he could go home. this dr. knew he was dying and would never go home, but was not honest with me, and his death took me unprepared. on monday before his death on tues. morning, the nurse told me he was hanging on bec. he didn't want to leave me crying and upset, so i held his hand and told him i would be ok, and to go and be with his Lord. he died the next morning.

my husband and i live alone, and i search this forum for knowledge of what i should be watching for. are we ever prepared? no - no matter how much knowledge we have.

i love each and every one of you, and buf68, i am truly sorry for what that nurse put you all through.

jackiemax

 

[MtPockets]

I know it may not be much comfort, but from talking with people on the forum and AL, our great sage of wisdom, (not me, Al the moderator) it seems most of us with ALS die in our sleep. I'm sure there are exceptions to everything and surely no hard fast rule as mixed up as this ALS thing is.

I think a lot of it has to do with our will to live, fight, and not give up no matter what we are facing. I'm a stubborn old cuss myself and kind of like this thing called life. Yes I know there is a better place for me in heaven when I leave this body, but life is so interesting. You never know from one day to the next what some crazy politician or dummy on TV is going to say that just makes you laugh till you cry. And then there are the days when you cry till you laugh. But one thing we all will share in LIFE is we are ALL going to die someday. Thank God that He has given us the time to prepare ourselves as well as our loved ones for it before it comes. What a blessing. TIME,,,,,Try to use it wisely.

Life is special. God made it that way, I believe just to keep us from being bored. I see so much life and humor in my 15 grandchildren, that I fight to stay around as long as possible, just to watch them, enjoy them, and help them. Load them up on sugar and sweets and send them back home to my kids to face the action. Ha Ha. Pay back kids.

You see in the past I died on the hospital table at least twice and once had an out of the body experience. (Very interesting) So in a way, Been there Done That, Not worried anymore.

Sorry, as usual I got sidetracked. I guess these are just some thoughts I have I been having myself, about why I never give up, why I trust that God knows what is best, and why...........why, why, :-D

Jackie we never really know the exact time God will call us home. I wish I could give you some better advice. About all I can say is look to God for the peace you seek and for the strength to face what we all know is coming. I will pray that God will grant you peace in the midst of the storm and most of all comfort, for He is the great Comforter.

God Bless
Capt AL

 

[d.shaw]

real quick

my father passed today ,3mts after diagnosed they thought it was a stroke.by the time of diagnosed he had lost more than 50% of his body wieght,in hospital 8 days ,refused the peg, he had given up after mom died 2yrs ago. broken heart!

 

[MtPockets]

So sorry

I'm so sorry to hear about your father passing away. I pray for peace and strength for you during this time.
May God Bless
Capt AL

 

[CindyM]

I am sorry for your loss, d. Shaw. You will be very busy teh next few days but be sure to stop in if you need us! Cindy