Caregiver guilt round 2

[pastor]

I am about to begin my second round as a caregiver. My mom is the 3rd of her siblings to experience this ALS monster. I was the caregiver for her sister who passed in 2010. She only lived 10 month after diagnosis. So needless to say I am terrified of walking through this again.

But the real problem is the guilt of round one. My aunt was in respiratory distress and had made the decision from the beginning not to use a ventilator. She told me and her dr over and over not to put her on a ventilator. Although she had a daughter that lived across the country, because I was her caregiver the dr's consulted with me when she went into distress and I had to be the one to tell them not to use the vent. Even though it was her decision I still carry a tremendous amount of guilt that we didnt do all that we could to save her life.

They began giving her morphine and I felt like I was putting her down like an animal. And now my mother....bulbar onset. I cant do this again!

 

[Vincent]

This wasn't put to you as a choice, and God does't give you more than you can handle. Just BE where you are and look for grace. It can be hard to find but it's always there
Vincent

 

[affected]

Again I can't really know what you are going through as I just can't imagine having to do what I did for Chris a second time around.

My Chris lived 11 months after diagnosis.

In Australia, we do not have the option to vent. All I can say however, is that I would have been highly distressed if we did have the option and Chris had chosen it.

He was rapid progression bulbar onset with FTD, and in that last month of his life he had minimal use of one finger, was about to cease attempting to weight bear for any transfers, had no speech, could not eat at all, was less than 50kg and was developing a pressure area on his bum.

No one could have told me that living longer would be any kind of good option. He was terrified of dying, but at the end, with me giving him the right meds the right way, he was totally peaceful in the 4 days when he and I both knew he was actively dying. He was not in any distress, he was comfortable and he died with dignity at home with me.

I don't know how the end was for your Aunt, but I would venture to say that if she did not want to live on a vent you would not have been granting her life, you would have been sentencing her to something she feared. If she had been vented, she only had MORE progression to live for, only death in a worse physical condition with a machine stopping that happening as quickly.

There just is not any right or wrong in this, simply personal choice.

We have debated venting here several times this year, and I think that whilst we have a range of views, most everyone agree that when it is rapid progression and the body fails fast, saving the breathing at the end is not the same choice as it is for a slow progression PALS whose breathing is going early. If that person chooses to vent early then they can and do enjoy some time of quality still and often choose later to have the vent removed.

Again, please believe me that I don't know just how I would feel if I suddenly had to take on this role again, I'm sure I would be in panic. I can only hope that over the next month or two you will come to some place of acceptance and that old guilt will go away and allow you to embrace what is coming.

I know that if it were me, I would not want a vent.

The pain you have of knowing too well what is ahead is too cruel. I so hope you can find some peace, and that we can all help hold your hand as you do your best. That's all we can do, our best, and it isn't perfect, and we can't cure our loved ones no matter what we want.

Thank you for being willing to say clearly what is happening inside you.

If you really feel you can't do this again, what are the options? I found it the most powerful thing to stay and look after Chris by choice, not because I felt I 'had to', or had 'no choice'.

hugs

 

[affected]

removed because the mods were faster than lightening!

 

[affected]

my first attempt at reply went to mod, knew I should have done something to prevent that ...

 

[affected]

This wasn't put to you as a choice
Vincent

I politely disagree - I believe everything we do in life is a choice.

Lots of people run away when a partner or family member become terminally ill. That's a choice.

I chose to do what I did for Chris, and I never felt trapped or that I simply 'had to' do it.

That made it a load I could bear - anytime it got too hard (which was often) I knew that I was constantly choosing to remain and do what I did. This allowed me to always know that I made my choice out of love, and I could then care for him with love.

That's just my opinion of course, I could be wrong, but it made all the difference for me as a CALS.

 

[Atsugi]

Pastor, I read your post about your aunt passing without a vent.

When you were called to make the hardest decision in life, you supported your aunt's wishes. Good for you. You did the right thing.

I had to do the same thing. My wife did not want any tubes at all, and preferred morphine to oxygen. I supported that, even when she was unable to communicate.

I'm sorry to hear you're feeling guilty about that. I don't know where that feeling comes from. Honestly, besides the sadness I feel for losing my wife, I'm actually happy to say that I did right by her; I made sure her dying was as peaceful and painless as possible.

You say you feel that you didn't do all you could to save her life. That's really confusing to me. No one can save a person who has ALS. It's just not possible. As Tillie pointed out, prolonging life is the same thing as letting the disease progress even worse. Your aunt (and my wife) definitely didn't want that. You did the right thing.

I'm sorry to hear you're about to go through this again. In fact, I expect I'll be a caregiver again, too. I'm certainly not looking forward to caring for my children's last days; but if someone has to do it, no one can do it better than me. I wish you luck and I'll be happy to help you in any way I can.

 

[Santa joe]

Pastor, I'm so sorry you have to face this monster again. I like so many honored my pals wishes. As hard as it was at times, I knew in my heart that is what I had to do. As for the vent, please read my posts so you can understand my journey. We are all here to help.

Debbie

 

[DreamsEnd]

Pastor,

I am so sorry that this choice was put in front of you again! I don't know how one gets the strength to go thru this again. I completely agree that you honored your aunt's wishes and have no cause for guilt. I can also relate because of the way I was raised or should say I internalized my upbringing, I've felt guilty about something most of my life! I've decided to give that up and accept doing my very best with the information I have at the time. There is so little our pALS have control over allowing them to control their exit gives them their dignity.

Please get all the help and use all the resources you can find!

Sherry

 

[Snowman78]

Pastor,

I too hate to hear that you are having to go through this again, and my prayers are with you. Please try to let the guilt you feel go, you honored your aunts wishes of not being on a vent and and therefore gave her dignity in dying. It wasn't your choice to make, she made the choice for herself. My dad has chosen to not have a vent or a feeding tube and I acept and will honor his wishes until his dying day and be proud that I served him well during his time of need while being ill. It took quite a while to get this across to my mom who just didn't grasp it. She too felt like when the time came and she had to give instruction on what to do that she wouldn't be able to follow his wishes because she woul feel like she didn't do all she could to save him. It took some heated and discusion and we cried together but she understands and is accepting now. We went back and forth about it in deep discusion and she asked me if I could live with the fact that I didn't do everything I could do and use every option available to keep him from dying. My answer was simple, I told her I absolutely could and be I would be proud. I went on to explain that these weren't our choices to make and that dad made these choices and felt strongly enough about them to have it drawn up in his paperwork by a lawyer. I would feel more guilty if I did allow it knowing he did not want it. She finally understands and is supportive of his decisions and when that time comes we will follow his wishes and stand by his side.

 

[Snowman78]

P.S. Don't look at the morphine as putting her down like an animal. In that situation in my mind there is no other choice. They can lay there and suffer until they pass which with als is inevitable or they can be made comfortable and die a peaceful death and go on to be with the lord. In my humble opinion not giving them the morphine and letting the suffering continue would be inhumane.

 

[Snowman78]

I hope you take no offense to anything I have said as these are just my humble opinions. Prayers to you and your family!

 

[MaxEidswick]

>Don't look at the morphine as putting her down like an animal.

many of us don't consider sending a beloved pet to the Rainbow Bridge inhumane either.

------
Just this side of heaven is a place called Rainbow Bridge.

When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable.

All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.

They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....

Author unknown...

 

[skipper66]

We used morphine for my mother when she had terminal cancer for about the last 24 hours of her live. She just went into a very peaceful sleep and passed away peacefully. Now my dad has ALS and I hope when the time comes he will go the same way. My dad refuses to have a vent. Which I am so glad about. Because if it would be left to me to ever make that decision it would be a absolute No ! There is currently no cure for ALS and I would never prolong his life when there wasn't going to be much quality left too it. You did absolutely the right thing for your aunt.
Also, I had to put down pets as well and it was extremely hard. But, it was a very fast and humane way to let them go and not too suffer. Hated to have to do it but never regretted that it was the right decision to do so. Kim

 

[skipper66]

I will let it go and not say anymore. But, I kind of resent people thinking that sedating my mom so she died peacefully and with dignity means we had her put down. If anyone could actually have a beautiful death my mother did and I pray that my dad when the time comes does as well. My dad and I held her hand as she took her last breath and our last words to each other were "I love you." People who die in tragic accidents don't get that chance. None of his know when our time is coming. With a terminal illness the only blessing one has is that they get a warning to make the necessary ammends they need to make in their lifes before it's too late.