Aftermath

[Graybeard]

I suppose everyone wants to die at home, surrounded by loved ones. How do you feel about your PALS death at home? Are you able to overcome the memories to use the room again? Would it be better if the person had died somewhere else?

What brought this to mind is the 50 suicides a day in the US, mostly men blowing their brains out in their homes. Think of the mess.

 

[affected]

It's nothing like that at all.

Dying peacefully, surrounded by love in your own home.

I had candles burning, lovely music playing, I could tend to Chris how I wanted and how he needed.

I have no kind of haunting from that part of it all, none at all. I find much comfort in knowing I could give him that peaceful ending.

HOWEVER - if a CALS does not feel they can handle doing that, then they shouldn't. I think it is one of the very personal decisions with no 'right or wrong' that can be named as a general statement. It is what is right for each person.

For Chris and myself, it was definitely right.

 

[lgelb]

I am typing this on a table a foot from the bed my husband died in, GB.
I don't think the gore from a gunshot is really apropos, since most PALS wouldn't have the physical ability that requires. There should be no appreciable mess w/ in-home death. If there were bloodstains that could not be removed, obviously that would be an issue, but more so the trauma of suicide. But that trauma is that there was a one-sided conversation.
This goes back to Barbie's vent thread and Gil's most recent thread. Every PALS that dies of respiratory insufficiency and opts out of or is not offered a vent is in essence committing suicide by proxy [someone else is involved]. So there is a two-sided conversation somewhere along the line.
Since you seem to be mulling place of death options, let me say that I am grateful with every passing day that Larry did not die in the care of strangers nor in a place he hated. I would imagine your wife would feel the same at journey's end.

 

[cheerleader]

Graybeard, if I had chosen for my husband, it would have been at home. And if I had known he was near the end, I would not have left the hospital. As I process (again and again) his death Friday night, I still cannot see anything but a seemingly pain free recovery ahead for him. But He so did not want the peg tube- and I honestly think he felt that was the beginning of a complete loss of independence that he so valued. He wanted his freedom from this monster- and I have to be happy for him that he won over ALS and is free. I'm also thinking that he wanted to spare his family and passing peacefully in his sleep at the hospital was his way of protecting us. Hard to stop thinking about all of this and trying hard not to feel guilty that I wasn't at his side. So graybeard, however you go, it WON'T be easy for your loved ones. Sorry if I'm rambling- still in shock and feeling like I'll wake up and it will just have been a bad dream. Donna

 

[Nikki J]

GB in my experience a peaceful passing does not leave any more residual trauma. The whole house is of course filled with memories and the presence of the departed. That is how it should be I think.

I find the idea that refusing a vent is a form of suicide deeply hurtful. It is a choice certainly but somewhat similar to refusing more chemo for advanced cancer or even being a DNR. It is not killing yourself ( the definition of suicide). ALS is what kills us.

 

[dalvin]

Agree with you Nikki. Opting out of invasive vent is not suicide, it's allowing God to call the shots

 

[tinyandme]

I am sitting 3 feet from where Hayden died peacefully in our living room. I love it here, can't wait to get home each day as it feels like he's still here. I'm so very glad we stayed home, it was calm, quiet, I kicked ppl out when we wanted to be alone. Perfect.

 

[MaxEidswick]

>I find the idea that refusing a vent is a form of suicide deeply hurtful

Ditto that!

>I am sitting 3 feet from where Hayden died peacefully in our living room. I love it here, can't wait to get home each day as it feels like he's still here. I'm so very glad we stayed home, it was calm, quiet, I kicked ppl out when we wanted to be alone. Perfect.

 

[Grumpy'sWife]

GB - I have a unique perspective on this topic because my mother committed suicide when I was 16. I was in the next room when she used a shotgun to the stomach to end her life. It was messy, horrific, chaotic and so very beyond my understanding in that moment. It took many years of therapy and my wonderful Grumpy to make me realize that it wasn't my fault and that I wasn't in any way responsible. I never set foot in my stepfather's home again.
Grumpy does not want a vent, he does however want to die at home. I will do everything in my power to try and honor that wish. I definetely in no way compare Grumpy's wish to not be vented to any form of suicide.
When we began looking for a place to live we decided someplace that was wheelchair accessible, close to our 3 girls and a place that I would feel safe and comfortable in after he was gone. We moved here on Nov. 1st and it's already home. I plan to stay here after my Grumpy is gone. To be where he has been, to see the chair where he sat, to lay where he laid his head and hopefully to hear the echo of his last "I love you".
~ Kaye

 

[MaxEidswick]

>To be where he has been, to see the chair where he sat, to lay where he laid his head and hopefully to hear the echo of his last "I love you".
~ Kaye

beautiful!

 

[GregK]

ah, geez Kaye. Hard to read the other replies now with wet eyes ....

 

[skipper66]

Refusing to have a vent is not anyway close to suicide. When my dad passes away from this disease got is going to take him by the hand gently. I pray for a happy death for him when the time comes. God, is going to answer this prayer for me. I know it with every ounce of my being. I'm not saying we aren't going to have a real rough road before then. But, at the end God will show his compassion and my dad will go peacefully.

 

[vzandt]

I don't believe refusing any medical procedure is suicide. You have to sign a paper saying you understand the risks every time you have something done. You could die because you let them do whatever it is they say you need. Even while they tell you you could die without their care..they tell you you could die with it. How could that be suicide? It's a choice.

 

[Gembead]

My father, father inlaw and sister inlaw all past away in their own homes surrounded by their families as they took their last breath, there was never any saddness or regret about their choice, mum died in hospital and was only allowed 2 family members with her, I am one of 13 children, I would have loved it if we could have all been there to say our goodbyes.
It is a very personal choice, I hope my hubby stays home and surrounded by those who love him as he passes into glory.
Love Gem

 

[Santa joe]

Santa Joe passed away at home just the way he wanted. I wasn't sure if this house would be a place of sad or happy memories. As it turned out a little of both. When the sad thoughts come into my mind I replace them with happy ones. I was fortunate to have my sons and his RT take all of the equipment and hospital bed out of the den shortly after the funeral home came and took his body. That made the biggest difference for me.

Debbie