Do I need to die well?

GREAT topic.  I am so torn over this...One moment I am think I need to go to HOSPICE to die, but then again, so many people I know who have had parents that died, cherished and wanted every last minute with them.

Do I want the last memories of me for my boys to be a delusional sick mother dying...or good memories when their mom was fat and full of life, but then went away and died? I don't know....

If I am in A LOT of pain, and nasty looking, body fluids icky, trouble breathing...I rather die in a place with limited contact. I don't want family and friends to remember me that way.

HOWEVER,

I was with my grandma when she died. She was in/out of being Looney tunes, as my mom calls it. But truthfully, I was so glad that I was with her when she passed. It was peaceful. I said Hello. she said she liked my outfit (came from work). I asked her how she was feeling. She said "like shit" lmao...My mom and I were talking...Grandma fell asleep and died. peace. That is the way to go? NO??

Dying is a part of life. To be there when someone dies is a gift. Do I deny my family that gift?? is it selfish..

If the passing is peaceful and beautiful, what is there to fear?

This is so hard. I tried to talk to my husband about this...he wont do it.  I don't want to scare my boys, yet...but when the time comes, I will ask them, my parents, my siblings...and my bestest friends...

It sucks. Truthfully? I would want to be there if my siblings/parent/child were passing into the next life...to be there..holding there hand.

Janis

I want to die the way I want, not what a book or social worker tells me to do.  I want to be selfish, it's the last thing I do and it's gonna be my way.  Hopefully I will be able to prepare my loved ones as best I can before the big event.  Then it will all be about me.  I want to die at home with my Mom at my side.  I will need my Mom and I can't imagine her wanting to be anywhere else than at my side.  Same with one of my sisters.  The other siblings aren't invited.  I don't like the idea of a hospital, no matter how many of my belongings are there to make me comfortable, I want to be in my own bed, my own home.  With my sister as a doc I know she will make sure I'm comfortable.  I know it will make me a burden on whomever gets stuck with me, but well, all I can say is sorry about that.  Of course this may all change when the time gets close.  But the one thing that I will always want is someone with me, someone who cares about me, I wouldn't want to be alone.

Edit:  Pookie -- I think you should do what you want, what is in your heart.  Consider everything (i.e., kids/no kids, home/hospice) and do what your heart and mind tells you to do.  That's all I can think to say about this.

Another edit:  I also think, if I'm in la-la land and it is certain I won't wake up in a moment of clarity just before I die, I think my health advocate (sister) can decide what is best for her and Mom, since I will be so out of it, it won't matter what I want, I won't care.  Does this make sense?  Pretty well do it my way as long as I know what's going on, if I don't, do what's best for my Mom and sister.

We had home hospice for my mother when she died. Like many cancer patients, she had been in and out of hospitals a lot over the previous year. Once she was declared terminal, she just wanted to stay home.

The last week of her life, almost all of her seven children gathered in the house with their families, some from quite a distance. Being able to stop in and sit with her whenever she was coherent was a blessing. And when she dozed, we were able to catch some sleep ourselves or do some housework.

I had my then five month old daughter with me, and she loved seeing her...her first granddaughter and a redhead! Before my mother lapsed into her final coma, my sister-in-law brought by her brand new, 2-day old baby, a second granddaughter, named for my mother. That gave her such joy!

As for your fear about leaving sad memories in your home for your children, all I can say to that is I'm living in my parents' house now, in the bedroom my mother died in. It holds no bad memories for me, maybe because there are 50 years of happy family memories that outweigh that one sad day.

No one walks by my room and says, "That's the room Mom died in." It's "Nancy's room." It was my room growing up and it became my room when I moved back. In between, my mother "borrowed" it for her final days. And I feel honored that she did.

perhaps I can give another perspective to this discussion.   My husband wanted to die at home.   It was just me there taking care of him.   His sisters and parents had previously died.  His children from his first marriage (3 of them) had no contact with us, although I kept them informed via emails.   

Our only son lived over 1000 miles away and I spoke with him daily.  With each crisis event - ER trips, hospital stays, our son flew into town and towards the end, he was able to spend 2 weeks over Christmas with us at home.  We put up a tree, took zillions of pictures, made and ate our favorite foods, laughed and cried together.   It is a lovely memory for me and for our son.

We had set up our family room for my husband - computer, sofa bed, TV, bathroom close by, telephone,  most of what he needed.   Our house was 4 levels, and you had to go up or down from the family room to go outside or to the car.  

I had mixed feelings about him wanting to die at home, but it is what he wanted.   One day I went to the grocery store and had my cell phone.  He called almost as soon as I was down the road and said he felt terrible and to come back home.  I asked if he wanted the ambulance and he said yes.   I told him if he could get to the front door and unlock it ok, if not, just stay where he was.

I called 911 and had the ambulance on the way as I zoomed back home.  We both arrived at the same time and he had been able to get to the door and unlock it.   Jumping forward, he died 5 days later in Trauma Intensive Care.  Our son and I were at his side and he was in no pain.  Up until almost the last moments he was able to nod and gesture to us and write on a tablet.  He was on a full face mask for oxygen and could not talk.    IV for morphine, various tubes and monitors also. he slipped away peacefully with both of us at his side.

We lived in that house for 33 years before he died.  I do not know how I would have felt if he had died at home.  All of my good memories in that house do not take away from the last weeks he was suffering.   They are not "bad" memories, and I am glad he got to spend as much time in our home as he wanted.  

I know this is a long post, but as the widow of a cancer patient, I wanted to share my experience.  I sold our house 2 years ago and do not think of it as the place where his health declined and where he prepared to die.  I think of it as the place we used to rear our only son, the place we had wonderful meals and visits with friends, and the place we called home for 36 years.

Hugs,  nancy 

Good topic for discussion.  I've been doing the ostrich thing but I need to work this out.  My husband won't talk about it.

I don't know if the choice is ultimately mine.  This is the scenario I envision:
My husband works night and day now.  He has to because I'm not working and he's self-employed.  If he doesn't work, the bills don't get paid.  I can't honestly see how he'd take time off work to care for me AND the kids.  We do have insurance so if the end were near I suppose there'd be money somewhere. 

Okay, so I have my best girlfriend.  She also works full-time.  She can be quite aggressive at times and I could really see her stepping in to take charge - so much so that my hubby would be pushed aside (or, because he has a wicked temper), there being a scene over who the decision-maker is.  Right now I have a living will and my husband has medical power of attorney but under the circumstances I just don't know.  My husband has never cared for someone sick (let alone dying).  What would he do?

I also don't have a lot of faith in our health care system right now.  They're restructuring the palliative unit at my local hospital and laying off almost all the RNs and replacing them with RPNs and PSWs.  The unit's in an uproar right now (I have insider info). Lot's of nurses with seniority feeling pretty angry (and rightly so).

So it's tough for me to decide.  I just pray the end isn't near because I don't have this sorted out and it's been mentally bogging me down thinking about it.

Dreamweaver, wow, you've got it all planned.  I'm glad to hear there's a place in our neighbourhood that is so supportive for you.  I'm kinda down on the system at the moment.

Barbe1958,  Put into words, what I found so hard to explain. My Mom and baby Sister, both died at home, with me taking care of them. The end was peaceful, but getting to that point, was both physically & mentally exhausting. Those memories, will haunt me forever. The Daily visiting VON emphasized to me, how much more humane it was for loved ones to die at home. But I feel there are certain cases, in which this is incorrect.  I feel it took away my right, to be just a daughter & big sister. Instead, my main roll was that of a caregiver. Hospice personal are educated to deal with very difficult circumstances, that we are not. In mentioning this, I do recognize that each and every person has unique experiences. VON visited daily. They left me specified info on how to administer pain meds. I followed those instructions precisely. I am going to share with my breast sisters an experience I had,  that I will never share with another sole. This knowledge would cause substantial anguish to my siblings and it would consume & destroy my Dad. Unexpectedly, at about 3:00am in the morning, my Mom started to experience severe pain., which in turn, caused her to have a seizure & stroke. The duration of the seizure/stroke was about 2 minutes. I thought she only had moments to live. Her body lay stiffened and curled in a very awkward way, only the whites of her eyes showing & her hands were stiffened into claws. I wrapped her in my arms, and for hours told her over & over again, how much we loved her, how proud and blessed we were to have her as our Mom. While I was holding her, over time, her body slowly relaxed. She passed away a few hours later. I am convinced that if she was in hospice, this wouldn't have transpired. In hospice there would have been trained professionals there, iv meds & increasing meds at the first sign of discomfort. I live everyday with the memory of my Mom in so much agonizing pain, that it drove her out of her mind.  Such a strong individual all her life, reduced to begging me for more pain meds.   I choose hospice. That way, my daughter can be just my daughter and my husband just my husband.

Dearest Elizabeth;  You are right.  It's not the location that matters.  It is who is there to hold our hand, when the time is near.   My daughter & Husband will help me pass from this world.  And my Mom will welcome me with open arms on the other side, I miss her soooo much.  I couldn't ask for anything more. 

{{{{{{{{ Irina }}}}}}} I pray you find a safe haven....

I also watched the professionals use suction to clear both my Mom and my Dad's airways as they had very laboured breathing with a lot of fluid and sounded like they were drowning. I don't think I would have put the wand so far down their throats! Would I do any good then? But it was terrifying to sit and listen to them trying to breathe! I was sent out of the room while they wiped my parents down from bowel movements. I'm glad I didn't have to see that, but I did see them turn my Dad over and start to wipe, that's when I turned away from the door. It only happened once near the beginning of their coma's as after that there is nothing to pass.

I agree with Elizabeth, it's not where I am, but who is with me. 

I know this is not a funny topic,  but Elizabeth I  ROFLMAO picturing a bunch of us, keeling over on that  A$$hole's front lawn!!!! 

Dear Lizws;  Thank you for sharing with us.  It doesn't matter if your stage 0 or stage IV.  This disease is so very unpredictable, we are all in the same boat.  (((Hugs)))

Fitz, I'll wipe your drool!......Honestly, though, I was 8 when my mom passed and watching her grow weaker and weaker everyday over a couple of months was extremely hard....She was a very active person and kept her house spotless and even swept the grass after my brother mowed so there wouldn't be any lines of grass everywhere.......After she got so sick it was really hard on us kids cause the people who came to care for her really didn't care for us.....We had to fend for ourselves.....When my mom died she died peacefully at home in our living room....I really miss her to this day...It has been 37 years since she died and it feels like yesterday some days.......

Both my parents had a DNR on file as Dad had lung cancer and Mom liver. The hospice/palliative in the hospital wouldn't perform heroics on them, just keep them comfortable. After about 5 days at my Mom's side I asked the doctor if he could just give her "too much morphine" as she had been in a coma for 4 1/2 days dying. He said he couldn't, but we could. He said the nurses would giver her morphine every time we asked them to. So every time she twitched, we did. My brother still thinks we killed her, but she was so far gone already at that point there WAS no point. We didn't want her to get to the point of bleeding out like lizws experienced!

I think the hardest thing for a parent is to watch their child die, but I would be there. I don't want my kids to see the whole process, but hope they are with me at the end. The nice end....

I took care of my mom at home and she died in my arms.  She had pancreatic cancer but was pretty much pain free and her death was expected and quiet.  She was ready to let go.  From a child's perspective, this is what I think.( I was 45)  I wanted to be with her.  She was the first to hold me when I came into this world and I wanted to hold her as she left.  However my last memories are not of the funeral, but are of her last breath.  And there is something to be said for being able to walk out of the room and have hospital staff there.  I watched Mom go out in a body bag and although the funeral director was very kind, I thought of nothing else for about 6 weeks. The re-runs were emotionally disturbing.  So if I do it, I will be somewhere where that extra burden will not be on my already grieving family be it hospice or hospital.

Sorry if this seems cold and insensitive.

Deb

Elizabeth, I think lavender sheets would complement the jaundice nicely.

Barbe, you did the right thing to help your mom's passage.  I hope my family has a similar opportunity, I know if they do they will take it.  I only hope they don't get themselves in any trouble, and show good judgment.