Do I need to die well?

I don't know about the US, but here in Canada, our hospitals have palliative wards where patients go to die. Family is allowed to stay and there are break rooms with fridges and everything. You basically live there with your loved one until they pass. That is where I want to be, and that is where my parents were (3,500 miles apart, mind you).

I'm wondering if there is some confusion here over hospice and palliative as we use them interchangeably. My mom died in the hospice ward where she had worked for 8 years! My dad drove for the cancer society taking patients to treatments for about 6 years before he was diagnosed.

Another advantage of the hospital setting is that organs can be donated in a quick and timely matter.

After 7 long years of treatment, my mother wanted to go home.  My dad, sister, and I took care of her for 13 days at home in her room until she passed away.  We did not even think twice about it.  Hospice came in everyday to check on her.  They showed us how to give her pain medication, empty the catheter bag, keep her mouth wet, etc.  I would not have wanted her to have someone do those things except us and neither would she. 

konacat, you can have your pretty nightgown.  We would put mom's on her and change it out everyday after her bath. 

We would change her sheets, turn her when she needed it.  Yes it was exhausting for all of us, emotinally and physically.  We talked to her 24/7, held her hand, soothed her, told her how much we loved her and what a good mom she was.  She never responded to us but we treated her just like she was present.  Yes it was sad, it was heartbreaking, it was painful, but it was worth it.  I never ever once considered her a burden.  She was my mother, and we loved her so much, NOTHING would have prevented us from doing whatever we needed to do for her, even if it meant cleaning her bottom.  We did it out of pure love for this woman who gave us so much joy.  After all the she endured to live for us, we would not have had any other way.  We wanted her to die with grace and dignity and she did. 

Konacat, I bet your mother would want to be right by your side taking care of you.  I'm a mother and I know in my heart,, I wouldn't have any other way. 

Dianne

Hope I am not out of line jumping in here. . .

I have had the "privilege" of attending the final days of both my dearest friend, and my dearest sister-in-law.

Burden?  Absolutely not!  I would give my right arm to have either of them back, for a day even, to "wipe their drool," to sooth their lips with coconut ointment, to brush their hair, to hold their hand, to rub their feet, to wash their face and put a little makeup on for visitors, etc., etc., etc.  To plug in the I-Pod on the I-Home to listen to their favorite music--to "be there" when they woke up, if even for a few moments. . .

Several years ago, DH's dearest friend and mentor since law school days develped lung cancer (never smoked a day in his life).  His first wife had predeceased him, and the present wife had him as husband number 6.  He was a man of great means, and when thing got bad and he knew the end was near, he wanted to pass at home.  Wife decided she could not handle it (okay, I don't mean to be judgmental, but they had a huge apartment on Park Avenue, and she could easily have hired round the clock help and moved into a hotel for the final few weeks if she could not handle it, so he could pass amongst his precious books and things) and she put him into a nursing home and told us all we could not go visit him, because he wanted to be remembered as the "debonaire(sp?)" Cary Grant type he was. . .

Well there was nothing we could do about her not keeping him at home to pass, but she certainly did not prevent us from visiting him at the nursing home!!

I am so glad we went to see him every evening, hold his hand, DH talked about cases they worked on years ago, etc., etc.

Unfortunately he passed on one morning when no none was there.

Our entire group of friends had nothing to do with his widow until the day she died.  Wrong as it may have been, none of us would ever forgive her for not honoring his wishes to pass at home.

Ever since then (and before my BC) hubby and I decided when it was our time, we would pass at home.  Period. If at all possible.

Damn hubby even told me the smells he wants cooking on the stove during his last days. . .

And I told him, after I finished chemo, NO SMELLS!!  Just lie next to me and hold my hand as I go on to the next world. . .

Hope I have not offended anyone. . .

I nursed my beloved grandmother for the last 9 months of her life....alone, apart from my (then) 12 year old daughter.

The rest of the family wanted to stick her in a home, not one would give up a minute, or get their hands dirty for her. I lived quite a way from her at the time she got badly ill, so I just scooped her up, put her in my car, and brought her to live with my then DH, my son and daughter. It was just very advanced old age, she was dropping to bits, she was dirty, smelly and badly needed her family ! It was very hard going, but she was just a tiny little thing, so wasn't physically hard. She had given to me, and ALL the other members of the family everything she could, both in time, and what little money she had, she would help out where she could. Not one of the family came to my house to see her....NOT ONE OF THEM....they never saw her for 9 months, the next time they did see her she was in a coffin.

I had a fallout with my 'dear' sister earlier this year, she threw at me, 'and you only had Grandma 3 weeks, so there wasn't much point in you taking her to live with you, anyway' I was more upset by this comment than any other thing ever thrown at me.  In 25 years, 9 months had been reduced to 3  f$%"^ing weeks, and was deemed a 'pointless' operation by the rest of the family. Where the f**k did they think she was all those months, why didn't they call the police in and say I had abducted her? Where had she got to for a whole Winter and Spring ? I shall never speak to them again for reducing my efforts to help a very old lady (and mother to 2 of them !) to a bag of s**t.

I would do it again in a heartbeat for her, and I hope my family will help me out so I can stay among my familiar things when the time comes....I just wish evil things on the rest of my so called family, I really hope there is no-one there for them, and they have to go in a home or hospital alone  when its their time !!!!! I won't be even a visitor to any of them.

Isabella........ oh, and the last thing I want to feel and smell is a dog !!!!!!!!!!!!!!!!!!!!!!! 

What a great thread! I love the gallows humor that always rears it's head when we get going!

I think the definition of dying "well" varies from person to person. My sis was with my mom when she died. Tho she admits it was one of the most dificult things she ever did-she also says it was one of the most blessed & was glad she was there. (but would not do it again!)

A few years ago I had to do some research about dying & the development of funeral homes. It is fascinating how the birth of such places changed our culture's view of death. It was never a burden but something EVERY family did! Assist the dying to the next level & then prepare the body---IT WAS NATURAL!!  There was no other option. There is a small movement in this country to get back to the old ways............might be a good thing!

The way Hospice & Palliative care work is very different from one location to another. It seems to me that where our death happens has to be a decision made by everyone involved. We are all different, so some can not have this discussion, but it can't be just one person's choice! I am still unsure of how I want it to happen. But I KNOW I'd like it to be FAST & peaceful!

Shall we all agree to Irina's front lawn for now?????

Be well & stay strong

I guess my comment about orgrans was wrong. When my mom died they asked about her corneas, not her organs. Then they said, oops, as her liver was involved, they couldn't take them anyway. Didn't know about the other parts but it sure makes sense.

I think there's a bit of confusion here. Some are talking about care for the elderly and the ill, and others are talking about the last HOURS of life. When I talk about dying, I'm talking about the very end. Not the lead up to it.

I think it's awful that Jane's DH's friend didn't get to die where he wanted, and ended up dying alone! I also love that Isabella mentioned a dog smell! I love my cats and would love to have them curled up on my bed with me when I go. I just don't want to be alone at the very end. I think everyone has the right to have someone by their side. Like Nancy said, I too, don't want to be found dead on the floor at home.

I think dying with grace is what I hope for. It's who is with me, not where I am that will count for me. I guess I think of cleaning up after dying at home....sigh.

This is probably one of the most meaningful discussion boards that I have ever read.  I am not afraid of dying, in fact there were times during chemo that I thought I was going to and didn't care if I did.  I just curled up in my bed with my little chihuahua Sammy and felt safe.  I dont know if my husband could do it (hospice).  He had a hard time handing me tape to change my own bandages after surgery.  God love him, he just looked so scared.  But again, having been there with my mother, whose death was peaceful(pancreatic cancer), if I had to do it for someone like my uncle who bled out and didnt want me there, I dont know if I could do it.  I also do not do well with body fluids....my own included.  I look back and wonder how I did it with 3 kids and all their childhood injuries and sicknesses.  I guess you just do what you have to do when the time comes.

Interestingly...my sister tells people all the time how she took care of my Mom when she was dying of cancer.  She came 3 times in 1 1/2 years and met them at the hospital in Phila. once.  I was there every day (except 1) for the whole time and was with her when she died.  My siblings were not.  My father to this day has thrown that up in my face..I had to work alone because my co-worker was sick.  Family can either be very supportive or a bunch of dysfunctional schmucks.  I also do not have anything to do with this sister.  When I told her I had bc she said that she hopes she doesn't "catch it".  I never heard from her again...not a card, flower, or word of encouragement.  She just went to her shore house for the summer and that was that.  My other sister talks to me everyday....thank God for her and my daughter.  They have been a endless source of encouragement.

When my time comes, I hope that I can just die with dignity surrounded with those who really love me.

Deb

When my father-in-law was at the end stage, he wanted to go to a war veterans hospital in Brisbane, Australia, which was 3 hrs away by car.  My husband was the only one left in the immediate family to take care of things and he also had to work, so it fell to me to do as much as I could do.  DH visited his father before flying out to work, fully expecting to see him again when he returned.  I would  drive 3hrs to visit with Dad spend 2hrs there and then do the 3hrs again, because I had kids in high school etc,.  After finding out that his married sister was away on holidays (with her lover), Dad's widowed sister spent almost 24 hrs a day at the hospital, caring for him.  Mind you these women were in their late 60's but hated each other with a passion.  Dad died the same day that the sister came back from her 'holiday,' which also happened to be my youngest sons birthday.  Even though she didn't get to visit with him before he died, she always said that he waited for her to come home before he passed away.

It fell to me to arrange the funeral and the details thereof.  Whilst in the middle of this, one of the relatives rang me to ask, 'How is Ron getting home?'  It took me awhile to realise that she meant my father-in-law, not my husband with the same name, and then I burst out laughing.  

I had a mental image of my f-i-law, dressed in his pyjamas, sitting on seat on a train, 'traveling' home for his funeral.

I don't think she was impressed with my sense of humour, but boy, did it relieve my stress at that time.

Sheila.

I live in the UK and when my brother was dying of lung cancer in the USA I took compassionate leave from my job and went to help my SIL take care of him in his final weeks. Yes I was very lucky to be able to take leave from my job and lucky to have the opportunity to care for my brother.

Neither my SIL nor I had nursing experience but we had help and advice from the dr and a nurse as well as several good friends. We brought my brother home from hospital the day after I arrived because it was what we all wanted and looked after him there until he passed. It was very hard but I would do it again in an instant. With all the cleaning up and bodily fluids involved I still regard this time as a privilege. We had some humorous moments to remember as well as the bad ones. It may not suit everyone but when it comes to my time I would like something similar.

If it were up to me its absolutely fine.  We always need a good laugh.

Donna

Okay, had an uncle that lived in Boston, we were the only family living in Michigan.  He was larger than life but was a bad alchoholic.  He would say he was coming for a visit and never show.  Someone would find him passed out somewhere in an airport - like Texas - (who knows how he got there) and would call my mom.  So eventually he died in a VA in Boston.  My mom makes arrangements for him to be flown to Michigan for burial.  Yea....he ends up lost.  The airlines couldn't find him and he ended up in another state!  They finally found him and with major apologies, sent him to us in Michigan.  I can tell you, we all STILL laugh about my uncle getting lost for a final time.

Amy

Wow this has been an interesting thread

I guess I have thought about dying at times....but then I put it to the back of my mind....this may sound weird but I feel like if I give in and accept that Im gonna dye then I will.

I want to fight this for as long as possible, to me it feels like i am giving cancer power by talking about how its going to take me.  I dont want to give it anymore power than it already has.

But in the few times I have thought about the dying process....I am confused about this, as when I was in my early twenties my Auntie was battling cancer, she battled for five years and then it finally took her.  She was the Queen in her house and she was an open and lively woman to be around.  The day that she died we got a call from my Uncle to say that she had passed in his arms.  My dad and me and my 5year old son and my grandmother all rushed to the Hospice place...we got there before any of her family...which was shocking, as we arrived an hour after my uncle called us and her children did not arrived for another hour after us.

When we got there we went into the room and there was my uncle still holding her....it was so sad....but the one thing that I will never forget is that there was this woman that was flamboyant and had a huge main of hair....here she was lying in this bed with no hair, she had withered to nothing and it almost looked like a small child in the bed, not the woman I remembered.

I have never forgotten that moment of how she looked and how shocked I was.....but my uncle had been with her....so for her I guess it was good.

When both of my grandparents died, they both died alone in their rooms in their nursing home as we were not told of their decline.  I loved my grandparents very much and it still hurts to think that they died alone with none of us there.  If we had known we would have been there till the end.

So I am totally confused....and scared....cause I know the ends not going to be pretty.....and Im a big chicken.....

Annalisa

I am an RN, and I did Hospice work for a while.  I considered it a great honor to be with someone during their final moments. 

My mom was an ICU nurse in a veteran's hospital for decades and she has said many of her patients would wait to die until their family had left for the night. These were older men, though, WWII vets. So they may have had a different mindset. Perhaps they wanted to protect their loved ones from the pain of losing them, so they'd hold on while the family members were there and only let themselves relax and die when their families were gone.

--CindyMN