If you were put in hospice care - Would you tell family/friends?

[marbel]

It would be weird to me, but my dad did the same thing.

 

We totally ignored his wishes and had a giant funeral anyway.  My mom doesn't want a funeral either, but she's also getting one.  It's not for the deceased, it's for the grieving.  Funerals help gain closure.

 

 

I cannot even begin to imagine my dh or children disrespecting my wishes in such a manner.  Wow.

I have mixed feelings on this. I get not wanting to go against someone's wishes.  OTOH,  I expect not to know or care what people do after I die.  (Of course I don't know for sure.)  I don't plan to leave instructions though I have told my husband and kids:  no open mic at the funeral.   And please don't let them play "A Mighty Fortress" slow and like a dirge, like it was done at my mom's funeral. 

 

I agree that funerals are for the living.  I don't think it's up to me to tell people what to do after I'm dead.  If it gives my loved ones some measure of comfort, why wouldn't I want that for them?

[SparklyUnicorn]

I have mixed feelings on this. I get not wanting to go against someone's wishes.  OTOH,  I expect not to know or care what people do after I die.  (Of course I don't know for sure.)  I don't plan to leave instructions though I have told my husband and kids:  no open mic at the funeral.   And please don't let them play "A Mighty Fortress" slow and like a dirge, like it was done at my mom's funeral. 

 

I agree that funerals are for the living.  I don't think it's up to me to tell people what to do after I'm dead.  If it gives my loved ones some measure of comfort, why wouldn't I want that for them?

 

Yeah I want to give my family permission not to feel the need to spend a lot of money on it or make a fuss, but if that is something they want to do, hey I'm dead and doubt I'll care and even if for some reason I would know, I would understand because it's their thing, and at that point...totally not about me. 

 

But if I'm dying...I feel no qualms about being selfish. 

[ErinE]

(Ok, I'm sharing here, but you don't really know me, that feels different)

 

:grouphug:

[73349]

Not wanting visitors makes perfect sense to me, but not notifying siblings sounds kind of awful unless there's a huge backstory.

[Callie]

Oh see that would not bother me.  I'm dead.  And I agree that funerals are for the living.

Responding to Marbel also as I cannot multi quote.

 

I just have a lot of crazy backstory and have no relationship with our families.  Lots of pill popping, alcoholism and untreated mental illness.  We left that lifestyle and never looked back.  I do not want any of them causing a ruckus for my dh and children.  An example would be a fist fight and then someone pulling a gun and firing it.  Happened EVERY holiday in dh's family.  Every holiday.  My kids have never seen it because we left the area and never took them back.

 

I could write a novel on things I witnessed or had said to me as a child.  Scarily dh had it worse.  We keep it hidden and we managed to become totally normal upstanding middle class people.  Who work and don't drink or drug.  Nope don't let them know I died they'd want stuff and they'd make a scene.

[umsami]

I would tell close friends and people I want to say good bye to.

 

But, DH's family is the complete opposite.  They have secret, don't tell anybody triple bypasses, because they don't want to bother anybody and feels everybody has enough to worry about anyway.

 

People are different.  I would feel hurt, though, if it was a sibling, parent, or child and I wasn't told (assuming we didn't have a toxic relationship).

[marbel]

Responding to Marbel also as I cannot multi quote.

 

I just have a lot of crazy backstory and have no relationship with our families.  Lots of pill popping, alcoholism and untreated mental illness.  We left that lifestyle and never looked back.  I do not want any of them causing a ruckus for my dh and children.  An example would be a fist fight and then someone pulling a gun and firing it.  Happened EVERY holiday in dh's family.  Every holiday.  My kids have never seen it because we left the area and never took them back.

 

I could write a novel on things I witnessed or had said to me as a child.  Scarily dh had it worse.  We keep it hidden and we managed to become totally normal upstanding middle class people.  Who work and don't drink or drug.  Nope don't let them know I died they'd want stuff and they'd make a scene.

 

Well now that sounds like crazy, toxic relationships and not at all what I was picturing.  Yeah, I can see some circumstances like that.  Still, no one can control what people do.  I guess if I had family like that I'd give my husband and kids "permission" to stay away from anything that branch of the family planned. 

 

:grouphug:

 

Edited June 17, 2016 by marbel

[SparklyUnicorn]

Responding to Marbel also as I cannot multi quote.

 

I just have a lot of crazy backstory and have no relationship with our families.  Lots of pill popping, alcoholism and untreated mental illness.  We left that lifestyle and never looked back.  I do not want any of them causing a ruckus for my dh and children.  An example would be a fist fight and then someone pulling a gun and firing it.  Happened EVERY holiday in dh's family.  Every holiday.  My kids have never seen it because we left the area and never took them back.

 

I could write a novel on things I witnessed or had said to me as a child.  Scarily dh had it worse.  We keep it hidden and we managed to become totally normal upstanding middle class people.  Who work and don't drink or drug.  Nope don't let them know I died they'd want stuff and they'd make a scene.

 

Oh I know all about that.  ; )

 

But still...if they want to go crazy and what not...I'm dead. 

 

[SparklyUnicorn]

Not wanting visitors makes perfect sense to me, but not notifying siblings sounds kind of awful unless there's a huge backstory.

 

That might not be possible or might be worse.  What should he say?  "I'm dying ,but don't visit me."  That seems meaner than just not saying anything.  And they might not respect his wishes either.

[marbel]

That might not be possible or might be worse.  What should he say?  "I'm dying ,but don't visit me."  That seems meaner than just not saying anything.  And they might not respect his wishes either.

 

Yeah, I think that is difficult.  I have a relative with whom I have a pretty difficult relationship.  As I said upthread, this person would manage to make it all about her, and be overly dramatic, weeping loudly if not outright screaming.  It would be easier on everyone to have her stay away, but then again I don't know that I'd want her last memory of me to be my saying "no, I don't want to see you before I die."   

 

:grouphug: to all who are dealing with such things. 

 

[Callie]

Oh I know all about that.  ; )

 

But still...if they want to go crazy and what not...I'm dead. 

 

You actually made me laugh out loud :)  Yeah I'm dead, but I still want to be a controlling bitch from the grave (or no grave because I've been cremated) lol

[redsquirrel]

That might not be possible or might be worse.  What should he say?  "I'm dying ,but don't visit me."  That seems meaner than just not saying anything.  And they might not respect his wishes either.

 

That happens all the time, and it doesn't have to be mean if it is handled well.  People get told that someone is in hospice and and they are not accepting any visitors.  Sometimes notes, cards or letters are accepted instead of a visit. I've seen that often.  That is what the funeral is for, to allow those people to say goodbye.

 

I guess some people might show up anyway, and that is when family has to hang tough and say 'no visitors, but we'll pass on your message'. 

 

And people's wishes don't get honored all the time.  My aunt told me that I was supposed to dig up her dead dog and bury it next to her.  I told her I would, but I knew it wasn't going to happen.  She never even told me where the damn dog was buried and I didn't ask. No one else had any idea either. She said if I didn't do it she would come back to 'haunt me', lol.  It's been about 10 years and so far, no sign of her....because she is dead.

[Joules]

We recently enrolled one of our children in hospice & have only told a few close friends & some family. Not really something I want to announce on facebook, iykwim.

 

We don't plan to have services or an obituary either. I feel like birth, adoptions, & deaths are private events.

 

I realize others like to have a room full of people at a birth or a big adoption gathering, to each their own.

 

Friends will spread the word for us after he passes, again, not something I plan to post publically, I don't think.

 

(Ok, I'm sharing here, but you don't really know me, that feels different)

:grouphug: :grouphug:  :grouphug:  I'm so, so sorry  :crying:

[patriciatx]

I think everyone deals with things differently and I would just respect their wishes. 

 

My thoughts are with your family. 

[Joules]

Having gone through hospice with my mom, I can tell you another reason not to tell some people.  Sometimes hospice is a choice, a patient and immediate family decide to stop treatment and enjoy life best they can at the end.  

 

For people outside the inner circle, sometimes the denial phase lasts a long time.  They don't believe that this is the end.  They want to research every treatment and insist the patient try one more thing.  They berate the spouse for "letting" their loved one "give up."  They bring experts and information and stories of people who fought and had a miracle.  

 

I know that it is those people's grief process, but it ruins any peace for the nuclear family at the end.

[SparklyUnicorn]

That happens all the time, and it doesn't have to be mean if it is handled well.  People get told that someone is in hospice and and they are not accepting any visitors.  Sometimes notes, cards or letters are accepted instead of a visit. I've seen that often.  That is what the funeral is for, to allow those people to say goodbye.

 

I guess some people might show up anyway, and that is when family has to hang tough and say 'no visitors, but we'll pass on your message'. 

 

And people's wishes don't get honored all the time.  My aunt told me that I was supposed to dig up her dead dog and bury it next to her.  I told her I would, but I knew it wasn't going to happen.  She never even told me where the damn dog was buried and I didn't ask. No one else had any idea either. She said if I didn't do it she would come back to 'haunt me', lol.  It's been about 10 years and so far, no sign of her....because she is dead.

 

I didn't want visitors at the hospital when I had my first kid.  The exception was my parents.  My extended family was told this, but an aunt showed up anyway.  I did have them send her away.  I know, maybe that is mean, but what the heck.  I had not seen that aunt in many years and I really didn't want visitors at that point in time.  People were free to visit me when I went home and some did.  I was fine with that. 

 

That's the problem though.  People don't listen. 

[Ellie]

I am curious as to what people's take on this is. Obviously, I will abide by my in-laws' wishes, but I do find it strange and does not jive with the experience of death in my family.

My father-in-law was diagnosed with terminal cancer on Monday during a hospital stay.  His three children and their spouses (including me) and his wife know and are the only ones who even know he was in the hospital for the first or this the second time.  His three brothers and their families are not to be told until he dies.  They don't plan on telling any friends or colleagues  though they did retire several years ago. He and his wife were medical professionals. They do keep to themselves but don't have any apparent issues to keep them from their extended family.  

 

Am I the only one who thinks this is weird?  When my mom and brother were sick and eventually on Hospice, I went out of my way to contact people and let them know so everyone could say goodbye.  I needed the support of family and friends and anywhere else i could get it. 

 

And as you might guess, he doesn't want a memorial, funeral, burial or disbursement of his ashes. Not even an obituary.  It strikes me that he wants to simply disappear as if they will ease the grief of those left behind.  Or is it his coping mechanism? Curious. 

 

What say you?

 

Of course. They would want to know. So yes, to me that is weird.

 

My mother died 11 days after being diagnosed with lung cancer. I lived in California, she in Washington. Her husband called me and told me to come, and I did right away. I did not know until she was gone that she had not wanted any sort of memorial or anything; she and her husband had made arrangements for her to be cremated. I was staying at my brother's house; when she died, her husband called me and told me, and I drove right over. Her body was gone by the time I got there. I was angry, we were all angry, that she had wanted no memorial or a wake or anything.

 

It is the one request that I would ignore from a loved one, that there be no acknowledgement of his death. Friends and family want to get together and hug each other's neck and tell stories and remember. To pretend that nothing has happened does not, does not, ease the grief of those left behind. It is a singularly selfish request.

[Liz CA]

Ellie mentioned upthread that it was upsetting not to have a memorial service. What they do after I am gone I probably won't care but as a private person, I can relate to someone wanting peace for those last days. It's a lot to process and some people do not want others being uncomfortable, not knowing what to say, treating them like their time is short even though it may be. If everyone has that "I am so sorry" look on his/her face, it can get overwhelming. Certain family members - my mother among them - would drive me around the bend if I was diagnosed with something terminal.

 

I think people should be able to choose how to spend those last days and with whom.

[JFSinIL]

A lovely neighbor passed on, leaving behind three young kids and hubby (colon cancer, not caught until she was already stage 4). Her last few days at home, with hospice, I visited, more for her hubby to give him a break than because my neighbor even knew I was there :-( A month or so after her passing, they held a service at their church in which everyone was encourage to speak up and share a moment or memory of Stacy. After an awkward pause, almost everyone took a turn to share a memory. But there was no funeral etc. - she was cremated, and later that summer her close family went up to where they had loved to vacation and sprinkled her ashes in the river. I compare that to when each of my in-laws passed, there were wakes, long funerals, post-funeral long meals, etc. But in each case, it was more what the surviving family needed that counted more than anything else.

 

I've told my kids, that if we are still in this house when I go, to stick me in the ground under the pine tree with all the buried pets :-) and save money.

Edited June 17, 2016 by JFSinIL

[Spryte]

I don't find it weird.

 

That said, I think the caregivers might need support, and as far as that goes - they need it.

 

I was the primary caregiver for my best friend, years ago. We had 8 months. Her mom or brother would fly out sometimes, too, so I had their support, too. She was never in hospice, but she was very private. We did not inform many. We also had hope until the very end, that she'd get a transplant. The last weekend of her life, I knew it was the end, and I called our department head, who had directed her doctoral thesis. At that point, I simply needed the support. The dept head and her partner rallied, and took over some of the tasks I simply could not do. They did visit, but it was brief, and sweet. I am forever grateful to them. And tearing up now, oops, it's been an emotional week.

 

So, yes, I'd support the dying's wishes.

[redsquirrel]

I didn't want visitors at the hospital when I had my first kid.  The exception was my parents.  My extended family was told this, but an aunt showed up anyway.  I did have them send her away.  I know, maybe that is mean, but what the heck.  I had not seen that aunt in many years and I really didn't want visitors at that point in time.  People were free to visit me when I went home and some did.  I was fine with that. 

 

That's the problem though.  People don't listen. 

 

But it wasn't a problem. You said no and the hospital sent her away. I mean, it was a problem for her because she didn't listen, but whatever.

 

 

 

I see this all the time on my churches listserv. We get informed when someone has moved into hospice with regularity. You say no visitors, please just send cards or letters (no one says you have to read or even see the letters) and that is the job of the hospital or family, to send people away if they don't listen. I've seen "XYZ family requests no visitors during this private moment, but they do request you hold AB in your thoughts" So, they don't even want the letters.

 

Sometimes someone does request visitors though. It might say "AB is resting comfortably and requests visitors come to share a memory of a happy time."  I've seen "AB is not aware of her surroundings at this time, but if you would like to come and read to her or just sit and hold her hand please let the family know" 

 

We can't control what everyone does.  But to cut someone off from even knowing a sibling is going to die in the near future.... there is a story there.

[foxbridgeacademy]

It would be weird to me, but my dad did the same thing.

 

We totally ignored his wishes and had a giant funeral anyway.  My mom doesn't want a funeral either, but she's also getting one.  It's not for the deceased, it's for the grieving.  Funerals help gain closure.

:confused1:

While I'm 99% sure my family will honor my wishes, they want the same thing for themselves, I wonder if I can put it in my will that they don't inherit anything unless they comply?

[Murphy101]

I don't believe anyone necessarily needs to feel that way personally, but I think people at this time of their lives may not want to be on display in a vulnerable state for a bunch of people to see.

 

My mom wouldn't even change clothes in front of her daughters until she had heart surgery in her 70's and had no choice. I know darn good and well she wouldn't have appreciated people seeing her in some situations at the end of her life, and certainly not in those last couple of days. Yes all of her children were with her, and most of her grandchildren were able to come in and say goodbye, but I think it is certainly acceptable to want the people around you limited at the very end of life.

 

One of the things that stuck out in my mind in the last few months my mom was alive was when we took her to her sister's funeral. We always tried really hard to help her look her best when we'd take her out (making sure her clothing was clean and neat, her hair was clean and brushed, etc., - things she couldn't necessarily do on her own, and because of her dementia, probably wouldn't have), and my 80 year old aunt said to us, "Thank y'all for making sure your mom is still able to have her dignity, even when she doesn't know it." For many people, that is very important.

I think all that you mention is very normal. To me, that should just be a given, so I find it sad that it isn't. Bc I agree that is very important to most people. Sadly I've seen too many nursing home and hospital situations where the person on the bed is treated like meat. Things like not taking effort to cover privates or shut the room door so that every janitor walking by the room doesn't see grandma as they are changing her catheter for example.

[redsquirrel]

:confused1:

While I'm 99% sure my family will honor my wishes, they want the same thing for themselves, I wonder if I can put it in my will that they don't inherit anything unless they comply?

 

I guess that's one way to find out which people like more, you or your stuff, lol.

[Murphy101]

Well now that sounds like crazy, toxic relationships and not at all what I was picturing. Yeah, I can see some circumstances like that. Still, no one can control what people do. I guess if I had family like that I'd give my husband and kids "permission" to stay away from anything that branch of the family planned.

 

:grouphug:

 

The problem is no one on the other side ever thinks they are toxic. Never. No, they always always always think everyone else is just being so bitchy and unfair to them. In many of these cases I suspect people say nothing bc they know if word gets out, people will just do whatever instead of respecting the request.

 

I guarantee just saying please don't visit so the very closest loved ones, like spouse and children, can have every possible moment or privacy is not going to be respected by those people. Because they feel they should be there. Because they want... Because they need... Because they think...

 

And you know what? I don't give one dang what they need or want or think. How dare they impose anything about themselves on the dying person or the persons the dying most cares about? The people who matter most to me won't need to be notified or told what to do. They are a daily part of my life.

 

If my dh decides to do something different from what I wished bc HE needs it, that's very different from someone else deciding they know better and disregarding OUR wishes and also thinking they know better what my dh and dc should have in their grief.

[Katy]

I cannot even begin to imagine my dh or children disrespecting my wishes in such a manner.  Wow.

 

He didn't want us to waste money. I get it.  I also understand that he was a bit out of his mind and we spent years preparing for his death. I was very young. His funeral was what my stepmother wanted, and I totally agreed with her. We did honor the place he chose to be buried, but demanding no service at all is just selfish.  It's selfish.  And I refuse to let you or any other presumptuous, callous, judgmental jerk color the way I chose to grieve the death of the person I loved most in the world.

 

Guess what?  If you want to be in control of everything, don't die. Especially don't spend years dying when your children are young.  What your family does after your death isn't something you get to control.  They choose the way they grieve, and there is nothing you can do about it.

[SparklyUnicorn]

But it wasn't a problem. You said no and the hospital sent her away. I mean, it was a problem for her because she didn't listen, but whatever.

 

 

 

I see this all the time on my churches listserv. We get informed when someone has moved into hospice with regularity. You say no visitors, please just send cards or letters (no one says you have to read or even see the letters) and that is the job of the hospital or family, to send people away if they don't listen. I've seen "XYZ family requests no visitors during this private moment, but they do request you hold AB in your thoughts" So, they don't even want the letters.

 

Sometimes someone does request visitors though. It might say "AB is resting comfortably and requests visitors come to share a memory of a happy time."  I've seen "AB is not aware of her surroundings at this time, but if you would like to come and read to her or just sit and hold her hand please let the family know" 

 

We can't control what everyone does.  But to cut someone off from even knowing a sibling is going to die in the near future.... there is a story there.

 

Then again, had she known which room I was in, she could have walked right into the room. There was no check in procedure.  I specifically asked for no visitors and when they went to look up the room for her they saw that information. 

 

Siblings..unless the relationship was strained...I'd allow in.  Same with my children.  And my parents (unless the relationship was not good).  And my spouse.  Anyone else?  Well sorry. 

 

But I dunno, maybe I'm a bit of a weirdo.  The day I went to the hospital on the day my mother died I really did not want to go.  I was essentially forced to go.  She was completely out of it.  I knew she was going to die before she died and had spent time with her when she was not out of it.  It just was not the way I wanted to see her.  She would have understood that.  So I don't get why I was forced to go. 

[Spryte]

He didn't want us to waste money. I get it. I also understand that he was a bit out of his mind and we spent years preparing for his death. I was very young. His funeral was what my stepmother wanted, and I totally agreed with her. We did honor the place he chose to be buried, but demanding no service at all is just selfish. It's selfish. And I refuse to let you or any other presumptuous, callous, judgmental jerk color the way I chose to grieve the death of the person I loved most in the world.

 

Guess what? If you want to be in control of everything, don't die. Especially don't spend years dying when your children are young. What your family does after your death isn't something you get to control. They choose the way they grieve, and there is nothing you can do about it.

((Hugs))

 

I'm so sorry for your loss. That must have been so hard, and must still hurt.

[Mothersweets]

We recently enrolled one of our children in hospice & have only told a few close friends & some family. Not really something I want to announce on facebook, iykwim.

 

We don't plan to have services or an obituary either. I feel like birth, adoptions, & deaths are private events.

 

I realize others like to have a room full of people at a birth or a big adoption gathering, to each their own.

 

Friends will spread the word for us after he passes, again, not something I plan to post publically, I don't think.

 

(Ok, I'm sharing here, but you don't really know me, that feels different)

 

:grouphug: :grouphug: :grouphug:

[fairfarmhand]

Is it selfish to not want to have a huge funeral when a loved one dies?

So hypothetically"

For instance, say my dh dies. Me as a private person chooses to have a small service with no visitation. Because in my grief, I don't want a lot of people around. I have my kids, my parents, his brothers and mom. But outside that circle, maybe a handful of close friends.

 

My dh knows a ton of people, most of whom I do not know. I don't want to hug them. I don't want to cry with them. In grief, I find these things intrusive, not supportive.

 

Is that selfish? Do those who know him from other settings get to share those moments?

 

Personally, I feel that when I lose a close loved one and I am making the decisions, I get a pass on selfishness.

Edited June 17, 2016 by fairfarmhand

[Murphy101]

Is it selfish to not want to have a huge funeral when a loved one dies?

So hypothetically"

For instance, say my dh dies. Me as a private person chooses to have a small service with no visitation. Because in my grief, I don't want a lot of people around. I have my kids, my parents, his brothers and mom. But outside that circle, maybe a handful of close friends.

 

My dh knows a ton of people, most of whom I do not know. I don't want to hug them. I don't want to cry with them. In grief, I find these things intrusive, not supportive.

 

Is that selfish? Do those who know him from other settings get to share those moments?

 

Personally, I feel that when I lose a close loved one and I am making the decisions, I get a pass on selfishness.

Gosh I hope so. My dh is like that too. Very social and makes friends easily.

 

But I only know a few of them and would feel like you do.

 

That said, I'm Catholic. All masses are open to the public. Because it's a mass. A wedding mass, a funeral mass, technically, they are all just as open to the public as any other daily or Sunday mass. So I'd likely be a bit more tolerant at the funeral, but I have no idea how I'd handle the social obligations aside from that. I really don't know. I can see just wanting to crawl under blankets on the sofa with the kids at home and I can also see being okay with a rip roaring wake. Idk. But I do know I'd have a hard time forgiving anyone who didn't respect however me and the kids felt we needed to be during that time.