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

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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?

Edited by J&JMom

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I don't think it's weird, but I guess my family is kind of like that so it's normal to me. When you feel that bad and are dealing with death on your doorstep, the last thing I would want to have to do is deal hospitably with people or try to make other people feel better. I would want to save my energy for those who meant the most to me, which would be my very immediate family. Also, I wouldn't want to burden anyone with the actual funeral, but understanding that funerals tend to be for the living and not the dead, I wouldn't make a federal case out of it.

 

That being said I don't think people who feel the complete opposite are odd either. It's simply a personal preference.

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Yes, I think it is unfortunate & sad, but I do know of people who have done something similar.   I think if I had a friend who was dying and I didn't even know about it until after they had died AND they weren't even going to have a memorial or funeral, I would feel very betrayed by the friendship.

 

I've heard of people not wanting the doctor's to even tell them if they are dying.  It's pretty rare, and I think it's very old-school., but it does happen.

 

When my MIL's second husband was dying he refused to have anyone visit him, including his children. It was just him and my MIL.  He died pretty quickly after diagnosis as it wasn't one of those long deteriorating diseases like Alzheimer's or Lou Gehrig's, but it was hard not to ever see him again or say goodbye.  We always chalked it up to  his Argentinian heritage.

 

OTOH, it's their decision and I'd have to respect that.    I think I might be tempted to talk with them about that if my relationship with them was close enough.

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My dad is the youngest so I have lots of very old uncles, aunts and their spouses. One late uncle loves company and so everyone was told when he was in hospice care including visiting hours and such.

The rest of my relatives prefer not to have that many visitors when terminally ill and my elderly relatives are the kind who don't take no for an answer. So it was easier not to tell so that the ailing relative can have time with grandkids without everyone else self inviting.

 

My cousins generation and down are much more respectful of wishes and would acknowledge the news while staying away if requested. However as long as there is a funeral, all will show up just because they need closure.

 

No one in my extended family has ever ask for no obituary so that would be weird to us. Some obituary are full page while some are smaller depending on the wishes of the departed relative. It is usually at least half a page if nothing was specified because my extended family is big.

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Some people just cannot handle the rush of visitors when announcements such as these are made. They prefer together time with their closest, immediate family and especially so if the end likely o come quickly.

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I haven't really thought about this before.  

 

If I were to go into hospice right now, I would not want visitors except for those that I'm really comfortable with. I don't like having visitors in my daily, everyday healthy life either.  :blush: I would want to be able to say good-bye to my spouse and children, my parents and my sister.  I "think" I would want to see my priest.  Other than that, no.

 

I've told my husband that I don't care what he does with my body etc., or what memorials he holds.  Those things are for the living, not the dead, and he can do what he wants, or not.

Edited by Upward Journey
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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?

 

 

I would defer to what the person dying wanted, too. I don't think it's so weird, though, to want to die privately.   I completely understand not wanting others to know.  I don't think it is out of a lack of love or concern for others who would want to know, but rather that, for some people, they can't bear laying their whole mortal end out for viewing.  I absolutely get that. And, the thing about no memorial or funeral.  I get that, too.  I want no memorials, no funeral, no headstone.  If my loved ones feel like they need to get together, then have a party, play really loud music -- I'll suggest the Ramones for authenticity's sake.  But no fussy funerals and memorials and wakes and that lot.  No casket viewings either.  I want to be cremated and my ashes worked into the south field in spring.  I'd prefer it be planted in flax, if possible.  I'd like to be a part of a beautiful flax field -- bloom and seed off and start again.  That'll be nice.

Edited by Audrey
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I'm sure everyone handles death differently.  I think it's perfectly reasonable that each person can decide how they want to deal with it, whether it aligns with your way of thinking or not.

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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.

?

What I read here is

 

1. Other people want to say goodbye and

 

2. You wanted support

 

When you are dying, your life can become a lot of 'goodbyes' and for some people, that is simply exhausting. If he wants to decide how to spend time remaining, he might realize that saying goodbye to old colleagues and friends is just not something he wants to expend limited time and energy on. I can see wanting to spend a lot of time with the few people I most love rather than with a list of people I care about but who are not my most primary beloved.

 

I can see just wanting to be alone with my husband and children if I were dying, and I definitely would want time with my husband if he were dying. I would just want to shut the world out and be alone together.

 

I did need support when my dad was dying - but I needed a couple of friends - not a group. Maybe they are the same way and don't realize you would find comfort in having more people to share it with. vut even if they do know that, I still think their desires are normal and take priority.

Edited by Danestress
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Seems normal to me....they are keeping it to the close circle. The siblings dont seem to be in that category.

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I am an only child, but I would tell my close friends (we consider them family). DH could tell whomever he needed to for his support.

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I think either perspective is perfectly fine. I love my friends, but I can understand their wanting to focus on their most exclusive and closest loved ones too. Other people want to make sure they see and hear from everyone. Neither is wrong and both should be respected.

 

I think also the key is what the closest person to the dying person wants. I know I'd want the living to give more consideration to my husband and kids than themselves. A surviving spouse might not appreciate having to be "on" for a constant stream of social visits.

 

Personally, I will be extremely angry if anyone tells my side of the family anything. If they don't find out until 6 months after the funeral - I'm fine with it. And I doubt I'd call them about my dh or dc either. It's just the last thing we'd need at that time. But I'm not close to them either. I go months and months with no contact, so it'd be odd to suddenly have them pretend some close connection right in the midst of our grief.

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I've known two people who chose not to share this with family/friends.  In the one case it was an elderly relative and somewhat of a recluse.  His only close relatives alive were his two children.  His wife and all his friends died before he did.  So I could understand his not wanting anything done because in his opinion there wasn't anyone left to come to a service (his children were with him when he died).

 

The other was a young woman who died from complications 10 years after a horrific car accident that took her mother's life.  She only wanted her dad and siblings with her at the end and had told her dad this  before so he knew not to call anyone.  The hard part was my sister was her mom's best friend and had stepped into the mother role for this young woman after the mom died.  She visited this young woman at least one a week, picked up personal items for her so her dad (who was her full time caregiver after the accident) didn't have to etc.  It hurt my sister terribly to be told the young woman had the flu and wasn't up for a visit and then the next week be told she was dead (she was actually dying the week before but the family didn't share that out of respect to the young woman's wishes).  No one really knows why those were her wishes and I give the family credit for following them but it was so hard on my sister who had been so close and so involved for 10 years to be cut out at the end and not be able to say goodbye.

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We ran into this with DH's grandfather last year. We honored his wishes, but it was hard. He didn't want people to see him in the state he was in. I can't/couldn't really blame him for that.

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I can understand not wanting visitors, but not wanting actual family notified seems almost cruel.  It makes me assume there is bad blood between them.

 

A friend from church has a mom in care. Not hospicare, but her mom needs a constant care. Her mom was very, very firm that she wants to stay in her own city and doesn't really want her kids to visit her very often. She just doesn't want them to see her as her illness progresses. She knows she can't keep her kids totally away, but she hasn't made it easy. For her, it's her only bit of control over what is happening. I would assume it is the same with your ILs.

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 I think if I had a friend who was dying and I didn't even know about it until after they had died AND they weren't even going to have a memorial or funeral, I would feel very betrayed by the friendship.

 

 

 

That's making someone else's death about you, though. 

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Not weird.

 

I'm very private and don't want people clustering around me.

 

I would choose to tell those whom I want around me. Everyone else, while I know they care will just add to my stress at a stressful time and I don't want my family burdened with a pile of phone calls and questions.

 

People (well meaning) can do strange things with grief. They ask intrusive questions. Come over unannounced. Bring by food that may or may not be eaten.

 

While they mean well, when you're in the midst of those situations, it may not help.

 

I hate unannounced visitors. I hate crowds. I hate people asking personal questions. Doesn't matter how nice they are and how good their intentions are, When I'm grieving. Leave me alone.

 

But I understand those who do want to share these things with others. There are all kinds of people in the world.

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My grandma is currently with hospice care.

 

We visited beginning of May and had no indication anything was wrong. Talked several times through May and she didn't say a word. My aunt called me a little over a week ago to tell me she was on her way. (She lives 10 hours away). The next day I get the call that Gma has cancer. No visitors other than pastor and hospice.

 

We talked Tuesday evening for quite a while and she let me know she was back home for work and would be back here this weekend. Hospice nurse was visiting twice a day. Yesterday I got a text that she was on her way back here. Still no reply to my texts, so I have no idea what's happening. This is what Gma wants. It sucks.

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That's making someone else's death about you, though. 

 

No. A friendship is a relationship. That means two people are part of it, it is ours. It is our relationship, it is about us. If I find out that a good or close friend was ill and dying and kept that information from me, then I am allowed to question what that says about our relationship because a relationship involves both of us.  It isn't making their death 'all about me'...it is saying that I am questioning things about our relationship. Now, it may be that our relationship wasn't as deep or as special as I thought it was, fine. I am allowed to have feelings about that and will have to work through that. But I am allowed to question and wonder about the state of our relationship without being accused of making it about me.

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What I read here is

 

1. Other people want to say goodbye and

 

2. You wanted support

 

When you are dying, your life can become a lot of 'goodbyes' and for some people, that is simply exhausting. If he wants to decide how to spend time remaining, he might realize that saying goodbye to old colleagues and friends is just not something he wants to expend limited time and energy on. I can see wanting to spend a lot of time with the few people I most love rather than with a list of people I care about but who are not my most primary beloved.

 

I can see just wanting to be alone with my husband and children if I were dying, and I definitely would want time with my husband if he were dying. I would just want to shut the world out and be alone together.

 

I did need support when my dad was dying - but I needed a couple of friends - not a group. Maybe they are the same way and don't realize you would find comfort in having more people to share it with. vut even if they do know that, I still think their desires are normal and take priority.

<3

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Honestly, having recently dealt with my mother's death and the way she was at the end, I would tend to keep it to my very immediate family. My mom would have been pretty mortified if there had been a parade of people seeing her there at the end, even though she wouldn't have known. I preferred to keep her dignity intact, and I think during the dying process, one deserves dignity.

 

We had one cousin show up because he lived nearby and I just did. not. like it. We have my oldest sister to thank for that because she seemed to be of the mindset that even people who hadn't bothered to see my mom in a couple of years should have been able to show up during those final hours. It was very frustrating to me.

 

I have told my children that I want NO ONE to see me other than my immediate family when I am at that point. Now if I went into hospice terminal, but still aware and not in terrible pain, I might want to see some siblings and friends early on then nix, or have my family nix, the visitors when my condition worsened.

 

I also want direct cremation and only a family/friends gathering at someone's home (mine, one of my kids', whomever's). Obituary is fine, but no funeral home service. I'm over the funeral business.

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Now I do think the ..shame? For lack of better term... Of dying is quite awful in our society these days. I guess it's because people so rarely spend any time with the very ill and all that seeing people who need such end of life care requires. No one should ever feel they are losing dignity bc of how they look, whatever bodily help they need, or be ashamed for not being able to hide their pain. I think it is heartbreaking that people unnecessarily isolate themselves from those they love because of that.

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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.

Edited by StaceyinLA
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I could see my dad doing this.  I'm not quite sure what the reasoning is behind it.  He's on good terms with his remaining siblings and nieces and nephews, but he's already said he doesn't want a funeral or obituary or anything.  

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I don't know what I would do.  I can think of certain people I wouldn't want around during such a time.  I have a few relatives who would be overly dramatic in their grief and would make the whole thing about them (how sad they were, how much they were going to miss me, etc). 

 

A friend of mine died of cancer in her late 20s. I knew she was sick but didn't know she had gone into hospice until after she died.  Her sister told me that my friend had not wanted anyone to see her when she was so sick, and she wanted to focus her attention on her husband and infant son.  I was sad at not being given the chance to say goodbye but I could understand her perspective. There was a memorial service later, though. 

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I don't think it's weird at all and I think his wishes should be respected. It's his journey and he should be allowed to set the rules.

 

Without going into detail (mostly because I'm on an iPad) my mother's final days were in a situation where she couldn't make decisions or express her desires. So as the person who knew her and her wants the best I made the decisions for her. Those involved asking some relatives not to come. Others didn't listen to me and turned her deathbed into a crowded spectator event. She would have absolutely hated it. I will never quite fully forgive them for putting their wants above what I know she would have wanted. Talk about the ultimate "it's all about me" mentality!

Edited by Pawz4me
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Not much different than what I would do, except I would include my sisters on the visitor's list (I'm an introvert).  I definitely do not want a funeral, or at least the expense and carbon footprint of it all. I refuse to take up space after I'm gone, I want to be cremated and they can hold a small at home memorial type thing if they have to.  As for an obit.... why? No one knows me except family, no one would care if I were gone, other than family (which is the way I want it).

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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)

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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:

 

Friends of mine did the same with their child. They wanted to focus on family and a few friends during that time, no drama.

Edited by G5052
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Last summer my uncle was diagnosed with terminal cancer and was gone a few weeks later. I was the only relative who kept in touch, and I didn't find out until a lawyer contacted me, trolling for business. It took me another month of legal maneuvering with a different lawyer (naturally) to even begin the process of getting him buried and working with his affairs. 

 

I would have been there for him, but he chose not to contact me. And I respect that.

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Reminds me of the scene in the show ER when doctor Green's brain tumor was back and he knew he was dying but he wanted to keep going with normal life as long as possible since once people knew he was dying they would look at and treat him differently.  Your in-law may well not want folks looking at or remembering him as a dying man.  Respect his wishes.

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I don't think it's weird at all and I think his wishes should be respected. It's his journey and he should be allowed to set the rules.

 

Without going into detail (mostly because I'm on an iPad) my mother's final days were in a situation where she couldn't make decisions or express her desires. So as the person who knew her and her wants the best I made the decisions for her. Those involved asking some relatives not to come. Others didn't listen to me and turned her deathbed into a crowded spectator event. She would have absolutely hated it. I will never quite fully forgive them for putting their wants above what I know she would have wanted. Talk about the ultimate "it's all about me" mentality!

 

So sorry for your loss and that you had to deal with those relatives.

Edited by JFSinIL
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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.

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I feel exactly like he does.  No funeral or anything.  My dh & kids know to cremate me and put my ashes in a flower/butterfly/bird area that I have on our property.

 

I do not want any extended family around at all.  No weird trying to disappear notions I am just a private person.

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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: I will be holding you and your family in my thoughts. :grouphug:

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It doesn't sound strange or weird to me.  I believe everyone has the right to live, die and have the funeral or lack thereof of their choosing even if others would prefer something else.   

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Personally, I will be extremely angry if anyone tells my side of the family anything. If they don't find out until 6 months after the funeral - I'm fine with it. And I doubt I'd call them about my dh or dc either. It's just the last thing we'd need at that time. But I'm not close to them either. I go months and months with no contact, so it'd be odd to suddenly have them pretend some close connection right in the midst of our grief.

This sums it up for me also.  I will not contact anyone about dh or our children either.  And I have made it clear to my dh not to contact or inform them of my sickness or death.  I have no relationship or contact with them now and I cannot imagine the stress of them being around while I am either dying or grieving for my spouse.

 

And mental illness,  alcoholism and pills are involved with my & dh's families.  We chose a different life.

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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.

 

Individuals vary, but I agree with this. Even if you have a simple event at home with a few people to remember the person, I'd do it. I've seen it both ways, and those who go ahead and just have something, no matter how small, seem to do better.

 

My uncle that I mentioned earlier didn't get buried until 10 weeks after he died because of legal issues and then waiting for a VA burial. Our finances, family logistics, and work scheduling made it really, really hard for me to even consider being there. And frankly I wish that I had just done it. The grieving was harder than with family members where I had gone. This summer I'll finally get there, and I think that will help me immensely.

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There is usually a hospice counselor available to close family members. Have you considered asking a hospice counselor about this, for your sake? It doesn't sound abnormal to me, but maybe a hospice counselor can shed some light on why it's normal, to help you understand this.

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Not weird.

 

I'm very private and don't want people clustering around me.

 

I would choose to tell those whom I want around me. Everyone else, while I know they care will just add to my stress at a stressful time and I don't want my family burdened with a pile of phone calls and questions.

 

People (well meaning) can do strange things with grief. They ask intrusive questions. Come over unannounced. Bring by food that may or may not be eaten.

 

While they mean well, when you're in the midst of those situations, it may not help.

 

I hate unannounced visitors. I hate crowds. I hate people asking personal questions. Doesn't matter how nice they are and how good their intentions are, When I'm grieving. Leave me alone.

 

But I understand those who do want to share these things with others. There are all kinds of people in the world.

Agreed.

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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)

I pray your family has precious time together in your child's last days, and for those who remain to have the strength you need to see this through. I'm so sorry you are facing this.

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I also want direct cremation and only a family/friends gathering at someone's home (mine, one of my kids', whomever's). Obituary is fine, but no funeral home service. I'm over the funeral business.

Me too.  DO NOT spend our hard earned money or life insurance money on a funeral.  Absolutely not.  I want my dh/children to have that money for wants or needs.  I will not line the funeral homes pockets.  I want to cremated the cheapest way possible.  Same for dh.  

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I don't know what I would do.  I can think of certain people I wouldn't want around during such a time.  I have a few relatives who would be overly dramatic in their grief and would make the whole thing about them (how sad they were, how much they were going to miss me, etc). 

 

 

This is why I will not have mil around if my dh passes before me.  The dramatics.  What I witnessed after my bil died was horrible.  Not just a mothers grief, but a crazy lady who was so jealous that my sil was getting attention because her husband had just suddenly without warning died.

 

I'll never forget my sil who was basically catatonic telling mil she would gladly trade places with her (meaning mil getting all the attention instead of sil).  Friends of my bil/sil sat quietly (slack jawed) over mil behavior.  It was all about attention for herself and nothing to do with her dead son or his poor children who had to witness her antics.

 

Nope she will not be informed when my dh passes.  

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I would likely do the same thing.  If that is weird, so be it.  My reasoning? I don't want a bunch of people visiting me.  That would be miserable as an introvert. 

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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:

 

We chose to do much the same.  We found her/our time in hospice to be very healing after being run ragged by medical appointments.  We started all of our kids in grief/art therapy and enjoyed our time together. DD had a direct burial, with a private graveside service. 

 

TBH, I could not handle all of the drama of everyone else's grief. It was all I could do to hold things together to be functional for myself and my kids.  

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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:

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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.

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