Hospice, it's lonely...

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Hospice, it's lonely...

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Does anyone else find that when you have a loved one in hospice it's a lonely experience?

I mean, my husband is great, my mother-in-law is great, and I have a couple good friends, but I'm also amazed at how "invisible" I've become, or how "invisible" some so-called friends have become since my mother is in hospice.

I've never been the one to go run this monologue about all the details of my life, but you'd think a "how are you?" or a "how is your mother?" would be nice. I am not waiting for someone to ask a question to I can sob all over them, for God's sake. It'd just be nice to, you know, be asked after.

Grief is confusing, and I know I've been scared to bring it up, especially when I was much younger, but it's amazing that people you think are close to you suddenly get silent about the whole thing. This isn't just a casual Facebook friend who you "lol" some comment to now and then, either, but people you've known for years, decades even!

End of Life Hospice Loneliness

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((((((Hugs)))))))), Heidi!

I think that death is one of those subjects that makes most people feel tremendously uncomfortable, and hospice is part of that.

Many people are so worried about saying the wrong thing that they (we/I) think that silence is best.

I'm so glad that you've got a few good friends you can communicate with about this sad and painful time. Can you reach out to some of those who aren't communicating with you and assure them that it's okay to talk about your mom without offending you? No, it SHOULD'NT have to be on you to take the first step, but sometimes that's what it takes.

Feel free to come here and vent/sob/yell!

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Thank you, BarbBrooklyn. I agree I think people are afraid of the topic of death, that it's uncomfortable. When I was younger I'd be nervous to bring it up for fear of bringing up something potentially triggering, if that makes sense. (A bout of sobbing or whatever...)
I think just about anything is fair game in talking about a dying loved one, aside from "You SHOULD do this before they die" or "You mean she hasn't died already?"

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I'm sorry to hear about your mother. Has she been on Hospice for long? I can relate to what you are saying. People who knew my LO dropped out of her life as soon as she was diagnosed with dementia, so, they have no idea she is now on Hospice. No contact from any of them in 5 years. I guess, I got used to it. Have you talked to the Hospice social worker about it? I found the one my LO has to be very personable, kind and helpful. She offers a lot of insight and support in the grieving process. And, since, I'm the sole family member, with no real support from anyone, she volunteered to come and be with me, at anytime, if I need her. I thought that was very thoughtful.

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That's nice of her. My mother hasn't been in hospice for long, but she's been declining for many years. (Dementia, hard of hearing, delusions, growing weaker, diabetes …)
Yes, I did talk to the social worker. She was very nice. Also she said to call them ASAP if my mother was uncomfortable, etc., so it's nice to know they're looking out for her needs and are willing to listen to me. My husband is supportive and a few others have been really nice, but it's one of those situations where you realize who really cares.
I think dementia can be frightening if you've never been exposed to it, or to mental illness (sometimes they seem shockingly alike). If people understood that it's kind of a distorted reality and that the patient is experiencing things through a kind of warped glass or something, maybe that would help.

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My husband doesn’t qualify for Hospice because of dialysis, but he’s in a similar situation. Yes, it’s very lonely. I’ve made friends with the home aides that come and help me care for him. And, I’ve started visiting a counselor. This was a decision that I made to help me build my own support group because I don’t have close family or friends. I know I need someone to be there for me in the coming year.

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A counselor sounds like a good idea. I used to go ages ago, and it did help. It's strange that friends wouldn't at least want to show some support, you know? When you go through something major of watching a loved one suffer or die...
Why doesn't dialysis qualify him for hospice? Is it because it's considered treatment instead of just maintaining one's comfort in their final days?

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My Mom is 95 and resides in an assisted living due to advancing congestive heart failure although she's still functional the facility thought I should bring in hospice which I have. I feel your pain you are not alone I have a Friend of 25 years that has pretty much disappeared and when she does call pretty much talks about her life and sometimes asks how my is Mom's doing a lot of Friends that I would meet monthly for lunch never call I do have a Friend from childhood that I recently connected with her Mom is 94 so we're pretty much on the same page. I am an only child and thank God I have a wonderful Husband his Father is also in another assisted living close to Mom so we take care of both of them his Sister rarely offers to help all I can say is until someone goes thru this journey they will never get it my Mom and I have always been like best Friends sometimes I want to cry and feel very lonely I've been on this journey for 3 years I don't think you are the same person when it first began a lot of positive changes and some painful realizations I pray that God puts new people on my path in the future but for now its very hard and sometimes lonley

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It is disheartening to go through that, especially when people you thought close to you disappear. I think sometimes people think you need space to go through the process of losing a loved one, but come on …

I can spend a lot of time dwelling on my mother but I'm happy to talk about other things, so long as there's a dialogue and not just listening to one person talk about something they want to buy online or whatever. (Everyone knows those types …)

I too was really close to my mother for many years. She's had dementia, hearing troubles, etc., for a long time (and refused to wear a hearing aid) so it's been a long time of watching her decline, but when it takes a dramatic turn ...

Grief is strange, isn't it? It's so universal and yet so isolating in its ways.

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This country still has a stigma about death. We don't like to talk about it. But we need to. We all are going to die. Some sooner than later. And as my daughter says, some far past their exasperation date. Maybe its how I was raised. I have always excepted death for what I was taught, another journey. I cry, I miss them but they r in a better place.

Yes, caregiving is lonely. I was mad at my Moms Church. She was very involved. On Committees, running the kitchen. Church every Sunday and then some. Friends visits became less and less. I kept the Women's group informed when she went to the AL and then NH. No visitors not even the Minister. Then one of the Church ladies would tell me they saw Mom when they visited a man who was in the AL. They would say Hi to her then but never visit. Cards but not visit.

Actually, I can understand their thinking. She doesn't know me, she can't carry on a conversation, etc. But still its lonely.

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JoAnn,

Yep, so called Christians. Your mom’s church should have visited. Sad.

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I think you could take it as a compliment! An unwanted compliment, but one all the same. Maybe you appear to have everything under control and to be managing wonderfully well. I sometimes find it difficult to know what questions are appropriate to ask some of my friends who I know are dealing with ill relatives. When they mention some aspect of their week that involves the sick relative, I’m always relieved because I know what kind of comment to make myself.
Ihave such respect for them and you for what you’re all doing. I hope your friends find the opportunity to let you know how much they sympathise and want to support you, because I’m sure they do!

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Same happened with my Father in Law who is in an AL he dedicated years and donations to his church being Catholic he went attended mass everyday and ushered on Sunday's when he had a stroke he lived with us for 6 months not one person from that parish called including the Priest that he was very close to it didn't seem to bother him, he's a gentle soul but I couldn't believe it. Crazy

Regarding my earlier post this particular Friend that has distanced has been very needy and self absorbed I perhaps didn't realize it until I didn't have the time or energy to devote to the endless texts and phone calls which were always centered around her at one point my Mom was in the ICU and they didn't expect her to pull thru she did but when this particular Friend texted me I told her that I was emotionally and physically exhausted didn't have anything to give at that moment she became adamant and asked me if I wanted to end the Friendship, crazy perhaps this particular association has met its expiration date which isn't a bad thing. Thanks for listening

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Heidi,

It is lonely. I second what Barb has said. Maybe if the door is opened they will respond. Some people don’t know what to say so they avoid saying anything.

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Most people do not know what to say.
the ...
Call if there is anything you need. Is so pointless most of the time. Because no one ever expects you to ask or call.
Next time someone asks if there is anything they can do say...Yes!
Now for the list of things someone can do for you.
Can you stop by and have a cup of coffee with me I would love to sit and chat for a bit.
Would you mind, next time you are at the store could you pick up a gallon of milk and a dozen eggs for me?

Hospice has to have volunteers, Medicare requires it, you can ask for a volunteer to come and sit with your mom while you go out for a cup of coffee or grab some lunch with a friend. Or go get your hair done. Or the volunteer is there just as much for you as for your mom, just ask if they can sit and talk to you for a while.
Talk to the social Worker from Hospice, talk to the Chaplain they both know what you are going through.
find a support group in your area you need friends, other people that know what you are going through.

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Five and a half years into the dark journey and the full time caregiver. No relatives within 1500 miles. The bad part started about two years ago. Everyone, with exception of one, has dropped us and we are socially isolated with not even a phone call. We were very social and were always wanted by others to be at social events in the past. This is an insidious cruel illness that makes the end stage uncomfortable to those others. The only thing for you to do is “suck it up”. Life is cruel and the journey is long and dark. Remember the good times and as the saying goes,”just do it”. To put it in perspective, we have been married for 58 years and she has been the rock in my life. It will end and I will be more sad that we are no longer together.

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When you become a caretaker, YOU change and your relationship with your friends change. You have less time, your conversation centers around your caretaking, you have less time to socialize - it’s just the reality of your life and friends sometimes just back off to allow you to deal with your new job. If your parent lives with you it definitely limits your ability to socialize in your home and spontaneous get-together is near to impossible. It’s just a hiatus to accept and it doesn’t mean that you have been abandoned by your friends - they know your hands are full. Unfortunately it becomes incumbent upon YOU to reach out and let them know your desire to get together and your availability. Don’t give up - reach out.

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So very true! Everything changes.

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Sorry to bring this up so you can skip it of course.

i had a friend who had a stroke. She was a really nice lady. Daughter got a regular caregiver helper. Friends came once in awhile but not many. I went every few weeks ... forgot now how often.

Maybe friends think theyre intruding ??? I didnt care. We knew each other at the center. she had said once to me ... we could be friends. Then she had her stroke.

how could i give up on someone who had expressed a friendship wish ?

Anyway she had a funeral in a lovely room with about 10 or less people. She had been active at the local senior center and tax board.

Im sure people knew she had died but ...

it was like her daughter had a party for her and still nobody came.

I wouldnt expect a lot of response for anything.

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Heidi, I expect they are scared of saying the wrong thing, though of course you know that. Your hospice organisation might well be able to counsel you on the kind of approaches you might try if there are particular people you really want to get through to.

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When my 1st husband was diagnosed with an incurable cancer, I was frightened and asked friends, relatives for help. Those who had lost a loved one I asked if they'd be willing to share anything. A few said yes, and were SO helpful. Others just couldn't. Luckily, at the end,
I had company. I wish you well. You may have to let them know what you need.

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The silence you experience can be better than the hurtful things some people say. But remember—-You are not invisible to your real, true friends. It is hard to learn that there aren’t as many true friends as you had thought. But don’t let your frustration regarding the small number of supporters diminish their importance in your life. Don’t tell them “everyone has abandoned me” when they are standing beside you.

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ACaringDaughter,

There is truth in what you say. Better not to say anything rather than something hurtful or even stupid! I have a friend who constantly tells me that I am so lucky to still have my mom at 93. When I say I am tired or frustrated because it’s hard she tells me how she wishes she still had her mom around. This woman is 79 years old! Like she would enjoy taking care of someone when she needs assistance herself. That’s just crazy talk to me. Plus her dad died when she was five. That factors into it as well. I’m sorry she lost her dad young but it doesn’t lessen my burden and whenever she calls she NEVER asks about me, only my mom. If I tell her something annoying that mom does, she will say, your poor mom, never seeing that mom is a challenge for me at times. But she loves to talk about nutty stuff that her mom used to do. I don’t do that to her. I listen but I get sick of no reciprocation.

For some who haven’t cared for others personally, they simply aren’t able to understand. They haven’t walked a mile in our shoes, no clue whatsoever.

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Deuteronomy 31:6

" Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”

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Some positive posts here, sorry to not be one of them. I was told by what I thought was a very close friend that I was bringing HER down when we spoke. I did not go on and on, but it was my life, and what I had to share. I took pitty on her saying that if you can't even handle Hearing about it, obviously you're not built to do it. While some may say it doesn't mean she wasn't a true friend, she just couldn't handle it, I don't agree. I wasn't asking for much and got less. I simple sympathetic ear while I was going through so much. Mind you I only spoke to her maybe 1x per month or so, not everyday.
You will see who are your real friends, and those that aren't aren't worth your time

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Oddly the one person who annoys me the most is the one who never acknowledges anything I say. I don’t expect a lot, but when this person goes on about tv shows she’s watching, lawn furniture she’s bought, or expresses anger over her tax bill slowing her plans to buy a winter home, it makes my blood boil. I don’t expect to bend an ear but an “I’m sorry, that has to be tough” would be nice. You know, just to know that this person, who I’ve listened to about everything and anything, is listening to me for once.
maybe I’m just being angry over that, though, as an alternative to crying?

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When I was caring for my mom in my home on hospice I also had a spontaneous retinal detachment. Any friends I had disappeared. Then after my mom died they came around again, some asking for rides & money. I cut off from them despite 40 yr. "Friendships"...

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Katie,

Yeah, kind of like, where were they when you needed them.

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Yes it is lonely caretaking a loved one, and difficult managing friendships.

I have am having a different experience with a friend of 35 years who is dying of lung cancer. She is getting so difficult and does not want any of her friends to visit. She is getting so mean and has hospice caregivers 24/7.

It is losing a friend forever before she has passed.

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Some dying or terminally ill people actively push people close to them away. I read why, but can't remember now, just that it happens, and it hurts.

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End of life is hard, theres people out there who will judge and be condemning because you dont have mom living with you until the end.
It amazes me how everyone forms an opinion without actually being in the other persons shoes!
Maybe they are waiting for you to call them because they are uncomfortable and dont know what to say? Maybe they are afraid of saying the wrong thing? Call them and be like “Hey lets have a girls day!” See who calls you back.
Im a nursing assistant and its weird how end of life takes the silent turn among friends and family. No one knows what to say or do, not realizing that “Hey, maybe they just need a hug today?” “ Maybe they need a girls lunch to get their mind off of everything?” I think the fear and reality is just too much for people sometimes because their own mortality gets put in front of them?
Dont take it personally, end of life is a really hard subject for most people to swallow. Unless you see it like I do everyday, its like the Pink Elephant in the room that everyone tries to ignore.

Reach out and see who your real friends are. Join a support group and make new friends. You dont need anyone who cant be there for you when you need them!

HUGS!

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Good points.

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Heidi73 I think there are several reasons for that, and its not that your friends don't care. It's just that they don't know how to support you. They may say nothing because they fear they'll say the wrong thing. They may be afraid they'll upset you by bringing up the subject. Others may feel that it's a very private thing for you and they don't want to interfere. One of my friends asked if it's okay to ask how my mom is doing. It seemed an odd question at first, and then I realized how very considerate it was.
Death makes people uncomfortabe and confused. Maybe you can find a way to reach out to a close friend and talk about your feelings.

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Very true.... I remember feeling so helpless as my friend’s father was dying. He’d had a stroke, in hospital for a few days and wasn’t waking up. I even told her I didn’t know what to do, and she said she didn’t either. All we could do was just be sad.

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Just checking on you, Heidi

We care. We are here for you.

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My dad was Inpatient Hospice at the hospital he was being treated at- he entered Monday night and dead by Thursday......I never realized how overmedicated they make them....I feel like he might have been overdosed.....I cant shake that feeling...but yes, those 3 days were lonely but I was hoping for more time with my father BUT he became unarousable on Day 1....so it was so quick that I feel like I allowed them to kill him....AND a few close friends/family members didn't show up at wake or funeral or since then(its been 8 months since he died)…..I was there for them during hours of needs with death of their own parents etc....so im not surprised that some of your friends and family have also been distant......its tough!

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Oh hon. You didn’t kill him. He was already dying and yes there’s a lot of meds involved in hospice. Your father left peacefully... so many don’t get that chance.

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I get it's not the same...but I want to know. How are you? And how is your mother? And I mean it, just how are you dealing with all of this? Emotionally. And sometimes other people just don't know what to say so they chatter, etc. They don't get it or care for you so they don't want to upset you? Sometimes its not necessary to say anything. Just sit next to you. Be there. It doesn't always mean they don't care, just that sometimes they just don't know what to do.

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Some also use the situation to drop you as a friend or family member

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