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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!

((((((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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Heidi73 Feb 25, 2019
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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Heidi73 Feb 25, 2019
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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Heidi73 Feb 25, 2019
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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Heidi73 Feb 25, 2019
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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NeedHelpWithMom Mar 5, 2019
JoAnn,

Yep, so called Christians. Your mom’s church should have visited. Sad.
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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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NeedHelpWithMom Mar 5, 2019
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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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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NeedHelpWithMom Feb 27, 2019
So very true! Everything changes.
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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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