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Heidi73 Asked February 2019

Hospice, it's lonely...

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!

BarbBrooklyn Feb 2019
((((((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!
Heidi73 Feb 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?"
anonymous272157 Feb 2019
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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wannek Feb 2019
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
Heidi73 Apr 2019
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?
Sunnygirl1 Feb 2019
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.
Heidi73 Feb 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.
JuliaRose Feb 2019
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.
Heidi73 Feb 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?
Darby9859 Feb 2019
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.

Dolciani Feb 2019
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.
NeedHelpWithMom Feb 2019
So very true! Everything changes.
ACaringDaughter Feb 2019
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.
NeedHelpWithMom Mar 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.
Llamalover47 Feb 2019
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.”

Betsysue2002 Feb 2019
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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