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Harder than care giving is the loss of the LO
Moish
Posted: Friday, September 23, 2016 4:06 PM
Joined: 7/29/2016
Posts: 319


Before my mother died I was on the caretaker's forum every day. Seeking help, answers, sharing, trying to help others. I was often in pain, I was exhausted, often very angry, frustrated. There were times when I just wanted it to be over, for her to take her final breath. And I was there on those boards every day and received help and advice and support and commiseration and understanding.

And now she's gone, she took that final breath, and I feel absolutely bereft. 

It feels very lonely here on this board. It feels left out. 


Still Waters
Posted: Friday, September 23, 2016 5:29 PM
Joined: 2/6/2012
Posts: 1092


I feel the same way. I feel like this is some cruel joke. You pray for the day for their suffering to be over and also so that you can have a life again. Then it's over and you feel like you want to die. And there's very little support here on the side. Not only on the message boards but in life too. Other than my bereavement counselor and  therapist I can't find anybody who wants to talk about my mom with me. I think everyone was just so sick of hearing me complain for the past 8 years. They expect me to be happy now and have a life. Maybe we can talk to each other? If you message me I'll message you back all the time.
Still Waters
Posted: Friday, September 23, 2016 5:34 PM
Joined: 2/6/2012
Posts: 1092


You know something that I did to in the beginning. If you go to the top of the posting part of the message board and you click on views you can read some of the top posts from the past years. There have been a lot of people who were suffering here for a long time. What's nice about that to you can pick and choose the ones that are most similar to your situation. And read all the wonderful replies. It seems as though we're definitely not alone just not a lot of activity here. Probably more people suffering then dying.They've moved on now obviously but we can benefit from the old posts. Take the time to do that you'll be surprised how great some of them are.
Still Waters
Posted: Friday, September 23, 2016 5:35 PM
Joined: 2/6/2012
Posts: 1092


P.s it looks as though you'd have to do it from a desktop though not from a cell phone.
jfkoc
Posted: Friday, September 23, 2016 5:53 PM
Joined: 12/4/2011
Posts: 19390


Moish....you are welcome on any of the boards. Many who have lost a loved one that they cared for never post here instead choosing to stay on another forum. 

One thing I wanted to share with you was that I realized that I had not only lost my husband, I had lost my job. Strange but true.

 


Moish
Posted: Friday, September 23, 2016 7:08 PM
Joined: 7/29/2016
Posts: 319


Still Waters, I'm so sorry you have no one to talk to about your mother. You really did put your life on hold for a long time. I wish I could say more to help you. 

I have a ton of people who want to talk to me about Mum -- just that I'm not ready to hear some of their voices (most in Israel). My children are near me, and they listen to me. But right now I want to be physically alone. I want to hole up in my place, just me and my dog. 

Nobody in their right mind would expect you to "get on with your life" at this stage. That will come, this is hardly the time. Hell, I can't even do the dishes ... and I need a shower and can't get the energy up to do even that. You'll get on with your life when you're ready, don't let anyone pressure you. And so many really don't know what to say when they're with someone who's just lost a LO. They mutter platitudes because they just don't know what to say. You had eight years of taking care of your mother, that's a long, long time. I'm not sure how you did it, I applaud you. And I'm glad you have a therapist. 

You will get there, and I will get there. But neither of us are anywhere NEAR ready for that yet. 

 


surfergirl
Posted: Friday, September 23, 2016 7:36 PM
Joined: 1/23/2012
Posts: 781


Hi Moish,
lost my mom when I was just 23 and newly pregnant with my 3rd baby. lost dad about 8 years later, had 4 kids by then . Was kept so busy did not have too much time to think. But last 4th of July lost hubby after care giving for many years. It is all difficult and I feel for you. But trust me it will get better with time. It is meant to be that way. Trust me you have people that think about you , and feel your pain.

 

Hugs Surfergirl
surfergirl
Posted: Friday, September 23, 2016 7:37 PM
Joined: 1/23/2012
Posts: 781


PS. LOVE YOUR DOG!
Moish
Posted: Saturday, September 24, 2016 12:06 AM
Joined: 7/29/2016
Posts: 319


Surfer: that's awful that you lost your Mom so young. Truly sad. My mother was there to help with my two babies, thank goodness. How young you were to go through that. 

My silly wonderful dog, Mollie, chewed a huge hot spot on her side the day my mother died. Mollie is 10, she's never done that before. But there she was, determinedly chewing herself silly. So to the vet we went and now she's on meds and a collar which she hates (big bill for all that). She's a love of a dog. Clearly she knew my mother was leaving us.


acb10
Posted: Saturday, September 24, 2016 6:14 AM
Joined: 5/31/2014
Posts: 124


yes, I agree with you.  In fact a couple of months ago I posted that I wished more people came here.  I think there are several reasons.  The first reason is that this board is so far down the list, almost as if the organizers think it isn't as important, so that people don't even know about coming here.  Second reason is probably more complicated.  Perhaps for some caregivers, they don't want to be thinking about the illness of their LO that brought them here, or they are shutting out the past, trying to go toward the future, or have their own way of grieving and don't want to think about the pain of the past.

I'm going to monthly bereavement meetings.  But I think this board, is much more important to me to talk about my grief.  I still read the caregiver's forum, give my opinion where I think I might be able to contribute after all my long years of taking care of my mother; at the same time, I need to be cared for, we all do, and perhaps by being here on this forum, which doesn't require a lot of time or effort, we don't have to drive anywhere to seek counseling, we can just sit in front of our computers when we want and be open with our grief, open with our thoughts.  We were all in this together when we were taking care of our LO's; we need to be together now, even for just a little while, to help in the healing process.

april


Moish
Posted: Saturday, September 24, 2016 1:23 PM
Joined: 7/29/2016
Posts: 319


Abc: maybe not too many caregivers come here because they know that one day they too will be on this board. When I was posting on that board I didn't even know this board existed. 

 I read some of the posts on the caregiver boards and I relive all the agonies I went through with my mother, and it's painful to read. I took care of my mother fully knowing this would be the conclusion, that she would die. As soon as I called hospice I knew this was it, it was coming soon. I knew, and yet when it actually happened it was a total blow. Yet it was her time to depart, she'd suffered too much, she was in too much pain. So when I read some of the posts by people whose LOs are still alive, it breaks my heart knowing that as hard as it for many of them, there is still pain ahead for them. 

And maybe coming here to this board would only serve to remind them that this is the ultimate board. 


surfergirl
Posted: Sunday, September 25, 2016 6:43 PM
Joined: 1/23/2012
Posts: 781


Dear Moish,
Sure hope your dog is getting better, yes animals are so feeling and insight full. The pain of loss does get easier to bare in time, I believe that is how it is meant to be.

 

Sending hugs your way Surfergirl
bela
Posted: Sunday, September 25, 2016 6:57 PM
Joined: 12/15/2011
Posts: 4120


Oh yeah.  You reminded me.  The showering.  Sometimes I wake up and say nope...add some stuff to my hair, run a comb through it, put on the clean clothes and screw the shower.  And you know what, I don't care.  And with some recent record heatwaves I rationalize that I'm going to get all yucky with hours anyway. Ah.  I also use the wipes because they work!

And most definately have a hard time with doing the dishes.  I have plenty of toilet paper but so many times its just mind boggling to put the roll on the thing! Same with paper towels.  I don't do tasks well.

Thanks for admitting the shower and dishes story so I could join in!!!

Bela


Still Waters
Posted: Monday, September 26, 2016 12:07 PM
Joined: 2/6/2012
Posts: 1092


Your subject line says it all. Who would have figured? Care giving is SO hard. I wish someone would have warned me..... Evey one just let me let her go.....

Moish
Posted: Monday, September 26, 2016 12:13 PM
Joined: 7/29/2016
Posts: 319


Still Waters wrote:
Your subject line says it all. Who would have figured? Care giving is SO hard. I wish someone would have warned me..... Evey one just let me let her go.....
Please, please call hospice and get their grief counselling. Please do that. They are there for that. 

Still Waters
Posted: Monday, September 26, 2016 1:12 PM
Joined: 2/6/2012
Posts: 1092


Moish, I am in counsling! I really hate it when I express my feelings and everyone thinks I am going to jump off the cliff. For real. You posted your feelings and I am posting mine. Jeeze.

jfkoc
Posted: Monday, September 26, 2016 2:10 PM
Joined: 12/4/2011
Posts: 19390


"I wish someone would have warned me..... Evey one just let me let her go....."
How can we help you with this?

Still Waters
Posted: Monday, September 26, 2016 2:15 PM
Joined: 2/6/2012
Posts: 1092


Jfkoc, thanks for the helpful reply. I am wondering why Hospice would have let me, let her go. They could see how much I loved her, they were in and out of my house all the time and saw how hard I worked and all the good care she received. Couldn't anyone see that I was just tired? I think that someone should have told me, to keep going no matter what because when they are gone, it is worse. Don't you agree? If someone told me that, I would have listened.


Moish
Posted: Monday, September 26, 2016 2:42 PM
Joined: 7/29/2016
Posts: 319


Still Waters wrote:
Moish, I am in counsling! I really hate it when I express my feelings and everyone thinks I am going to jump off the cliff. For real. You posted your feelings and I am posting mine. Jeeze.
You're right. I apologize. And I'm glad you brought me up on that. 

Still Waters
Posted: Monday, September 26, 2016 2:46 PM
Joined: 2/6/2012
Posts: 1092


I feel duped. I feel stupid. I feel like I fell right into Hospic's trap. I should have known better. I did know better. I was just tired. They should have seen my mother was not dying. They know better. She just refused food and liquids --- sometimes.

Moish
Posted: Monday, September 26, 2016 3:11 PM
Joined: 7/29/2016
Posts: 319


Still Waters, I can't speak for you (as you so well reminded me), but I can tell you how I feel about my mother's death last week: I feel anguish, and I didn't expect it. I knew I'd feel sad, but I didn't know I'd feel such anguish. 

I am sure we could have kept Mum alive a bit longer, but she was in agony. It was terrible to see the pain she was in, and then the confusion and wasting away. I used to storm about it, how cruel it was, how we could put our dogs down with such gentleness and compassion, but not those people we love. I raged about it, especially when I was exhausted. I wanted her out of pain, out of fear. Hospice listened to me storming about this many times ... all they could do was offer relief in the form of medications. But they knew what they were doing, and they really did manage to alleviate the pain and they helped with her confusion and fear. One day my daughter said, "she'll die with all these drugs ..." and I said, yes, she would, or she would die in pain without them. I far preferred to let her death come sooner without pain, rather than later with pain. And I'd do it again. I'm sad, but I have no regrets. It was her time. One day it will be mine. 

Does any of that help you? I wish I could hug you. You were so noble in how you took care of your mother, I am in tremendous admiration of your dedication. 


Still Waters
Posted: Monday, September 26, 2016 3:21 PM
Joined: 2/6/2012
Posts: 1092


Moish. If my mom was in pain I could justify it. But my mother was not in any pain  

In fact I caused her pain from dying from dehydration. But thank you for trying to help, again.

I have read many stories on these message boards about how Hospice took them too soon and for the wrong reasons. I really did know better. I was smarter than that. I went with the flow. I feel into their trap.

Sometimes I think though... really what was the point in keeping her alive. Except for the unconditonal love we gave to each other, a good nights sleep. The rest of the day she was just existing. But maybe that should be good enough.

I guess I have to somehow sort it all out in my mind. Which is what I do all day. Beat myself up. Drive my self crazy. Come here for answers....



jfkoc
Posted: Monday, September 26, 2016 5:19 PM
Joined: 12/4/2011
Posts: 19390


Still...this is what happens when a person is actively dying. Ihope it helps.

Natural dehydration is comfortable and causes the release of endorphins that promote comfort. - See more at: http://www.curetoday.com/publications/cure/2012/summer2012/myths-about-the-dying-process#sthash.shTYvVyb.dpuf

 


Still Waters
Posted: Tuesday, September 27, 2016 10:33 AM
Joined: 2/6/2012
Posts: 1092


Thank you. I checked it out. I have pictures of my mom while she was dying on my cell phone. I keep looking at them and feel terrible. She has a frown on her face and her brow is wrinkled, like she is in pain. Why can't I stop feeling like I caused her death?

cowboys
Posted: Friday, December 30, 2016 10:14 PM
Joined: 12/10/2011
Posts: 338


Still waters, I am sorry for the loss of your dear mother. I was here on the boards for four years and I remember you. It is so unbearable. I couldn't dream of ever coming back here. My beloved father left us in 2012. I am still missing him everyday. I had a great experience with Hospice. I want to make one point out of love, you said your mother wasn't in pain. That may be true but you also could not really know. I didn't want one bit of suffering or pain and my father looked me in the eyes and said my whole body hurts. I didn't see where. You were a loving, caring daughter. That's all that really matters. Your mother knew you were with her, just like my dad knew. I wish you peace that only comes with time.
His Daughter
Posted: Saturday, December 31, 2016 6:17 PM
Joined: 6/25/2014
Posts: 2270


Still Water,

   There was something you said in your response:   I am wondering why Hospice would have let me, let her go. They could see how much I loved her, they were in and out of my house all the time and saw how hard I worked and all the good care she received. Couldn't anyone see that I was just tired? I think that someone should have told me, to keep going no matter what because when they are gone, it is worse.

When I read this, what immediately hit me was that you were very tired, and you were in somewhat of a panic/hectic state.  BUT, hospice was suggesting that you just let her go.

Still Water, possibly hospice wasn't doing this for you.  They were doing this for your mom.  As they were evaluating your mom's condition, they were clearly seeing the writing on the wall.  Typically, we see what we want to see.  You saw a mom that was ok, not in pain, doing alright.  The hospice team my have been looking for other signs.  Possibly that's why they suggested that you stop food and drink.  Honestly, if you could, it might be worth talking with the hospice team and asking why they made that recommendation, at that time.    It might help answer your question and set this "I was just tired" thing aside.  I really don't believe that a hospice team would ever suggest something like that, just because the caregiver was tired.  I think they would attempt to get you some more help, or call in more people to support you.   You have to at least consider that their recommendation was solely based on her condition, and not your exhaustion.  
 
So here's a question.   If your mom had lived until December 31, 2016,  then took a quick final breath, do you think this grief would be easier on you right now?  Would you miss her as much as you do right now?    Would you still question if it was something you did wrong? Or do you think you'd have better accepted her death?  

While we all know that guilt is a part of the grief process, I wondering if the larger picture is that you are just struggling with missing her horribly.  I know how that feels.

I guess I knew from the very beginning that my dad was dying from AD.  And in a very different way than with my mom with cancer.  At least she had a treatment plan and an optimistic doctor.  At least some glimmer of hope.  But this thing?  No treatment plan, no hope, no way out but death.   I thought about it a lot while he was ill.  I knew I was losing him day by day and inch by inch. And while it's really not possible to understand all the feelings you'll have when you lose someone, I guess I was as prepared as I could be. (It still hit me like a punch in the gut.)  So just curious, for all these years while your mom was sick, did you even say to yourself, "This is fatal. She is going to die." ?  Or is it just that you are caught off guard with the intense sadness and pain, and didn't think it would be this bad?

EDIT HERE ADDED LATER:  From another of your responses, I truly believe that you think hospice knew your mom wasn't dying.  Got it.  


Still Waters
Posted: Sunday, January 1, 2017 10:33 AM
Joined: 2/6/2012
Posts: 1092


Thank you Cowboys. I remember you too and I remember when your father passed away. I try to hard to think of all the good things I did for, I hope she knows how much I did for her, I hope she is not mad at me for letting her die, I hope she understands what happened in the end. I will never know. 

His Daughter, it is a question I have been asking myself since she died. If she would have died peacefully at home in her sleep, would I still be this hard on myself? I do not think I would be. I think I would have been okay. I would have missed her terribly but if there was nothing I could do, then I would have been at peace in my heart. As it was, my mother was not sick, she was strong, she would have lived at least another year. She just was not that hungry anymore. I let her die. I do not deserve to be happy. Some times I feel like I do not deserve to live and should be punished for what I did. But no one would punish me for being selfish. So maybe I should blame the people around me who did not help me or give me good advice.

I spoke to the people at Hospice who were involved in the decision to send her to the Hopsice Facility. They both told me my mother clearly refused food and liquid (they were not there all day long so they did not see that she ate a little bit of food sometime) and that the only mistake I made was not letting her die a long time ago. They would never admit that they did not give me good advice. So that was not helpful.


His Daughter
Posted: Sunday, January 1, 2017 3:28 PM
Joined: 6/25/2014
Posts: 2270


Still Water, I find it interesting that hospice made the comment:   that the only mistake I made was not letting her die a long time ago.

Do you think that your mom 1) went downhill when she went to the hospice hospital or 2) they really just weren't paying much attention to her and therefore didn't really understand her condition or 3) simply said this so that they could absolve themselves of any responsibility for their recommendation.   

My guess is you feel it is #3.  

And here's another question.  Would it made a difference if you hadn't moved her to the hospice facility? i.e she had died at home?   You seemed to think if she'd gone peacefully in her sleep you might have felt better about it.  (I often wished that for my dad also.  But we weren't so lucky.)