1. < Loss & Grief
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Loss and Grief in Caregiving

Posted by Scott, Volunteer Mentor @IndianaScott, Oct 1, 2016

Good morning everyone. I hope today, a new weekend, and a new month, brings some goodness to each caregiver everywhere! I send you my best regards and wishes today and everyday.

I have been struggling lately with my grief and the loss of my wife. While I am keeping busy, visiting with family and friends, getting out, and trying to establish what my 'new normal' will be in life, I continue to struggle with not only our family's loss, but also one nagging thought. I am wondering if anyone else has confronted this issue.

It is this: Everything I read on grief and loss gave me two distinct impressions. One was that there were stages of grief and loss, like steps. Most even called them 'the stages of grief'. Second was that the end of life would be like some movie, book, etc. You know, friends gathered around, smiling, calm, peaceful, angels strumming harps, etc.

Well, in my case, and I admit I may be different than most, which is why I bring this up, neither of those two things were true.

First neither my wife, children, nor I proceeded through those stages of grief. My wife hit on one and stayed there for years. My children (grown) and grandchildren are not processing grief in those supposed steps either. And for me they were basically unrecognizable. Loss continues for the three of us to be overwhelming at times and the triggers are usually small events, but powerful in their ability to effect new equilibrium.

On the issue of loss, I am having a great deal of difficulty getting past the horror of my wife's last two months of life. Her physical pain was controlled, but that was all. My sleep pattern is still a wreck (I was on a 2-hour med regimen for her for her last three months), I am plagued with nightmares about her last months, and how she looked to me and would beg frequently for me to 'fix it' when I could not. I had always been the one to take on her battles and help as best I could until those last days, when it was beyond anyone's control.

It did not help that we were constantly barraged with (I am sure well-meaning) folks who would tell us over and over either it will end peacefully or that I would welcome her passing. No, it didn't end well and no I don't welcome her passing as I know she would have given anything for even one more minute with us.

Grief and loss seem to be more personalized and difficult than anyone actually writes about. Reality might bite, but it beats mythology for caregivers. At least I think so.

I would have preferred to be better prepared for reality than the wishful thinking and one-size-fits-all pontificating offered as what to expect.

Thanks for listening and I'm interested to know if this is just our experiences or perhaps a bit more common than not.

Peace and strength,

Interested in more discussions like this? Go to the Loss & Grief Support Group.

mj0123 | @mj0123 | Nov 1, 2016
In reply to @tavi "@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to..." + (show)
@tavi

@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to do. I simply want to let you know I read your post with tears and heartfelt wishes that you can find comfort. We each are going through so much on different paths, trying our very best to understand and be understood as we experience devastation. I hope someone close can provide support along with action that helps you. Thank you for writing ...as painful as the words are to put to paper, your writing helps us all understand and remember we are not alone. Please take care and watch here for more posts of support.

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Ive been hesitating to start, not sure if im ready. Im sorry for your loss, hopefully i get to the point to do counseling. May you also find peace and strength! One day at a time

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 1, 2016
In reply to @mj0123 "I had been looking at this sight and debating whether to post my feelings, here it..." + (show)
@mj0123

I had been looking at this sight and debating whether to post my feelings, here it goes. I lost my mother my everything 7 months ago. It has been the most devastating loss that has ever happened to me and my family. Everything just happened so fast, she was put on oxygen in January and was scheduled to see a lung specialist not til March. I knew something wasnt right , February 7th she wasnt feeling good with her oxygen levels dropping so we took her to the ER. They took xray,ct scans,blood work and just sent her home. Doctors weren't to conserned said she had some fibrosis to keep her on oxygen. As weeks passed by she gradually was getting worse, so February 25 we took her back to the same hospital decided to keep her for testing of course no answers til i requested a meeting with all the specialist that had seen her. Again because it was a weekend no answers til Monday morning. when we finally got to talk to them (again) told us she was being sent home and would have to come once a week for blood transfusions because her blood levels were low and she would also have to go for breathing treatments. When they said she was going home her eyes lit up and smiled. Of course we were excited our selves, a couple of days passed by and the floor Dr came in and said theres nothing else we can do, we both looked at each other and my mom asked me what did he mean. DR just walked out with no explanation. I followed him out and i asked him when do we take my mom home. Just looked at me and said your mother has two days to live. I just fell to the floor the Dr turned around like it was just another day. Didnt have no reaction, i know they probably see that dailey but i was alone with no family members around. Just devastating to call my dad and brothers. I didnt even get to ask why, what happened that everything has changed. We all finally got together with hospital councilor and she brought the lung Dr. In to explain that her lungs were hardening. I just cant have closure twice we were told she was fine and coming home. WE were never given options like possible lung transplants, which are very successful. im sure there is a waiting list for transplants but i would of offerd one of mine. She went in there not feeling 100 percent with oxygen on 4 or 5, i noticed once they pumped her with massive morphine and antibiotics she went down extremely and oxygen changed to a huge machine at 40% plus. So much morphine she couldn't even go to the bathroom or sit up. With such devastation we didnt do an autopsy and was cremated. Which is a big regret. I wanted to get her records from the first time we took her and compare but hospital wont release her records. Think we have to go through some process. Anyway this whole nighmare has been devastating and i dont know what to do. Do i try and dig or just leave it alone. I cry dailey and is affecting my life just thinking of all the what ifs and why twice they told us things were fine. I remember her telling me i felt ok til i got here, she did have slight pneumonia back in October 2015 and since then she kinda wasn't her self. MY life has changed forever

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@mj0123, I am very sorry to hear about the loss of your dear mother. Having lost my mom several years back, I can understand some of your pain. I hear your frustration, too. I replied to let you to know that my heart hurts with you, and my prayer will include you. On Thursday, we will bury my own dear mother-in-law. May they both rest in peace, and be blessed with eternal life. Amen.
Rosemary

REPLY
mj0123 | @mj0123 | Nov 1, 2016
In reply to @mj0123 "I had been looking at this sight and debating whether to post my feelings, here it..." + (show)
@mj0123

I had been looking at this sight and debating whether to post my feelings, here it goes. I lost my mother my everything 7 months ago. It has been the most devastating loss that has ever happened to me and my family. Everything just happened so fast, she was put on oxygen in January and was scheduled to see a lung specialist not til March. I knew something wasnt right , February 7th she wasnt feeling good with her oxygen levels dropping so we took her to the ER. They took xray,ct scans,blood work and just sent her home. Doctors weren't to conserned said she had some fibrosis to keep her on oxygen. As weeks passed by she gradually was getting worse, so February 25 we took her back to the same hospital decided to keep her for testing of course no answers til i requested a meeting with all the specialist that had seen her. Again because it was a weekend no answers til Monday morning. when we finally got to talk to them (again) told us she was being sent home and would have to come once a week for blood transfusions because her blood levels were low and she would also have to go for breathing treatments. When they said she was going home her eyes lit up and smiled. Of course we were excited our selves, a couple of days passed by and the floor Dr came in and said theres nothing else we can do, we both looked at each other and my mom asked me what did he mean. DR just walked out with no explanation. I followed him out and i asked him when do we take my mom home. Just looked at me and said your mother has two days to live. I just fell to the floor the Dr turned around like it was just another day. Didnt have no reaction, i know they probably see that dailey but i was alone with no family members around. Just devastating to call my dad and brothers. I didnt even get to ask why, what happened that everything has changed. We all finally got together with hospital councilor and she brought the lung Dr. In to explain that her lungs were hardening. I just cant have closure twice we were told she was fine and coming home. WE were never given options like possible lung transplants, which are very successful. im sure there is a waiting list for transplants but i would of offerd one of mine. She went in there not feeling 100 percent with oxygen on 4 or 5, i noticed once they pumped her with massive morphine and antibiotics she went down extremely and oxygen changed to a huge machine at 40% plus. So much morphine she couldn't even go to the bathroom or sit up. With such devastation we didnt do an autopsy and was cremated. Which is a big regret. I wanted to get her records from the first time we took her and compare but hospital wont release her records. Think we have to go through some process. Anyway this whole nighmare has been devastating and i dont know what to do. Do i try and dig or just leave it alone. I cry dailey and is affecting my life just thinking of all the what ifs and why twice they told us things were fine. I remember her telling me i felt ok til i got here, she did have slight pneumonia back in October 2015 and since then she kinda wasn't her self. MY life has changed forever

Jump to this post

Thank you Rosemary, i'm sorry for your loss. MY mother was my best friend, my everything, i just feel so alone without her. I have a wonderful supportive husband and family but i feel like im cheating them by not being myself. Crying on a dailey basis, ive pulled away from them a little. I try so hard but i have a part of my heart missing. Thank you for your response may you find peace with your loss and May God Bless your family

REPLY
Debby - @tavi | @tavi | Nov 1, 2016
In reply to @tavi "@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to..." + (show)
@tavi

@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to do. I simply want to let you know I read your post with tears and heartfelt wishes that you can find comfort. We each are going through so much on different paths, trying our very best to understand and be understood as we experience devastation. I hope someone close can provide support along with action that helps you. Thank you for writing ...as painful as the words are to put to paper, your writing helps us all understand and remember we are not alone. Please take care and watch here for more posts of support.

Jump to this post

I've been seeing a therapist off and on for over a year -- it is good because the time is dedicated to me and the issues I'm facing. I do not have to be concerned about care and feelings of others for a brief while and can simply talk through what is going on, cry if I want and discuss ideas that I"m considering without judgement. She does not try to solve anything, just listens and offer suggestions. I've been to therapists previously and found that I know when it is good to start and when it is time to stop. Trust your judgement and be sure to find someone who understands what you have been through. I too am not a group therapy person... that may be why this forum is so nice. We share but it is not forced sharing -- posts are presented on each person's individual timeline. Take care.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 1, 2016

@mj0123, are you the only daughter? I see where you mention dad and brothers, but did not see mention of sisters. I ask because I was the only girl; I have 4 brothers. My mom was my best friend, too. Rosemary

REPLY
2 replies
mj0123 | @mj0123 | Nov 1, 2016
In reply to @rosemarya "@mj0123, are you the only daughter? I see where you mention dad and brothers, but did..." + (show)
@rosemarya

@mj0123, are you the only daughter? I see where you mention dad and brothers, but did not see mention of sisters. I ask because I was the only girl; I have 4 brothers. My mom was my best friend, too. Rosemary

Jump to this post

Yes i'm the only daughter, my parents took in 4 other children after my grandparents died. There were two girls and two boys, im really close to one of them but she lives two hours away. I moved away from our hometown after i graduated and ended back here in our home town after 10 yrs. We live next door so id visit several times a day. My father built me a salon/spa next door so i used to pamper her with hair,nails,pedicures. of course she had me very spoiled and full of love for her kids. I miss all the little things . She used to help me with my hair, which i loved.

REPLY
mj0123 | @mj0123 | Nov 1, 2016
In reply to @tavi "@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to..." + (show)
@tavi

@mj0123. Oh my dear mj0123. I cannot pretend to be wise enough to suggest what to do. I simply want to let you know I read your post with tears and heartfelt wishes that you can find comfort. We each are going through so much on different paths, trying our very best to understand and be understood as we experience devastation. I hope someone close can provide support along with action that helps you. Thank you for writing ...as painful as the words are to put to paper, your writing helps us all understand and remember we are not alone. Please take care and watch here for more posts of support.

Jump to this post

I live in a very small beautiful community so we are limited to therapists. There are a few about an hour away. Hopefully i can find someone, we also have some preacher's that help with counseling. Thank you for the info and for your support. My husband was happy to know that i finally signed on to this 🙂 Have a great evening

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 2, 2016
In reply to @rosemarya "@mj0123, are you the only daughter? I see where you mention dad and brothers, but did..." + (show)
@rosemarya

@mj0123, are you the only daughter? I see where you mention dad and brothers, but did not see mention of sisters. I ask because I was the only girl; I have 4 brothers. My mom was my best friend, too. Rosemary

Jump to this post

@mj0123, You have some beautiful memories to treasure forever. Thank you for sharing. I, too, miss the 'girl' times with mom. After she died, I found some comfort in talking with, crying with, and sharing memories with my sister-in-law over the phone. We were long distance, but she also had become like a daughter to mom and a sister to me after she married my older brother. We remain very close today. Is there someone who was close to your mom; someone who knew her and loved her, that you could talk with and cry with as you face each new day? Is there someone who you can do some 'girl' things with. Like hair or nails? Consider treating yourself to a girls day out. Pamper yourself and do it in honor of your mom. Keep in your mind and heart how happy your mom would be for you.
These are some of the sort of things that helped me-and still do.
I'm happy that you have joined this discussion. You have refreshed in me some of the special memories of times that mom and I shared. Thank-you.
Rosemary

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nikieva | @nikieva | Oct 27 6:12pm

This.......I am caregiving for my father. I have never really faced or dealt with death until this past year and my father is set to be the 6th death of people I care about this year.

My looking and understanding of death is that it's unpredictable, messy, chaotic, and never actually goes away. That you will never return to who you were because in a way that part dies with them, because there is no longer a future to have.

You learn to adjust. You get comfortable with the hurt and pain. You live with discomforting sadness.....eventually.

Sorry this sounds so hopeless and down but it's just my view.

There is a beauty though and that you cannot feel grief without having known real love.

I hope your family can learn a new way of life without your wife while also remembering to feed the present love that is still surrounding you all.

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