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,

@hopeful33250

@IndianaScott, @macbeth @tavi I would just like to add my message to you all along with Colleen’s. This is a good time to acknowledge your missing loved one. For those of you more experienced in loss, please share with us what you have done in the past regarding acknowledging your deceased loved one during the holidays. Does anyone have a special tradition that they would like to share? Thinking of all of you and wishing you the best!

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@macbeth Thanks so much for sharing the way you honor the memory of those who have passed away. It sounds as if you have included them in the activities of your every day life .

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@hopeful33250

@IndianaScott, @macbeth @tavi I would just like to add my message to you all along with Colleen’s. This is a good time to acknowledge your missing loved one. For those of you more experienced in loss, please share with us what you have done in the past regarding acknowledging your deceased loved one during the holidays. Does anyone have a special tradition that they would like to share? Thinking of all of you and wishing you the best!

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Thanks, @tavi, you also have shared some very tangible ways of remembering and adjusting to a new normal now that loved ones are no longer with you.

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@macbeth @tavi I totally understand avoiding this site, especially during tough times when one would think that connecting with others could help. But posting a message often requires making sense of jumbled thoughts and trying to put that into words when there’s caregiving to be done or sleep is a bigger priority. I get that.

That makes the words you shared all the more precious. Thank you for that gift. I think your memories have painted mental pictures for anyone reading your words. I delight in the image of you and your sister MacBeth, and the carefree days of the past that support our present. Tavi, so nice that MacBeth’s message pulled you in.

Words of course are our only tool here. We can’t drop off a pot of soup like a neighbor could. When I or another member checks in, please don’t see it as a burden to post but just our bringing you a cup of tea and sharing the load for a minute.

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@colleenyoung
I really like that – a cup of tea and a visit!

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I have no words of wisdom because I am still going through losing my sister to dementia. She now lives with my husband and I in a house we all 3 bought together for retirement. As soon as we got settled we started seeing that she was losing her memory. It’s been 3 years. From what you say I guess I should figure out a way to enjoy each day with her and get as much rest as I can, Anything else you would suggest?

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@sallysue
I am very sorry to hear about your sister. It’s ironic hat this illness so often hits people just when they could kick back and enjoy life – both the victim, and the caretaker. It is a long and difficult good-bye. I am currently involved in this with my husband. For me, the most daunting part is that it can go on for such a long time. But, yes, I try to enjoy as much as possible for as long as possible. Know that many of us are in this with you, in a way.

Strength to you, and to all of us.

Macbeth

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@sallysueboth
Let me add my wishes for strength and comfort as you move through this journey with your sister. For me it has been painful and bittersweet — just when I think the pain of loss will overcome me I am able to share a moment of joy and laughter with my husband — these times are treasures beyond measure and keep me moving forward in loving care for him. Remember to also take care of yourself — I have personally been challenged in recognizing this need to stay rested and healthy — for both of us.

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@tavi Thanks for sharing your thoughts with others. If you feel comfortable doing so, please share with our group some ways that you have taken care of yourself, especially in the area of staying rested and health. Thanks again!

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@hopeful33250

@tavi Thanks for sharing your thoughts with others. If you feel comfortable doing so, please share with our group some ways that you have taken care of yourself, especially in the area of staying rested and health. Thanks again!

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My sister sleeps in later than I do. So I get up early (I’m a morning person) and do my workout, shower, use the hot tub, fix my breakfast and then take it in my room to eat. It is my time. Then when I refill my coffee or take my dishes out to the kitchen etc I just naturally check on her without having to ask her or prompt her. We are together the rest of the day and evening except for a short rest time after lunch. It works for me. Also we can still leave her home alone for short periods without hurting her feelings and so my husband and I frequently go out for Sat. breakfast .

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@hopeful33250

@tavi Thanks for sharing your thoughts with others. If you feel comfortable doing so, please share with our group some ways that you have taken care of yourself, especially in the area of staying rested and health. Thanks again!

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@sallysue Thanks for sharing a little of your story. It sounds as if you have developed a plan that gives you some time for yourself. I’m sure that others can learn from your experience.

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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. 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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@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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Thank you for your response, i didnt know where to turn anymore. My husband wants me to seek counseling. Glad to know that people who have gone through this can (understand) what im feeling and i theirs. Its been 7 months and it feels like yesterday, i pray for my mom in heaven and for us to get through this loss. Thank you for the support and you also take care of yourself

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@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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Hello @mj0123 It is nice to e-meet you here. I am sorry for your loss and the pain you must be experiencing. I am glad you posted here on Connect. I am Scott. I was my wife’s caregiver fro 14+ years during her battle with brain cancer. She just passed away in July and I understand your sense of loss and the void, which much be in your life. Connect is a good place to share your thoughts and feelings. I have found it a ‘safe’ place to do that. I have found folks do not judge, they just welcome your sharing since we all know sharing is a big part of the process we must face as we struggle in the life that is now unfolding before us.

As to your Mom’s medical records I ask if you or another family member had power of attorney for her medical needs? If so getting a copy of her records, etc. should not be too hard. It may be time consuming and you may have to request them from multiple places — each doctor, the hospital, etc., but you should be able to get them. As to advising whether it is a good thing to do I think that will have to be up to you. Tough decision I am sure for you. The records may help you understand what went on, but in that they won’t really change the outcome, it could be difficult and challenging things to read. Gauge your own strength.

If you are at all like me, the loss and grief journey you have embarked upon will be just as challenging as the medical journey you just experienced with your mom. I am so sorry for your loss.

I find writing about my feelings does help. If you are lucky enough to have a friend or family member who listens well, I suggest, based on my experience, it can help.

Try to stay active. I hope you stick around Connect and please feel free to ask any questions, etc.

I send you peace and strength!

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@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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@mj0123 I can feel your sense of loss in your words. I tell people ‘it has been three months. It feels like three seconds…it feels like 300 years.’

Counseling can be helpful if you are ready for it. I have done some one-on-one counseling, but (and this is just me) I found after the first session I was not ready yet for group counseling.

Peace and strength!

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