Share this:

Loss and Grief in Caregiving

Posted by @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,

REPLY

@IndianaScott I believe that my previous words to you are worth repeating, Scott, you have a remarkable ability to be open and vulnerable and to lay your feelings out for all to see and experience with you. This is such a gift!! That said, I won’t try to advise you, just to let you know that I feel assured that you will make it through this grief experience and eventually move on. Some people describe grief recovery in terms of hills and valleys, that come and go in waves. I prefer to think of recovery in terms of railroad tracks. The grief “track” is always there, but running side by side is the “track” that is becoming your new normal. If my theory is right (and you are certainly free to test it against your own feelings and thoughts), your loss of your wife will always be a part of you, however, on the “other side of the track” you will develop new habits, friends and a new life, that will bring you rewards. I pray that will be the case for you. Teresa

@IndianaScott
I will begin with an experience very different from yours, but, nonetheless, the source of very deep grief in my life.

Many, many years ago, before I met my husband, I loved someone. He died in a car accident one night when I was not with him. This may not sound like a major tragedy to many people, but I loved him fiercely, and it nearly killed me. Really, it nearly killed me. At that time, I was working for a government agency where there were many social workers, and one was a friend of mine, who encouraged me to begin to attend group counseling meetings for people in grief. I didn’t want to go, and, actually, am not advocating that sort of thing. But I did go to one set of sessions, and learned this: Grief is very personal and individual. Everyone grieves differently and for different amounts of time. Each person who is grieving has to do whatever THEY have to do to get through it.

At that time, I was lucky to still have my mother and my sister, both of whom have since passed, and a couple of dear friends, all of whom were right there with emotional support. For me, it helped to talk. They must have earned their wings during those days, weeks, months, and years, and during that time I just eked by, going through the motions of life. Then, one day, someone said something that, somehow, made me laugh – just a little. At that point, the sound of my little laugh was so foreign that it sounded odd, even to me, and I cried some more. But then, in time, it happened again, and, eventually, again, and so forth.

But, my big point is what I learned at those dreadful grief counseling sessions: Grief is personal. Grief is different for everyone. A person has to do what THEY have to do to get through it. Learning to live without a loved one in your life, and/or with the circumstances of their last days and passing, is a process. It takes time.

I still miss my father, who passed 41 years ago, after suffering Alzheimer’s for over a decade. I still feel the loss and pain of watching him go from being a proud, well-mannered, dignified, leader, to the shell of a person that he became.

I still feel the horror of having to relegate my mother to the care of a nursing home for the last year and a half of her life due to paralysis after a stroke – with experiences that are far too long and troublesome, and too disturbing to go into here and now.

And now, my husband, the love of my life, has dementia, and it is, again, very difficult to watch this happen to him. But I just keep going. Things keep changing. Sometimes good and happy times get stirred into the mix.

My thoughts are with you. Just keep going. Things will change.

Thank you for this site, and for all of the opportunity it offers to those of us who just need to talk sometimes, and to, possibly, offer something that may help others.

Macbeth

@macbeth

@IndianaScott
I will begin with an experience very different from yours, but, nonetheless, the source of very deep grief in my life.

Many, many years ago, before I met my husband, I loved someone. He died in a car accident one night when I was not with him. This may not sound like a major tragedy to many people, but I loved him fiercely, and it nearly killed me. Really, it nearly killed me. At that time, I was working for a government agency where there were many social workers, and one was a friend of mine, who encouraged me to begin to attend group counseling meetings for people in grief. I didn’t want to go, and, actually, am not advocating that sort of thing. But I did go to one set of sessions, and learned this: Grief is very personal and individual. Everyone grieves differently and for different amounts of time. Each person who is grieving has to do whatever THEY have to do to get through it.

At that time, I was lucky to still have my mother and my sister, both of whom have since passed, and a couple of dear friends, all of whom were right there with emotional support. For me, it helped to talk. They must have earned their wings during those days, weeks, months, and years, and during that time I just eked by, going through the motions of life. Then, one day, someone said something that, somehow, made me laugh – just a little. At that point, the sound of my little laugh was so foreign that it sounded odd, even to me, and I cried some more. But then, in time, it happened again, and, eventually, again, and so forth.

But, my big point is what I learned at those dreadful grief counseling sessions: Grief is personal. Grief is different for everyone. A person has to do what THEY have to do to get through it. Learning to live without a loved one in your life, and/or with the circumstances of their last days and passing, is a process. It takes time.

I still miss my father, who passed 41 years ago, after suffering Alzheimer’s for over a decade. I still feel the loss and pain of watching him go from being a proud, well-mannered, dignified, leader, to the shell of a person that he became.

I still feel the horror of having to relegate my mother to the care of a nursing home for the last year and a half of her life due to paralysis after a stroke – with experiences that are far too long and troublesome, and too disturbing to go into here and now.

And now, my husband, the love of my life, has dementia, and it is, again, very difficult to watch this happen to him. But I just keep going. Things keep changing. Sometimes good and happy times get stirred into the mix.

My thoughts are with you. Just keep going. Things will change.

Thank you for this site, and for all of the opportunity it offers to those of us who just need to talk sometimes, and to, possibly, offer something that may help others.

Macbeth

Jump to this post

@macbeth What a wonderful experience you shared with all of us! I love your phrase, “Sometimes good and happy times get stirred into the mix.” It reminds me of the “railroad track” visualization that good times and hard times are often side-by-side, but it’s sometimes hard to recognize the good track when it is so close to the track of grief and sorrow. Thanks for your input. it sounds as if you have learned a lot from your losses and you are to be commended!

@macbeth

@IndianaScott
I will begin with an experience very different from yours, but, nonetheless, the source of very deep grief in my life.

Many, many years ago, before I met my husband, I loved someone. He died in a car accident one night when I was not with him. This may not sound like a major tragedy to many people, but I loved him fiercely, and it nearly killed me. Really, it nearly killed me. At that time, I was working for a government agency where there were many social workers, and one was a friend of mine, who encouraged me to begin to attend group counseling meetings for people in grief. I didn’t want to go, and, actually, am not advocating that sort of thing. But I did go to one set of sessions, and learned this: Grief is very personal and individual. Everyone grieves differently and for different amounts of time. Each person who is grieving has to do whatever THEY have to do to get through it.

At that time, I was lucky to still have my mother and my sister, both of whom have since passed, and a couple of dear friends, all of whom were right there with emotional support. For me, it helped to talk. They must have earned their wings during those days, weeks, months, and years, and during that time I just eked by, going through the motions of life. Then, one day, someone said something that, somehow, made me laugh – just a little. At that point, the sound of my little laugh was so foreign that it sounded odd, even to me, and I cried some more. But then, in time, it happened again, and, eventually, again, and so forth.

But, my big point is what I learned at those dreadful grief counseling sessions: Grief is personal. Grief is different for everyone. A person has to do what THEY have to do to get through it. Learning to live without a loved one in your life, and/or with the circumstances of their last days and passing, is a process. It takes time.

I still miss my father, who passed 41 years ago, after suffering Alzheimer’s for over a decade. I still feel the loss and pain of watching him go from being a proud, well-mannered, dignified, leader, to the shell of a person that he became.

I still feel the horror of having to relegate my mother to the care of a nursing home for the last year and a half of her life due to paralysis after a stroke – with experiences that are far too long and troublesome, and too disturbing to go into here and now.

And now, my husband, the love of my life, has dementia, and it is, again, very difficult to watch this happen to him. But I just keep going. Things keep changing. Sometimes good and happy times get stirred into the mix.

My thoughts are with you. Just keep going. Things will change.

Thank you for this site, and for all of the opportunity it offers to those of us who just need to talk sometimes, and to, possibly, offer something that may help others.

Macbeth

Jump to this post

@hopeful33250

Thank you. I appreciate your kind words and support, and the railroad analogy. That analogy is a good one, I think.

“Sometimes good and happy times get stirred into the mix.” …… I just started reading “Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief” by Pauline Boss. I’ve been flying through it seeking answers and comfort to my grief, fears and feelings of loss. I know I will need to go back and more slowly digest the ideas she is presenting but something that truly resonates with me is ambiguous loss — “the duality of your loved one’s being absent and present at the same time is confusing and finding meaning becomes immensely challenging.” (p1) …. ambiguous loss offers no possibility of closure and with dementia it is continually changing. As first a wife and second a care giver, I am being asked to accept ambiguity in our relationship as the new (ever changing) normal — stressful, absolutely…. along with all of the other emotions that come when something is outside of my control and I am having to make decisions that impact both of us forever… but simply having someone recognize and label “ambiguous loss” is helping me to feel less alone in this bizarre world we have entered.

@tavi
Thank you for posting this. The recognition and understanding of the duality and ambiguity helps. For some reason, it helps me to know that it has been defined, studied and explained, and that someone else understands what it is like to live like this, and that there is a way to explain it to/for others. I am not going to read the book at this time. Right now I need to engage in a bit of escapism, and, although there is little time for such, I have begun a book that will take me away from it all. But I appreciate what you have shared!

@tavi

“Sometimes good and happy times get stirred into the mix.” …… I just started reading “Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief” by Pauline Boss. I’ve been flying through it seeking answers and comfort to my grief, fears and feelings of loss. I know I will need to go back and more slowly digest the ideas she is presenting but something that truly resonates with me is ambiguous loss — “the duality of your loved one’s being absent and present at the same time is confusing and finding meaning becomes immensely challenging.” (p1) …. ambiguous loss offers no possibility of closure and with dementia it is continually changing. As first a wife and second a care giver, I am being asked to accept ambiguity in our relationship as the new (ever changing) normal — stressful, absolutely…. along with all of the other emotions that come when something is outside of my control and I am having to make decisions that impact both of us forever… but simply having someone recognize and label “ambiguous loss” is helping me to feel less alone in this bizarre world we have entered.

Jump to this post

@tavi Thanks for sharing those thoughts. Ambiguous loss describes so well the situation of caregivers in your situation. Sounds like a great book. This is a wonderful contribution to our Mayo Connect community!

@macbeth Enjoy your book! Yes, some light reading can be just the escapism needed. It is good when you know how to pull back and take care of yourself!

Liked by macbeth

@tavi thank you for telling us about the book you’re reading.
For anyone who wants to read a bit more about ambiguous loss, here is a free online handbook from the Alzheimer’s Society http://bit.ly/2eaUY0W

Liked by macbeth

Hi everyone, the caregivers group has been a little quieter than usual for a few days, so I thought I would check in. I was thinking in particular about the topic of grief and holidays. As we know, feelings of grief can come up at unexpected times. Holidays, of course, can be especially difficult. There are things all around you that trigger memories and we probably have to acknowledge that grief will likely be a guest during the holidays. With Thanksgiving just around the corner, I wanted to reach out and offer this space to talk about what you fear, loathe and look forward to this holiday when there’s loss and an empty spot.

@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!

@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!

Jump to this post

Thanks, but not for me not for now. Sorry.

@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!

Jump to this post

@IndianaScott No problem. Whenever you feel like sharing. let us know, all of you are in my thoughts.

@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!

Jump to this post

@colleenyoung
@hopeful33250
I have been avoiding this site, recently, due to my emotional state (very down) and due to my husband’s health – a scary incident leading to an ER visit last Friday night, and seemingly more rapid cognitive decline since that. I know that, that’s what this site is for, but it has been sudden and overwhelming, and I am hoping that, with time, I will adjust.

Getting on to remembering lost loved ones – I do not do anything different at holiday time than I do year around. For me, when I have lost a family member, family gatherings just emphasize the loss. Not that I haven’t gone to them, but they seem so empty, hollow. Instead, the “missing” are with me on a daily basis – the love they gave me, the lessons they taught me, the strong ways in which they influenced my life, opinions, attitudes.

Baking – any time of the year – especially certain things, like breads or sweets, or traditional/ethnic foods – is what makes me feel tied to my mother, a special aunt, my sister, my grandmothers, and all the women who came before me for hundreds of years. It is a thread that links us – a tie that transcends time, life, and death. This is how I feel, however, every time, all year around, that I cook certain dishes, or bake certain breads or sweets, or TRY to make potato salad like my late sister’s. I can feel them – they are standing next to me, counseling me. I can hear my aunt, or my mother: “Watch the flour. Don’t make the dough too stiff.” or “Add a little more of …”, or my sister’s: “It’s a little flat. Add just a bit more seasoning – but just a bit.” They are always with me in the kitchen, although I seem to do less cooking and baking these days.

With my dad, it’s remembering his opinions and influence, his strength and dignity, when making decisions. Or, when I feel like crying or giving in, I can still hear: “Straighten up now. Be strong.”, and either “Don’t cry, now.” or “Don’t cry in public.” or “Don’t let them see you cry.” “Aw come on now, you can do that.” “Sure you can.” “Why don’t you go play basketball with the boys!?” (Good grief! I was one of the shortest kids in my class in grade school. And he did have three sons, too, but he thought I could, and that I should, too.)

Every time I see milkweed, I remember two young girls – my sister and I – walking down dusty country roads, digging the soft silk from the pods and throwing it to the wind and making a wish if a piece of it landed on either of us. When I see lightening bugs, I think of us, as young girls, at our grandparents’ farm, running through the tall grass at dusk, trying to catch lightening bugs, sharing a bed, there, on hot summer nights, windows open, listening to the frogs singing. There are a million more memories from over the years. Oh, man, I miss her, but I’m so glad she was my sister for a while.

They’re all still with me every day, in many ways, and I try to keep them alive by remembering what they taught me, and by trying to preserve those things and use them.

@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!

Jump to this post

@macbeth
Please know that I’m thinking of you and fully understand your comment about avoiding this site for awhile. I have been avoiding too and your note pulled me in – thank you. I understand reflection is needed but sometimes it just seems to fall to the bottom of the pile of everything else that needs to be done.

Also, thank you for your note about loved ones and memories – you describe so well how our loved ones who have been so much a part of us in life continue to be “present” with us throughout our lives on a continuous basis when they are no longer physically present. In addition to the memories that are stirred within when doing previously shared activities, I also love to touch, look at and feel tangible items to help refresh and strengthen my memories — photo albums are the more obvious — but treasured quilts, dishes, letters, books, etc that embody the relationship I had with these people bring us closer together. I actually started to use one of my grandmother’s quilts earlier this year to feel closer to her and remember her strength during this very difficult journey. These “things” are symbols of our relationships and I know if all were lost, my memories might become more sketchy but I would still treasure and hold close the relationships through feelings. I need to think some more about if holidays are more difficult than any other day…

Please login or register to post a reply.