1. < Caregivers: Dementia

Dementia and the grieving process: How are you coping?

Posted by bl2016 @bl2016, Aug 17, 2017

My husband is in the late stages of early onset alzheimers. I feel that I have been saying goodbye slowly for 10 or more years. I feel more detached from him emotionally all the time while at the same time feel so sad watching him disappear. It is a struggle and it seems that no one else really understands. How are some other caregivers who are losing the love of their life coping?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 23, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

Hello @mnina I am Scott and I am sorry to hear of the health challenges your husband faces as well as the caregiving burden you are facing. My wife fought brain cancer for over 14 years after we were told she might live for 7. When she was prescribed hospice (she opted for home hospice) they told me 6 months or less and she fought on for 14.

No doubt caregiving and grief often go hand in hand. In my experience I found the grieving process to be a very personal journey and very different for me than my wife. There is no 'one path' and certainly patients each react to their mortality being in their face every day, twenty-four hours a day, differently from one to another. As with us caregivers, their grief journey is unique.

That said what I found helped my wife and me the most, although this is based her experience and I am not any kind of medical professional, was for me to become a world-class listener. I found the more I let her express her feelings to me the more she was able to finds some periods of peacefulness. It was not easy and often I will admit it was grinding, but it allowed for a validation of her feelings and helped her, especially through her periods of darkness.

I came to realize, as much as I might want to, I could not force her to be happy or content or whatever if she was not feeling that way. I would remind myself that while I felt caregiving was a tough road, she was really the one who had the toughest path to follow -- having her health, future, etc. stolen from her. She also finally admitted she felt guilty at times by the burden her illness placed on the family and me. Once she said that I was finally able to help her talk through those feelings. So often just saying something out loud helps lift the feelings and attitudes of patients. Plus that is why I sought out Connect in the first place -- as a place to talk out my feelings during my years of caregiving.

I wish you continued strength, courage, and peace.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 23, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

Thank you for sharing your story. It illustrates the power of anticipatory grief and the challenges it creates. Sending you virtual hugs.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 23, 2017

Thank you for sharing your story. Like SallySue, I hope you find peace.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 23, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

The gift of listening is a profound gift of love.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 23, 2017
In reply to @IndianaScott "Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war..." + (show)
@IndianaScott

Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war with brain cancer and a few years ago lost my mother in law to dementia. I have heard Alzheimer's referred to frequently as 'the long good bye'. I was my wife's primary caregiver for her 14 years and I, too, felt I was on a emotional mishmash. It is a struggle as you point out and few, other than those who have been through it, truly understand. Very few did in our case that is for sure.

Coping, as with grief, is a highly individualized experience. I was misled into believing grief followed the 'stages', which are so often touted. This made my personal journey in grief all the harder as I do not experience it anywhere near what the books and 'experts' forecast.

My wife and I were married for 41 years and nothing prepared me for many of the feelings I now have in this different life. I do give myself permission to simply have my feelings -- and follow the path as I am experiencing it. I also have a mantra taped up by my desk which says "Courage does not always roar. Sometimes it is a quiet voice at the end of the day whispering 'I will try again tomorrow'. My father was an alcoholic so I also firmly believe 'one day at a time' is a solid way to make your way through grief, but that, as I said, is just me.

Expect an emotional roller coaster and know that no matter what you are feeling it is the right way for you to feel!

I look forward to your staying in touch and asking any other questions you might have. I hope I have helped and not hindered.

Strength, courage, & Peace!

Jump to this post

This is my 20th year as a family caregiver, and I am very isolated. Although friends know my story, and sympathize with me, I rarely see them because of the demands of caregiving. To make contact with others, I write articles and books, write for three websites, and give talks about caregiving. These steps help to reduce my feelings of isolation.

REPLY
mnina | @mnina | Sep 24, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

Thank you for your words regarding the gift of listening. I find that one very challenging for me right now . He is in so much fear of the future when I am around him he criticises my actions on simple daily life stuff, like how much water I use to wash dishes and throwing away a small end of a bread loaf. The micro managing is a form of anxiety I'm told. He's on antidepressants but I feel this situation is getting harder for me to mentally tolerate. I have a carers break when he's go into the hospital for a couple days of treatment. I'm sleeping in another room. I think I'll call my cancer counsler and ask for help. He's becoming less and less of the man I use to know and it's frightening me.

REPLY
mnina | @mnina | Sep 24, 2017
In reply to @IndianaScott "Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war..." + (show)
@IndianaScott

Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war with brain cancer and a few years ago lost my mother in law to dementia. I have heard Alzheimer's referred to frequently as 'the long good bye'. I was my wife's primary caregiver for her 14 years and I, too, felt I was on a emotional mishmash. It is a struggle as you point out and few, other than those who have been through it, truly understand. Very few did in our case that is for sure.

Coping, as with grief, is a highly individualized experience. I was misled into believing grief followed the 'stages', which are so often touted. This made my personal journey in grief all the harder as I do not experience it anywhere near what the books and 'experts' forecast.

My wife and I were married for 41 years and nothing prepared me for many of the feelings I now have in this different life. I do give myself permission to simply have my feelings -- and follow the path as I am experiencing it. I also have a mantra taped up by my desk which says "Courage does not always roar. Sometimes it is a quiet voice at the end of the day whispering 'I will try again tomorrow'. My father was an alcoholic so I also firmly believe 'one day at a time' is a solid way to make your way through grief, but that, as I said, is just me.

Expect an emotional roller coaster and know that no matter what you are feeling it is the right way for you to feel!

I look forward to your staying in touch and asking any other questions you might have. I hope I have helped and not hindered.

Strength, courage, & Peace!

Jump to this post

Thank you for your words. I too, feel isolated in a small country town. I will try writing more too.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 24, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

Getting some help sounds like a good idea. When my mother criticized me, I realized it was dementia talking, not the amazing mother of my childhood. I also realized, yet again, that her life had become a confusing maze. Mom felt lost and scared. Reversing roles mentally with my mother helped me to cope with her behavior.

REPLY
Harriet Hodgson | @harriethodgson1 | Sep 24, 2017
In reply to @IndianaScott "Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war..." + (show)
@IndianaScott

Hello @bl2016 I am Scott and I recently lost my wife after a 14 year war with brain cancer and a few years ago lost my mother in law to dementia. I have heard Alzheimer's referred to frequently as 'the long good bye'. I was my wife's primary caregiver for her 14 years and I, too, felt I was on a emotional mishmash. It is a struggle as you point out and few, other than those who have been through it, truly understand. Very few did in our case that is for sure.

Coping, as with grief, is a highly individualized experience. I was misled into believing grief followed the 'stages', which are so often touted. This made my personal journey in grief all the harder as I do not experience it anywhere near what the books and 'experts' forecast.

My wife and I were married for 41 years and nothing prepared me for many of the feelings I now have in this different life. I do give myself permission to simply have my feelings -- and follow the path as I am experiencing it. I also have a mantra taped up by my desk which says "Courage does not always roar. Sometimes it is a quiet voice at the end of the day whispering 'I will try again tomorrow'. My father was an alcoholic so I also firmly believe 'one day at a time' is a solid way to make your way through grief, but that, as I said, is just me.

Expect an emotional roller coaster and know that no matter what you are feeling it is the right way for you to feel!

I look forward to your staying in touch and asking any other questions you might have. I hope I have helped and not hindered.

Strength, courage, & Peace!

Jump to this post

Writing helps in many ways. I think writing affirmations helps family caregivers. First, it makes us focus on the blessings in our lives. Second, it changes our thinking from negative to positive. Third, it creates a framework for our lives. I recommend one-sentence affirmations because they are easier to write and remember. Your first affirmation: I can write affirmations!

REPLY
mnina | @mnina | Sep 24, 2017
In reply to @harriethodgson1 "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..." + (show)
@harriethodgson1

I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and stress increased. A friend of mine, who is a certified grief counselor, told me I was going through anticipatory grief. Everyone feels this at one time or another in their lives, yet many have never heard the term. Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Her comment got me researching anticipatory grief and I continue to do it. I wrote a book about it (Lois Krahn, MD co-autthor) and have written articles about it. For quick info read "Why is Anticipatory Grief So Powerful?" on The Caregiver Space website, http://www.thecaregiverspace.org/author/hhodgson

Jump to this post

Thank you. I will ask for help. I will try to remember to not react but to think he's unwell in a way I don't understand. I don't feel safe around him when he's like this. He hasn't become verbally aggressive in about 8 months but I guess I fear it may happen again. I find feeling unsafe very difficult to manage. I feel unsafe because when I try to explain or talk it through it turns into an irrational argument , that's when I realise there's nothing to argue about. Really. Like how much water is too much to wash dishes.

REPLY
View MoreView Less
Please sign in or register to post a reply.