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?

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Mentor
Scott, Volunteer Mentor | @IndianaScott | 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

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Good morning @mnina Caregiving is often nothing short of a brutal assignment for which we receive no training and no 'employee manual'! Remember we only find super heros in the comic books and not in caregiving! Often what we are confronted with is simply beyond our abilities. You show great strength in seeking assistance!

While I know each patient is unique on their journey, but in the case of my wife, she too lashed out at me the most. Her neuro-oncologist explained to me it was because she felt the very safest with me so she could vent, rant, etc. and know my love would still be there afterwards. Her anxiety was never able to be corralled by the doctors in her case and that was a highly challenging situation for me. She couldn't focus on anything for longer than a few seconds at a time. I agree this can be an incredibly exhausting aspect of caregiving! In cases such as your water and dishes, I would simply say 'ok, I'll watch that. Thanks for letting me know.' More often than not that ended that particular concern -- for that moment until it came back up again.

My wife, too, showed very different personalities during the course of her war. I say while I was married to one woman for 41 years I was married to about a dozen different people. Chronic disease and longtime disease fighting takes its tolls in some very challenging ways for sure.

Sending strength, courage, and peace!

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

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Thank you. I do feel better , especially knowing that I'm not the only one and I'm not going to lose my common sense over this, With Gods Grace. Thank you.

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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

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Thank you for your honest post. I think you're so right when you say your wife had about a dozen different personalities. It's hard for caregivers to adapt to these changes.

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Harriet Hodgson | @harriethodgson1 | Sep 24, 2017

Demented loved ones can say confusing things and, every once in a while, say something profound. When my mother became more difficult, I could usually calm her by saying "I love you." After a while that didn't work. One day I told her I was doing my best. "You may be doing your best," she replied angrily, "but it isn't good enough." What a hurtful comment. Later I realized my mother was right. My best wasn't good enough to make her young again. My best wasn't good enough to restore mental functions. My best wasn't good enough to make her happy. All I could do was continue to love her, manage her finances, and provide the best possible care.

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

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I thank you again for your words. All the respondents have given me a better understanding and insight of what's happening. It's also given to a new level of grief too, as it's been happening for two years now, I'm really trying to accept this reality and accept that the man I once loved and still do, in a different way, cannot love me back. Now I am seeing that self care and self love is crucial. Thank you once again.

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sallysue | @sallysue | Sep 25, 2017

Hi. I'm here for you but the others are much better help than I will be. I am in year 4 of caring for my sister with early onset ALZ. They help me a LOT and I know we have a long way to go. But I'm pressing on with the help of this group. I'll keep up with you in my thoughts and prayers.

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1 reply
Harriet Hodgson | @harriethodgson1 | Sep 25, 2017

We can all help each other and become a caregiving team. Knowing we're not alone can, hopefully, be a source of strength.

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mnina | @mnina | Sep 25, 2017
In reply to @sallysue "Hi. I'm here for you but the others are much better help than I will be...." + (show)
@sallysue

Hi. I'm here for you but the others are much better help than I will be. I am in year 4 of caring for my sister with early onset ALZ. They help me a LOT and I know we have a long way to go. But I'm pressing on with the help of this group. I'll keep up with you in my thoughts and prayers.

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Thanks sallysue, the really hard parts of caring seem to come in peaks and waves. The others have really helped for sure. The other night when I checked into the group I felt so alone and lost. Today is better. And I will reread the posts too, to remind me that I can trust myself in this process. Thank you and I hope you have a good day.

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Harriet Hodgson | @harriethodgson1 | Oct 17, 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!

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Thank you for sharing your story Scott. Loved your comment about courage. My husband is a retired physician, is disabled, and lives life in a wheelchair. Mayo Clinic rehab has done so much for him--taught him to stand, stand and pivot, and take a few steps in a walker. I hung a saying behind my desk, one I saw on the wall of rehab. It reads: You never know how strong you are until being strong is the only choice you have." This quote applies to countless family caregivers. So glad you have given yourself permission to feel your feelings--a healing step.

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