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bl2016 (@bl2016)

the grieving process

Caregivers: Dementia | Last Active: Oct 17, 2017 | Replies (29)

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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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Replies to "I was my mother's family caregiver for nine years. As her dementia increased, my anxiety and..."

Hi, my husband was in ICU after a stem cell transplant and we were told it’s time to call the pastor and family in, well as we waited for him to pass, hours passed, then days, then weeks, when he was discharged he was told it was terminal with 2 to 4 months to live. This was August 2015. He’s still alive, angry and at times full of self pity, grief has been with me a long time and it battles with my nature to appreciate life on a daily basis. Grief and death seem to have just moved in , hanging in the shadows. Affecting my husbands moods , well, he’s kind of just becoming a miserable person, not all the time but most of the time.

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.

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

The gift of listening is a profound gift of love.

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.

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.

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.

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!

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.

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.

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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