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Early Grief and the Long Goodbye

145 Comments

Thank you Carol for sharing your story. You always make me feel better. I lost my dad tragically and suddenly 7 years ago. It was hard on my heart, and I didn't think anything could compare to my sadness. Then my mom broke a hip and has been in a nursing home for almost two years now. She came out of surgery completely demented. My life has not been my own, and the long goodbye is utterly draining, depressing, arduous, and has ripped my family apart. My mom's mind is completely gone, but her heart could go on for years. I have come to terms with this, but at times my love for my mom has been tested. Resentment, fighting with siblings, and trying to balance my time, between being a daughter, wife, mom and having a career has proved to be impossible. I'm learning to take care of myself, but this has been the worst time of my family's lives.

Thanks for this article I too am experiencing a Terrible Painful long goodbye with my mother. My feelings are all over the place and it feels very lonely because I don't think anyone can ever understand. I have been taking care of my mother for roughly 20 yrs. due to MS. My father left her and there is no-one else. My siblings are just not capable. Additionally my mom was never nice to me or happy with me. She has been on hospice close to a year now and I just can't go to the nursing home anymore. I can't watch anymore decline. I don't want to see her emaciated and demented to add to all my pain. I just want her to pass away. I just want to be free. I truly hope someone understands this.

sincerely
drowning

StephanieGail,I hope that your grief hope that your grief is becoming more bearable with time. KenyaG, your situation is terribly hard. I hope that you are working with a counselor. Our loved ones are never completely gone. They live within us. Blessings to you both. Carol

I been grieving about 4 years since my mom had passed away from lung cancer/metastatic brain cancer. I do suffered from all this trauma is schizoaffective disorder and manic depression. I cried consistently.

Thank you for this article. My 56-year-old husband has been disabled for six years due to dementia caused by a progressive form of MS. His cognitive dysfunction has been getting worse, and I'm grieving the loss of the person he used to be. We have one child still at home, and he is autistic. Being a caregiver is hard, especially with a dearly loved spouse.

4him4Him, I'm so glad that the article helped, as well as all of the comments that followed (and are still following) the article.

These comments show you that you aren't alone. Anticipatory grief has been "labeled" for a long time, but when I wrote this article I hadn't found anything on the grief that we feel over observing the decline. That kind of grief isn't the fear that our loved one will die. It's grief over losing what was but in a far different way than the grief of death. Watching their suffering and feeling our own - it's a unique grief all of its own.

Those of us who have been through what you are going through know exactly what you mean and how you feel. Our hearts are with you.

Please update us when you feel that we can help just by saying "we hear you."
Try to take care of yourself,
Carol

Your article and the comments are so helpful to me. My dad has had dementia (probable AD, but never had it diagnosed) for well over 10 years. My mom died in 2009 and I became his caregiver. I have had times of resentment and of weariness and times of joy and many treasured moments. My dad is in middle of FAST stage 6 and is now on hospice care. I have, as was written, been grieving with the loss of each level of independence and function. It is horrible ugly disease for him to experience and me to watch. Now, with his current acute illness, he has immediate and pronounced exacerbation of dementia and it is heart-wrenching beyond anything I could have ever imagined. I have felt so much guilt just in the last 5 days, I have had times I didn't know if I would make it. Reading of others who have and are going through this anguish helps. I understand now that I have had both early grief during the long goodbye and now anticipatory grief. I will be talking with hospice counselor soon, but this article so helps me. Thank you.

Dear Devastedinco.....Hugs and prayers go out to you. The long goodbye is indeed long and no one has any easy answers. Talking to a psychiatrist has been helpful for me because he is impartial and so willing to let me get things off my chest. I found that talking to family members was too stressful. I also keep a gratitude journal to keep track of the good moments however few, but also to keep me grounded and I've found that if I express my gratitude for all that comes my way it just seems easier to cope. Dementia is a terribly cruel disease and caregivers need respites, prayers, and any help that others might be willing to give. You could also look for a support group to attend...they often have suggestions that are very helpful. Keep the faith, pray and journal if you can.

Thank you Carol and Martina16 for your advice. It helps to know people care. It came at a much needed time. Today would have been my fathers birthday. Thank you again.

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devastatednco I feel for you & hear how much loving care you are giving to your mother. I am caring for elderly parents & until I read this article didnt understand the immense grief of this special time.I dont think many people do. I am learning to put in place small changes to help myself as I got so burned out & it does help me cope
better. Could you try visting alternate days to the nursing home & spend a little bit of that time catching up or supporting yourself in some way?

I know for me even thinking about taking time for my life put me into panic mode before I did it. Its hard to see how our own emotions with so much need & dependancy of others on us. You have a double grief with the traumatic loss of your father & the slow decline of your mothers health. It is no wonder your heart is breaking. Try to think about how to take some precious moments for you & see yourself with the compassion & kindness you deserve for all that you are giving. map