Why is anticipatory grief so powerful?
illustration of a blind folded girl sitting with her back against a heat to represent grief

Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.

To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.

Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.

Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.

Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.

Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.

The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.

Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.

Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.

There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”

Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.

You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.

Understanding anticipatory grief can keep you going too. Joining The Caregiver Space Facebook groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.

Written by Harriet Hodgson
Rochester resident Harriet Hodgson has been a freelance writer for writing for 38 years, is the author of thousands of articles, and 36 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support. She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN. A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories. All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com

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98 Comments

  1. My husband of 48 yrs, is suffering from mid-stage emphysema. He was a welder/ironworker for over 30 yrs. and suffers the the “death” of emphysema…. for 20 yrs. now we have been waiting. He has about 3-4 yrs. left. I am a Child of God and we BOTH await his homecoming. It’s just sooooo very hard to let go after all these years. I know I will see him again, BUT what will I do without him but exsist??? Has ANYONE any ideas?? The Lord tells me I need empathay and REAL compassion. Is there ANYONE out there?? FOR REAL IN THE NAME OF JESUS that can be a friend???? A woman perhaps………PLEASE?????
    Starheart in tremendous pain…

    Reply
  2. I just discovered the term “Anticipatory Grief” today. I have two relatively healthy parents but they are my best friends and my entire support system. I have been dealing a lot with having intense anxiety and grief over the fact that one day I will lose them. I have no idea when it will happen, a car crash next week or them going peacefully in their sleep in 20 years….even though the odds say we still have time together now I cant stop thinking about it. I feel like I’m going insane.

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    • Rachel, I can relate to what you describe. I am an only child who has been blessed with a close relationship with my parents, who an ever-present source of love and support. Even before the Covid-19 situation, I have experienced anxiety over thinking about losing them and what my life will be like without them, but the current situation has exacerbated it, particularly this Christmas. They live in their own home now, but I desire to move before next fall to be closer to them as a source of support. You and your parents with be in my prayers.

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  3. I’m in this phase right now. Caring for an elderly relative with end stage heart failure, frequent emergencies. It’s physically painful, frequent crying jags, my own heart feels like it’s about to snap, but I can’t do anything but wait.

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  4. As a caregiver who lost a wife of 18 years, I would love to know the research on the positive effects of anticipatory grief. In telling both the challenges and the constructive aspects will allow for those who read this article to know that both experiences are “OK”. See post-traumatic growth vs post-traumatic stress.

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  5. I want to hold you.

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  6. I never knew the emotions I experience day to day actually are “normal”. I have been wondering if the day to day stress was finally pushing me over the edge. For me, it is my husbands health. We have been married 30 years but in the last 10, his health is deteriorating at an alarming rate. Now there is the complication of numerological problems in addition to the physical. Some days, it is too much to deal with and others, I feel numb.

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    • We mourn for the loss of many things with dementia. It starts with losing the life you had. Losing friends. Slowly losing your relationship. Losing your love and many things .

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  7. My heart and emotional state has not been the same for several years. Since the diagnoses of my moms’ illness and her death a year ago. I will never stop missing her and tears and sadness continue to come in waves.

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  8. It is extremely lonely place. Cry when I wake up, cry before bed. Cry in the car to and from work. No one seems to even notice or care.

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  9. I kept trying to take part in grief counseling when my mom was in hospice care. They thought I was crazy.

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  10. This is my everyday thoughts.I try very hard to push it away but it invades the mind as a slow enemy.Dealing with dementia is cruel but I try everyday to appreciate the small things.Right now I’m up for long night-no sleep tonight… thank god for fb.at least there’s a place to go to talk.I am so thankful to be able to help now because its not always going to be this.Love has no limits it just gets sad but I am lucky.

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  11. John Allan Wolmer, I go through this every day

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  12. Yes, I had it bad after my moms cancer diag, when I was away from her I was always visioning, breaking down; thoughts of losing her overwhelmed me.

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  13. Thank you so much for sharing this article! This is exactly what I have been living with since the end of September 2016.

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  14. This is helpful right now Sherri Francis. I have already been grieving for years.

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    • Thinking of you Phyllis with so much ❤. I think this site is an absolute blessing. It is a great resource both during and after the care giving. I’m so glad it is of help. Gentle hugs to you

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  15. This applies to taking care of mentally ill children as well, when they self harm, are suicidal, and have BPD. It is a roller coaster that never ends. Sometimes even understanding is not enough because the cycle never ends.

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  16. I might add that the guilt you feel for wanting it all to end is also another stressor that isn’t often talked about and not something we want to admit to ourselves let alone anyone else.

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  17. I know understand what I am going through.

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  18. Hi!

    I had no idea what I’m feeling even had a name… Things are good for my husband now. Well, as good as can be I guess. … But I keep asking myself, ” how long is the good going to last “… And from there, my feelings take a downward dive again.

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  19. my mother has dementia ( she still knows us but there will come a time when she doesnt ) she also has an aneurysm which if it blows she is already to old and frail for them to fix. knowing what is coming but not knowing when and knowing i will be left with an autistic daughter depending on me ………………..

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  20. My only son was diagnosed with Glioblastoma Multiforme Brain Cancer in 2011 at age 21. A 8.6cm tumour. which is a terminal illness. He has survived almost 5 years which is quite a miracle and life for him and us (his family) is relatively normal again. However, it is still a terminal illness and as his Mother I live with the fear that it will return. I grieve for what him, what he will miss out on. I am terrified that I won’t be able to handle him dying. Believe me, I am so very grateful that James has had so much time almost no GBM sufferers get, but my greatest fear in life is to loose one of my children.

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  21. Thanks for your post Liz. Your road is tough now, but I suspect that you are stronger than you realize. In 2007 my elder daughter died from the injuries she received in a car crash. Today, eight years down the road, I focus my thoughts on her strengths and giving nature. Raising her twin children (their father died in another crash) was, and continues to be, our memorial to her.

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  22. When my father died in a terrible situation surrounding complications from Parkinsons, I thought I would never endure anything as terrible. Then when our son died in an accident, I was proven wrong. Now that my mother has been diagnosed with ALS (later stages) I am truly humbled and just trying to muster the strength to do for her what she did for me during our previous losses. You took your energy and made it in to something to help others. I am inspired by that and hope that one day I can do the same (but in a smaller format of course).

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  23. Thank you Joy. I hope Smiling Through Your Tears helps you.

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  24. As many have said before, caregiving is such a roller coaster ride, with so many ups and downs. Anticipatory grief also ebbs and flows, but there is always that heightened state of alert that you are on, with every phone call making your heart race with anxiety. Health doesn’t always decline on a steady downward spiral; and I can relate to those who wish the end would just mercifully arrive. Even though my mother has been gone for over three months now, and my father died almost 4 years ago, I still feel my pulse quicken when the phone rings.

    I will be sure to add your book to my reading list.

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  25. Thank you for reading my article. I would be glad to talk with you.

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  26. Anticipatory grief seems such a powerful and accurate concept. I’m a graduate student in NYC studying caregiving, and I have been focusing precisely on the anticipation of grief and the “putting your life on hold” aspect of caring for someone elderly in the family. Caregivers I’ve spoken with really stress this aspect of very emotionally charged uncertainty. Your work seems so interesting and insightful, I will certainly read the book. Also I would be happy to talk to you or possibly interview you for my research, if you agree. My e-mail is [email protected]. Thanks and congratulations on your work!

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  27. This is exactly what my mother went through with my Dad who just passed from Parkinson’s disease. She was his main caregiver for three years, with the help of many aides. She never knew when it would end which added to her stress and worry. I’ve written a lot about their journey in my blog. Thank you for bringing this to the light.

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    • Thank you for reading my article, Laurie. I hope your mother is doing well.

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  28. I have some understanding of your feelings. Year ago, I wrote three activity books for Mayo Clinic to prepare young children, elementary age children, and high school kids for heart surgery. Your son is doing well now. Enjoy every moment with your miracle baby.

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  29. I feel like this is what I’m feeling but it is with my 21 month old son. I don’t want his end to come, surely not before my end. But with his congenital heart defects, a single ventricle heart amongst them…we’re reminded of the fragility of life daily. I live in the moment with him….but I’ve come to where I don’t want to be away from him in case that’s the last time. Or I put him to sleep and I look at this incredibly, perfect miracle sleeping and the thoughts bombard me and I just know if something were to happen to him, I wouldn’t be able to go on….And then it’s the fact that he’s doing well, he’s defied all odds and survived two open heart surgeries…and I feel like my “grief” is taking that success and hope away from him/us.

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  30. Thank you. I’m experiencing AG with both of my parents and my aunt. I’m their caregiver. For the three of them. They are 89, 85 and 87. Two weeks ago my father suffered a cardiac arrest. He survived.
    I want them to live forever and at the same time I’m so tired. I feel guilty. I cry every day.

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    • Thank you for reading my article Maria. In my experience, guilt is a waste of time and energy. You have nothing to feel guilty about. It’s normal to be exhausted, to want loved ones to live forever, and to want their lives to come to a peaceful close. You cry because you care, and I think this is a blessing of sorts.

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  31. Thank you so very much for putting a name to all these painful emotions I’m experiencing….its a relief of sorts….

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    • In time, I think you will understand anticipatory grief more, and find comfort in this understanding.

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  32. This is also very true with having fragile special needs children. This was my everyday life for about 5 years as my son has had over 25 surgeries, all but a few on his skull. I’m now thankful for his health and happiness we appreciate daily. We still have struggles, he just had a full spinal fusion and tonsil removal this year and another surgery next week but he is stable, and for that we are grateful!! Great article, thanks for sharing!

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    • Thank you for reading my article Kasey. You have obviously found ways to “live the moment.”

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  33. I lived with this for 13 years my husband just passed away at 54 exactly a month ago and all is so true. I was my husband’s sole caregiver and would do it again for him in a heart beat. AG affected my job, home and person. I am striving to now find out who I am again so I can move forward. I am still spinning and find myself trying to come to terms with life now but can only compare it to my life prior to the 13 years of pain, suffering and strife helping my husband. Thank you for putting this into perspective…

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    • Hi Julie, I’m so glad you found the article helpful. In my experience, people are more resilient than they realize. I believe you will create a new and meaningful life for yourself.

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  34. Thank you for reading my article, Elizabeth. As you have probably gathered, anticipatory grief and I are well acquainted.

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  35. Wonderful article. I just recently learned of this term from my therapist. Thank you for bringing it home for me. I thought I was the only one who felt this way. God Bless You!

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  36. I love your book. It is a life saver. It has helped me in so many ways already. Thank you and God Bless you!

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    • Thank you for your kind comments. I’m so glad you think my book is a life saver.

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  37. I appreciate your encouragement, and I am stronger. I will be ok. I am doing what I can to be my own person. Thanks so much and God Bless you!

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  38. I wish only good things for you Marie Grace. As difficult as these days are, I think you are stronger than you know.

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  39. Thank you so much for taking the time to read and response. I am ever so grateful. I will look into the other book also. I do feel better already today just having a safe place to let go. I feel I had lost my identity and morphed into this situation and lost my voice. Anger is what I realized was a big factor. Again! Thanks so much. God bless you for doing what you do.

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  40. Thank you for sharing your thoughts and your life, Marie Grace. One book I would recommend to you (other than my own) is by Amit Sood, MD, professor of medicine at Mayo Clinic College of Medicine and chair of the Mond Body Medicine Initiative at Mayo Clinic in Rochester, MN. His book is The Mayo Clinic Guide to Stress-Free Living. Dr. Sood has devised a simple program to alleviate stress that requires only 8 minutes a day.

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  41. Thank you for your response. I have started reading your book. I am in one of the darkest places I have been in a while. The only time I have any peace is when I am sleeping or when I spend time away from home. At home is not my peaceful place any more. My husband Ed is so limited now. I am feeling so drained and very robotic taking care of him right now. I am loosing all emotions except sadness and anger. He repeats himself over and over about stuff shows he has watched and thing he reads on the internet. He tries to fix me and he cant. I am going back to counseling next week and I am trying to find things that help fill me up. I have lost so much since both of us our progressing. He has his head about him and not his body. In a matter of time he will no longer have and use of his body and his mind will still be ok. I have days that I am feeling great and want to go out and live my disease and progression is different than his. I feel as though I am starting to ramble, because I have so much to say and I feel so trapped. I have been taking care of Ed for 6 years now. Each year getting worse. With each year getting worse. I latterly feel like every day I am waiting for the next thing that is going to change and how I will adjust to that again. I know he is going through his own stuff. I do. But I am sick and I am a caregiver and he is sick and I am latterly watching his progress before my eyes. All the work I have to do coming up how ever long that may take. In my heart I don’t feel its long. I always said I would take care of him. Its not the actual taking care of him that is my problem. Its what is happening to our relationship and the stagnation that is occurring in our home and me not having a balance in my life. There is always a to do list and I am always doing even when I do feel well. There is no days off and I have lost most of my friends and don’t have much support at all. I feel very lonely sad and very depressed and I am trying to shake it but it is tough. I often felt like I was grieving along the way. But when I saw your post I knew that’s it exactly. Now I need to know and learn how to make life easier as I am going through this process I am ever so grateful to have one person that truly understands and will be there for me with out judgment or criticism or trying to fix something they don’t understand. I find myself wishing things would go faster. I can say this here because I know its safe. He’s a great man and husband but I don’t like what is happening to us or me. I literally feel I don’t have a life of quality. This is breaking my heart. Thank you for sharing so you can help others. I appreciate what you have done and I am looking forward to getting more connected and helped here. Thanks you Marie grace

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  42. You are neither crazy or alone; you’re experiencing anticipatory grief. I can tell you, from life experience, that his feeling is more powerful than you might think. Thank you for ordering Smiling Through Your Tears. I hope it helps you.

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    • That’s what I am finding out is that its more powerful that I ever could imagine. I was looking for all the reasons to fix myself and what is wrong with me and my husband does the same thing. he is always trying to fix me. I have tried to explain this what I am going through. There is so much I can not say to him though because I feel I will make him feel like he’s a burden. I promised I would take care of him. I didn’t expect to go through what I am going through and have been going through for so long. I have been through so much in my life and my personal hard things the past couple of years, but I think this is harder than anything. Thanks for listening. Do you have any quick but temporary relief for a moment kinds of things you can share? or is it when you feel your heart and emotions ready to explode you just cry? Do you think I always have to explain my emotions to my husband? Thank

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  43. never heard the name before but it makes sense. Thank you for that. Will read the book. It comforts to know you’re not crazy or alone.

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  44. I bought your book right on the spot also. Looking forward to getting it. Thanks

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    • Thank you for buying Smiling Through Your Tears. It is designed for easy reading and I hope you benefit from it.

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  45. Hi My Name is Marie grace. I am ever so grateful for this article. I just went through a melt down just two days ago. This speaks to every thing I have been going through and trying to explain to some close people in my life. I have secondary progressive MS and my husband has progressive MS. I am his caregiver. I am slowly watching him progress. I know what’s coming. I am grieving my own loss of progressing and losing ability of my own health. This is the perfect message I needed to hear. I didn’t know there was a name to this. But I always knew when I tried to express what I was going through it was so tough. this explains it all. I know now it is normal and it is real. Thank you so much and I believe this is so timely for me. I needed a message and answer to my prayers and my cries. This was it.

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    • You are going through what I call “self grief.” I’ve tried to research this topic, using these search words, with little success. But I know it exists and you do too. My heart goes out to you and I wish I could be of more help.

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      • Thank you for looking that up. I think the worse for me is my husband and his progressing. If I didn’t take care of him while we were both progressing I think I would do better with my own grief. My grief comes from taking care of him til the end and then because of all the stress and depression I will not be ok because of it. I am loosing time in my life to life as I progress as I take care of him. I think for me that is my bigger challenge. I feel I will resent him after wards for taking from me what I could have lived. I know its not his fault, but I cant help see the future picture. I take care of him a
        until the end and then where will I be after all is done. Will I have a life will I be healthy enough to have a life, can I get a normal life back. Will I get friends back and will I socialize and do normal things with out guilt. I think that is where I am stuck. I don’t think I will be going his route of MS. But I can help but think it a lot when I am taking care of him and I am in a relapse and still taking care of him. I hope it doesn’t go on so long that that happens to me. I know it will be hard when he progresses and finally passes. But I feel I will want to get up and get going and live because I don’t know what with happen to me. I think my MS will quiet after the grief passes at lease I hope that will be the case. If not I think that would be very devastating to me. You are a great help. I know you will be. thank you. xoxo

      • Hi Harriet! I would like to share more about my life so when I am commenting you may get a better understanding of who I am. 16 years ago I met Ed. He already had MS for 6 years. We started to date in the summer of 1989. By the fall I was very sick and didn’t know what was going on. I had very similar symptoms as Ed. And as I got sicker Ed decided he couldn’t handle his MS still and so he couldn’t handle me being sick. He broke up with me in Feb of 1999. I got dx. with MS in fall of 1999. We didn’t stay in contact with each other. I was to devastated by the break up. We were apart for ten years. We went through many thing in our own personal lives those ten years. We ended up finding our way back to each other in 2009. I had gotten out of a very abusive marriage and went on my own. Six months later I called him and we started to talk and hang out a bit. I was in a place of losing my apartment and my health and my job. I was broke and sick. He needed a care giver and I needed a place to stay. We worked it out as a business relationship at first. Quickly we ended up romantically involved and soon engaged and the married by Oct. 2010. It was hard but we had so much in common we thought this is the perfect solution and I can do this even with my health failing. The first years were very hard but wonderful. We had found true love that we thought we never would. We had a home and our kids and stability things were good and we were able to do a lot together. The reason I am saying all this is to say. He changed my life, he basically saved my life. We learned to truly love and appreciate one another. He has been my greatest cheerleader and encourager through my journey with MS. He has been everything to me. I have been everything to him. It is not that way any more. It is very difficult. So much progression on both our parts. I am losing my husband and I have become 90% caregiver. I wanted to say all this first because I needed to put it some where and second. I never thought I would get to this place where. I am grieving all the time and finding days that I wish it would go faster and have my life back. I have a life with the most amazing man in the world, but yet I don’t any more. I am exhausted and lonely and depressed and so frustrated. These next few years if even that are going to be so very difficult. I am grateful for you AND THIS SITE. I HOPE IT WAS OK I SHARED AS MUCH AS I DID. I NEEDED TO PUT IT SOMEWHERE TODAY. I FELT I COULDNT GO ON IF I DIDNT. I GREIF IN MY CHEST WAS AWEFUL. sorry about the caps. I am thankful for this moment in time to help have a better day. Thank you and God bless! Marie Grace

  46. My Mother passed away on 20th Feb 2013. I had been her caregiver along with my Father and Hospice and my daughter. I was still working until the last two weeks of her life. I knew she was dying ( Lewy Body Dementia and Chronic Lymphocytic Leukemia.) I thought that since we were aware and we were able to say our goodbyes, and nothing left unsaid that it would be okay… We had already grieved, but when she died it hit me in the pit of my soul) I think that people think that when you have advance warning that it doesn’t hurt as much, you knew…But it does hurt so bad. I am now my Father’s caregiver with Hospice help..he and my Mom had been married for 55 years when she passed and he misses her so much…He has Amyloidosis and Heart Failure,,,he is not a candidate for Stem cells or Chemo , too far advance…I am taking this one day at a time, maybe one hour at a time….sometimes moment to moment. Thanks for writing on Anticipatory Grief…I will be looking for your book.

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    • Several months after our book came out Dr. Krahn called me. She said she hadn’t thought much about anticipatory grief before working on Smiling Through Your Tears. “Now I realize anticipatory grief walks into my office every day,” she said. Now I’m on anticipatory grief alert and it has helped me. Hope it will help you.

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  47. I never knew it had a name! I’m going through this with both of my parents. I’ve been trying to prepare myself for their deaths.Do alot of crying and going over scenarios in my head as to how it’s going to happen. i’m worn out.

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    • Anticipatory grief is exhausting. Try to eat right, get enough sleep, and exercise, even for only a few minutes a day. These actions may help.

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      • Thank you <3

  48. I feel so alone. I don’t know where “I” am in all this process. I am alone, but not alone. He is gone, but still here.

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    • The people we love are always part of us.

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  49. You can go through anticipatory grief if you have an addicted child. I know this from life experience.

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  50. I think you can experience this when you have a child who is an addict. Especially if they’ve had close calls with overdose.

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  51. Thank you for reading my article. Anticipatory grief, depending on its duration, may shorten post-death grief. This was true for me. After my mother died I felt “grieved out” and my post-death grief was less intense than I thought it would be and shorter. The same could happen to you.

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    • I think for me with my husband it will be the same. I will be all grieved out. I will be ok and I will live. Thank you

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  52. Wow its me,so hard to know i know what im doing ,telling myself im feeling sorry for myself or your just tired,people call me negative ,but i dont feel negative,surrounded by it constantly with the constant thought of what am i going to do,Lost me long ago ,frozein time when he went into a home,i have not been able to shake the feeling of grief im going to face.It controls me ,feeds my guilt,my actions and my moods and is always there to remind me of who i will never be again.
    That is why my nick is Bothfeet im going to need bothfeet to get me through this,i hate it ,
    I live in constant fear and worry,
    But when i read your post i was like a hug thank you,I now know why i cant move forwards and its not becasue im feeling sorry for myself,its cause im darn tired.
    Our brains are frozen in that state,and it is for a reason i believe,many many scenerios have gone through my head ,what will i do,rehearsed it a million times,some days i say im going with him,and other days i say i will become a work alcholic,other days i see myself slowly dying in a dark dirty corner somewhere in a massive depression,but when i asked what are you going to do when im asked when he dies,what i will do.I always smile and say i will be fine ive known for years this day would come and make light of it,But inside i think i go into shock when asked cause it triggers my flight to fight response up for hours after,maybe cause i had to lie,cause truthfully no one wants to hear the reality or truth of it all.
    For me if this journey in our life had a happy ending it would be i go before him ,lol is that not a good thing to say,well some days i dream that,cause then i could be his yup you guessed it his caregiver in heaven cause thats all i know.
    But it is in Gods hands how all this will end,so for today im so glad i read your post,made me feel okay to feel this way ,phew lol

    Reply
    • Hi there! You are saying and going through most of what I am . It is amazing when others say and write exactly what your going through and understand. I never thought in a million years that I would find a site that would work for me. I am sick and my husband is sick. I am his caregiver. I could never find any where for some one in my situation. I don’t need a support group for me and my MS. I need it for being the caregiver to my husband who has progressive MS. I have now found a place where I can go. I appreciate everyone’s transparency and vulnerability, Sending hugs from someone who truly understands

      Reply
    • I’m so glad you found the article helpful. Yes, it’s okay to feel the way you do. In fact, it’s normal.

      Reply
  53. Caregivers do what they do because they care so much.

    Reply
    • I agree with you! How much can you care for someone at your own expense though? I take it that its all the way as long as you can. I am a great caregiver but it has transitioned so much and its not just caregiving any more its everything.

      Reply
  54. and here i thought i came up with the name myself a number of years back! must have been a subliminal. i’ve been going through this since my parents hit their 70’s. mum is 81, dad is 86. both are mostly physically healthy, my dad tends to forget recent things. i also suspect that 13 years in nursing in long term care, specifically severe and end stage dementias, mainly Alzheimer’s, was also a culprit. it isn’t good to become so attached to your patients.

    Reply
  55. I just saw a quote, “We have no choice but to be strong”. I read this article and it is Johnny on the spot on how it was with Molanga when he was sick and trying to find out what was wrong with him. We were alone and by ourselves in dealing with his issues. HIS family was too busy to be bothered. For one, they could not understand why Molanga and I were still together after I divorced him. It took me years to be able to say – It wasn’t their business to understand. Our situation was between the both of us…especially since they were so busy with their lives. I thank God for the way he finally moved me out of this situation. God had his plan and he moved me away because he knew his plan and he knew how I would have been if I was around Molanga when he finally died. I took care of him for several years, trying to find what was wrong. I was so persistent on Molanga seeing doctors, making his appts, taking him to get tests done, getting him on disability. I had no idea how wore out I had gotten until I moved to MO to live with my son. It was like a huge boulder was lifted off of me….then I had this feeling of forboding, something was going to happen. It put some fear into me. I just couldn’t get rid of this feeling. I was worried about explosions, or devastation….Then it hit. I lost my brother to suicide, but 5mos before Rick died, Molanga died. I still can’t believe it wasn’t until 2 years after he died I only found out. I watched Molanga die before me. He was so depressed with his illness, his wanting to go back to Africa to see his mom. He just gave up. He kept asking God to take him from this earth. He was tired and so unhappy…sometimes I still cry….

    Reply
    • Tears are healing and you’re entitled to cry. After four of my family members died in 2007 I vowed to cry whenever I needed to and for as long as I needed to. You may do the same.

      Reply
  56. Thank you for writing this. I was a long term caregiver for my mom. The anticipation of not knowing almost drove me crazy. My kids thought I was psycho. I had to go to my Dr and get a med to help me. I was my moms only caregiver with the help of Hospice for the last year of her life. I love my mom dearly!! She was my best friend. She passed away January 22nd 2015 on her birthday with me and my son, daughter n law and grandson by her side. I cared for her at home.

    Reply
    • What a journey for you and your family! You were there for your mother when she needed you and that was a blessing for you both.

      Reply
  57. Yes, thank you. I spent five years going through this with my mother’s Alzheimer’s. I lost friend’s, probably a job (not entirely my fault), and it was exhausting and depressing. I thought I’d never be the same, but the actual death was a calming experience. I wish I’d known what I was going through.

    Reply
    • Many people don’t realize they are experiencing anticipatory grief and that’s why I wrote the article and why Dr. Krahn and I wrote Smiling Through Your Tears.

      Reply
  58. Thank you for reading my article. I wish you peace in the days to come.

    Reply
  59. I’m presently going through this with my dear mother. Mom has severe aortic stenosis and pulmonary fibrosis. We found out this past January that medically there is nothing more that can be done for Mom. I hate seeing her struggle to breathe & I occasionally find myself praying for the good Lord to take her peacefully. Thank you for explaining that anticipatory grief exists. Now I can better understand the many emotions I experience.

    Reply
  60. Thank you – the guilt, the life on hold, the wishing it were over and feeling somehow that you are marking time and being disloyal as if diminishing your love because you simply want it to end. You want your life back. In the last two years My parents have gone into care – my grandson was born and died on the same day. My husband has had a triple by pass (he was in hospital when our grandson died). He has previously had a double by pass. My dad died from Lewy Body Disease in January. I have sold their home; and I am exhausted. Mum remains in care COPD and mild dementia. I sometimes feel like the evil witch because I want my life back. Thank you again for helping me make sense of my feelings.

    Reply
    • I’m so glad my article was helpful.

      Reply
  61. I was my mothers care giver for the last two and a half years of her life , Sooo I went through a lot of this kind of grief. I knew that I was crying and grieving because I was helplessly having to watch the strongest person i’d ever known rapidly decline. But there was also guilt. It felt, at times, as if I was hoping for the end. I loved my mother dearly and did not want her to die, but sometimes it felt like I did, but I have realized since her passing in November 2014 that I was wanting her pain and sickness to stop. Anticipatory grief is a very fitting name for grief before the actual passing of a one….

    Reply
    • I’m not a grief counselor but, from my perspective, your feelings were normal.

      Reply
  62. Would love to get a copy of your book for our lending library at Palliative Manitoba.

    Reply
    • The book is available from Amazon.

      Reply
      • Thank you so much. Knowing it is real & I am not going crazy has helped so much! Ordering book today!

  63. I neveR knew what I was feeling or experiencing. You’ve put a name to it. Thank you

    Reply
    • Interestingly, a person who came to a workshop I gave about anticipator grief said the same thing.

      Reply

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