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AmazingGrace Asked February 2012

The social worker with Hospice tells me that I am suffering from anticipatory grief. How do I cope?

Has anyone experienced this? At times I am extremely emotional about thinking about my mom dying. I get very depressed and can't even let myself think about it. But, at other times I have it together pretty well and I realize that her quality of life is gone and she will be better off. Being a caregiver first for my dad who died with a brain tumor and now for my mom, is by far the hardest thing I have ever experienced. God bless all of you, who like me, are doing your best.

TipWillow Feb 2012
Like each of you I am experiencing anticipatory grief. My Mom had a seizure a month ago and has suffered some brain damage according to her doctor, she's 80 and was so viable and full of life. It breaks my heart to know the end is coming. Each of your responses have helped me. You all are in my thoughts and prayers as we go through this challenging time.

lizard41 Feb 2012
I also have experienced this kind of grief. But I am on the other side of it now since I just lost my mom on Dec 31st. Grief is diblitating. My mom and I were so close and a week before her death she told me she didn't want to die.( She fell and hit her head). When I think of her and not my own feelings, it helps. When she was living I pulled from my strength deep inside and made her days good and tryed to find happiness in each day. Now that she is gone, I know she is not suffering anymore, she is happy and at peace. I will suffer with my grief forever as long as I know she is at peace. I miss her so, every moment of every day. But our mothers legacy will live thru us. God bless you and your mom. And I hope you find alittle comfort in knowing you are not alone. Hugs, hugs hugs, Beth

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jeanbird Feb 2012
Thanks for your thoughts. I am going through this with my husband but I never thought of things in quite this way. Things are getting harder but I will try what you do.

timmyk48 Feb 2012
How do I cope with these feelings....
I talk to God alot and then just keep going. This is my place in my life right now, caring for my parents. Try to do little extra things to make there lives special, which also makes me happy. We are all going to die, but we don't watch each day go by like it's our last. Which is what we do when we view our parents like that. Have to just look at each moment as what we have now and make the most of it. It is hard to watch their decline, but I have to remember how lucky they are to have me right there for them. I look out for their every need and want and feel contented inside to see them benefit. Once in awhile Dad will be lucid enough to whisper a little thank you of some kind...or give a little smile and squeeze my hand. Precious moments.

Maure Feb 2012
I've often wondered the name of the feeilngs I have {anticipatory grief} and this nails it. Mom is 83, and had beat out three different types of cancer. She said she doesn't feel ready to die yet, so off to surgery she went for bladder cancer and doesn't remember anything about 2010.
Currently lives in assisted living apts. but has told me recently that she feels like she's 's losing her mind, she's on an anti-dep, vit d, iron, one other med.
Her spirits have picked up and she'll come to visit if I call and invite her.
This waiting for her to die *as I imgaine in my mind drives me crazy.

AND on the other side of "THAT" coin, I have the same feeilngs about my
husband. He's taking Jumaira and it has so man many side effects and it's deadly just as any another medication would have but these are a diferent type of drug for both types of arthritis.
His health is already comprimised with having only his right arm, (due to work accident) vision, sometimes one eye will cross over to see something else, thus maaking there seem "two" of something in the highway and the list goes on. I have no siblings, our kids have all moved away from this small town due to store closings when walmart moved in. Just a sad sad case of some depression, a lot of anxiety and I'm not well myself. A lot to deal with. Thanks for listening.

AmazingGrace Feb 2012
Thank you everyone for your very helpful comments. Sorry, waddle1, I didn't give enough specifics about my situation. My mother will be 86 in March and has had Alzheimer's disease since her early 70's. She is now in the advanced stages and is just like an infant. My dad died from a brain tumor in 2008 and I have had her in my home taking care of her since then. I am an only child and my mother and I have always been extremely close.

waddle1 Feb 2012
Yes, a sudden, shocking death is the worse. I've experienced both as well. AmazingGrace hasn't shared with us her age, her mom's age or mother's health. Not sure if there is something going on currently with her mother to bring-on these worries about death or if she's thinking perhaps far into the future.

NancyH Feb 2012
I'd still rather be doing the anticipation of someone I love dying, than to have it happen suddenly with no warning. Been there, done both.

waddle1 Feb 2012
I lost my mother in April. It wasn't expected, but at the same time it wasn't a shock. She was 84 with early dementia and declining mobility. While we can not give you a "one size fits all" response or guidance, I will say, looking back on my situation, that I think "anticipatory grief" is a way we, the family and friends of those whose life is declining, is a way for us to prepare for the loss. I handled my mother's death better than I had imagined. I had thought about it...feared it for decades. We are all mortal. We know it's coming. As the years go by and we see our parents decline, those thoughts of their deaths, and what we will do when it happens, become more intense. It's human nature. I think part of the anxiety is...fear of the unknown. My experience showed me that...we can not imagine or plan how it will be in every detail. Worrying about it gives you sleepless nights and anxiety, but will not prevent it from happening or "fix it"

Just know that it is natural what you are feeling. You don't realize it now, but I think your feelings and thoughts, this turmoil in your head, will help you deal with the grief in the future. While this may sound cold, I think it can be helpful for you as well. Not immediately upon my mother's death, but within 24 hours, I actually felt a relief...as though a weight had been lifted from my shoulders. A weight of decades of worry and anticipation of what I knew was coming. I knew the shoe was going to drop. Now that it had, that worry, fear, anticipation of gloom and the unknown, were gone.

Many years ago I heard an actress on a TV talk-show give a phrase/quote which she said she had used to help her face tough times. I have remembered it and have called it up in my mind on many occasions to bring me courage and strength and help me take some tough steps. Perhaps it will help you, as well.

"Fear knocked at the door. I answered it, and there was nothing there."

xmart Feb 2012
New term to me but I recognize the behavior. Good point PDdaughter to count time forward from the diagnosis date. My dad had lung cancer when I was pregnant with Son. Dad saw his life as over and wanted to give up. Now Son is 25 years old and I tell my dad he lived another whole lifetime to be able to be with Son from infancy to manhood. And Son's life was also richer for having had his grandfather as a role model.

jeanbird Feb 2012
Sometimes I realize that I have had anticipatory grief all my married life. As a military wife everytime my husband 'left on a trip' I felt that this could be our last goodbye. I was lucky and he is now home for good and suffers from advanced alzheimers. Guess this trip will be it for us, but I am grateful for our years together and wouldn't trade them for the world. JEANBIRD

kuli Feb 2012
I too went through anticipatory grief. That's what I called it at least - watching the slow decline knowing an end was coming. Thought I had worked through so much of it that when dad passed, it would be easier. Not so - so just prepare yourself. My suggestion is to have hospice help you have conversations with your mom about your feelings and hers. That's what I wish I would have done. It might help you to understand this from your mom's perspective. My dad tried to talk to me about some of this but I couldn't deal with it because I wanted so much to deny that the end was coming. I know he had many conversations with the hospice staff and they all assured me that he was quite open and honest about death. Regardless, anticipatory or after the fact, grief hurts and as RLP said, lean on us here to offer encouragement and a sympathetic ear when you need it. Hugs ~ Kuli

ShadowChild1 Feb 2012
What you are going through is normal and to be expected although heartbreaking. Is the hospice helping YOU, though? The private hospice we used looked after the entire family unit, not just my father. Please lean on us as you go through this process.

sandfox Feb 2012
I am going through this to, to a degree. Every my time Mother is in the hospital, we (family) always consider that it's the last time, and I prepare myself if it does happen. But, my Mother is such a fighter--"She said she isn't ready to die yet!"--that she recovers. So, I guess I can say that I've had practice. But, that doesnt make it easier. I react with anxiety and physical symptoms (very somatice brat). I combat this by thinking about how I know what she is going to. I had a near death experience two or three times, and I know where we are all going. It's ---beyond word or expression --but it's so wonderful. My Mom is going there too, so why stay in grief over it when I know where she's going? It's the sweetest place ever to be; full of so much love energy that you can't hardly stand it! But, I'm still sitting here in tears thinking about it. It's a mixed bag I guess. Mostly, I think the loss is more about the condition we'll be left in after they're gone, not so much that they are gone to a wonderful place. Like funerals are for the living, not for the dead.

golfqueen1111 Feb 2012
I didn't realize that I too have anticipatory grief. Somehow I can't face the fact that my mom will die eventually. She is 95 now, legally blind, hard of hearing, difficulty swallowing and has dementia. Somedays she is very sharp and somedays she gives her aide a really hard time about eating, showering, denture cleaning etc. The aide calls me and gives me a rundown on how she is behaving. She often fights using the oxygen and I tell her she needs it to feed her brain.
I am also afraid that if she lives for many years from now she won't have the money to pay and aide. Besides paying all her bills I am constantly worrying about what will happen next.

PDdaughter Feb 2012
Like you, I suffer from so-called anticipatory grief. I am alone on my journey and have come up with a few things that help me manage my grief. In short, I keep a journal for my emotional release and exercise when time permits for physical well-being, negative energy release, and endorphin production. I also keep a little notebook in which I write three blessings at the end of each day (the time of day when I do most of my grieving) that help me stay focused on the positives. Then, too, there's nothing wrong with a good, cleansing cry every now and then! The way I see it, we're better off in the long-run if we understand and accept our feelings and, by processing them now rather than bottling them up or pushing them deep down within ourselves, we will be better able to cope with the loss/losses that lie ahead.

Something else that I sometimes do to help me when little consoles me is to think of the day on which my mother was diagnosed with Parkinson's Disease as the day when I could have lost my mother to a fatal heart attack or car accident, which makes every day since that day a blessing in and of itself because she is still alive and I still have her in my life. I do the same "mind exercise" with my father whom I almost lost to a severe pneumonia after heart surgery three years ago. I actively work on keeping this in mind to relieve my current grief when it becomes too much at times and to, hopefully, help ease the "actual" grieving that lies ahead if I outlive my parents.

I sincerely hope that, in addition to finding the tools that help you through your difficult time, your family is supportive to you and understanding of your grief and that you have at least a friend or two to comfort you as well. I wish you well and send you a hug across the miles.

BridgetW Feb 2012
WHAT IS ANTICIPATORY GRIEF?




By Beth Erickson, Ph.D.

Anticipatory grief is what happens when you know there will be a loss, but it has not yet occurred. This is what happens when a loved one is dying, and both the patient and their loved ones have time to prepare. Anticipatory grief is both the easiest and the hardest kind of grief to experience. It is marked by “stop and go” signals. With these losses, the handwriting is on the wall... but it doesn’t make coping with it easier.


Hope this helps..!!
Blessings,
Bridget

timmyk48 Feb 2012
"anticipatory grief"...that's a very good way of saying what a caregiver feels.
That is exactly what I feel also.
Thanks for those words and God Bless you!

CindyLou Feb 2012
I, too, suffer from anticipatory grief at times; more so when my mother's health is in a decline. I found the best help with an online article about hospice. Whenever I start feeling down about my mom, I pull it out and reread it. And as difficult as this sounds, sometimes I just have to separate 'myself' and look at the big picture as if I were on the outside looking in. My mom, too, is my last surviving parent so that fact weighs in emotionally as well. There is a lot of give and take, ups and downs, to caregiving. Caring for my mom is providing many cherished moments that will sustain me in the future.

angelaleigh76 Feb 2012
I never thought I would feel that way but I do. I know my grandmother would not want to live like this but what can you do....just hang in there and hope she lives comfortable until her last breathe. Hang in there....your not alone by any means!

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