Young Widow Forum

Specific Situations => Extreme Caregiving => Topic started by: Shelby on March 09, 2015, 07:45:15 AM

Title: Anticipatory Grieving
Post by: Shelby on March 09, 2015, 07:45:15 AM
This phrase for those of us whose spouses had a terminal prognosis gets thrown around a lot.  Do you believe in grieving in advance?  Did you do some anticipatory grieving and did it hurt you or help you?

I did do some anticipatory grieving, mostly because everything that made Rich who he was was gone long before he died. In my case, it helped through the early days, those shocky, I-can't-believe-this-actually-happened days, but it caught up to me at about month 5 and I quickly spiraled downhill.

It took a long time to recover from that spiral and it was made harder by all the people who thought I should have been prepared.  One-on-one grief counseling and then, much later, GriefShare helped a lot.

How about you guys?
Title: Re: Anticipatory Grieving
Post by: robunknown on March 09, 2015, 09:15:13 AM
When my wife was first diagnosed with stage 4 right off the bat, I thought she only had months (they never gave its a prognosis). Looking at different studies told me she may have 18 months. I think i can say i was utterly depressed and "pre-grieving" . Then 18 months, came and went. I would pre-grieve every now and then. It wasn't until about 60 months that we were told to "get your affairs in order", and it was clear they meant it. I pre-grieved for about a month solid, then we just continued to push forward. She passed at 67 months. I think pre-grieving helped me somewhat, i know, knowing that her time was limited, kept me from doing small things i would regret (like not complaining about doing stuff for her). That has helped me now. Especially when my brain tries to find something i regret (i don't know why my brain tries to do this).
I think my grieving now has an extra element that complicates things. I find I'm almost mourning two people, her before the diagnosis happened, and who she was Before  she died.
Title: Re: Anticipatory Grieving
Post by: Shelby on March 09, 2015, 12:46:48 PM
I find I'm almost mourning two people, her before the diagnosis happened, and who she was Before  she died.

I get that. I grieve the Rich that I fell in love with and married and I grieve the Rich who would have been if he'd been allowed to grow older in a "normal" way. Kind of like grieving the life we had before and also grieving the life we might have had. 
Title: Re: Anticipatory Grieving
Post by: lcoxwell on March 09, 2015, 08:01:55 PM
I cannot speak for others, but I don't know that I necessarily believe in grieving in advance.  Of course, I married my Kenneth knowing full well that he was dying and that the prognosis was that he likely wouldn't live through another year (that was 13 years before he actually died).  I guess I didn't walk into my marriage with the expectation that we would be able to grow old together, so there are things I cannot speak to. 

I think there are things that we grieve along the way.  We watched our spouses slowly fading away in front of our eyes, and we lost our spouses, piece by piece.  So for some of us, we may have grieved the loss of the man/woman we married long before their physical death.  No matter how much we may think we are prepared, though, and no matter how much we may have grieved the life we thought we would have had, there is nothing that can truly prepare us for the finality of the actual loss.  There are no short cuts to the grieving process.

I also agree with bear.  As long as our spouse was alive, "there was still hope."  It might not have been much hope, but it was there, nonetheless.  My Kenneth had beaten the odds so many times, I think a part of me started to actually believe he might continue to hold on for a long time to come, until he reached the point where he decided, "no more".  Once he made that decision, things happened fast, and there was no time for anticipatory grieving, because we were too busy trying to make the most of our last few days together.
Title: Re: Anticipatory Grieving
Post by: anniegirl on March 10, 2015, 10:58:51 AM
It's a real thing but I don't think it's a given in situations when a illness is terminal.

As Barney points out, correctly, where there is life there is hope, but not all illnesses offer much of either.

By the time my husband was diagnosed, he was suffering from moderate dementia. His illness had defied the doctors ability to pinpoint for so long, there was nothing that could be done except wait for it to run its course.

And it was a long course. Three years. That's a long time when you are living with someone who isn't the same person and really doesn't know who you are anymore. Has forgotten the name of the child you share.

So for me, pre-grief? Oh yeah. Whenever things slowed down between full-time job, raising a toddler on my own and taking care of a man I didn't know and who didn't know me - I grieved. Hard.

I grieved the life that was gone and the future that wouldn't be because all there that was left was a limbo like now.

I would guess it is very different when your spouse is still your spouse and your marriage is still your marriage, but in situations like mine, where everything is gone but the day in and out of care giving,  anticipatory grief is very common.

Title: Re: Anticipatory Grieving
Post by: Shelby on March 10, 2015, 01:04:04 PM
I am so grateful to all of you for sharing your thoughts.
Title: Re: Anticipatory Grieving
Post by: littlebirdie on March 17, 2015, 07:00:58 AM
I imagine it's different for everyone. When Brent was diagnosed he was given a 5% chance of survival and we expected him to live six months at the most. So I think that in a sense it was true for me, in that I knew there was no hope right from the beginning and I had the opportunity to begin to accept what was going to be; however, I don't think that knowing your spouse is going to die can in any way prepare you for the reality of being widowed. For me, knowing absolutely that he would die and learning to cope with the reality of my life after his death were two completely different things.
Title: Re: Anticipatory Grieving
Post by: Shelby on March 18, 2015, 07:19:30 AM
For me, knowing absolutely that he would die and learning to cope with the reality of my life after his death were two completely different things.
Yes. This.
Title: Re: Anticipatory Grieving
Post by: ManutesGirl on March 18, 2015, 07:24:56 PM
Yes,  I grieved so much along the way but like Little Birdie said I accepted and was prepared that he was going to die but I was not prepared to live after he died.  That was somewhat shocking to me.
Title: Re: Anticipatory Grieving
Post by: Kamcho on March 18, 2015, 09:24:38 PM
I know I did. I would go home to shower, and would scream and cry.

Maybe a better way of putting it is that I grieved what my baby was going through, but it didn't prepare me for the finality of him actually being gone.

It was a hard road. My thoughts are with anyone struggling with this.
Title: Re: Anticipatory Grieving
Post by: patriciad on April 04, 2015, 09:22:14 AM
I knew from the moment of diagnosis that Billy wouldn't make it.  He had high hopes of beating the odds . I had to support his decision and was there by his side for all of the treatments.  But I knew that this was going to end quickly and badly.

Sometimes at night I would hear him get up-in those first couple of months when he could actually do that.  I would hear him moan and then search for his pain meds by the light of the little lamp left on all night.  I would say a silent prayer to make this an easy passing for him.  Let him go sooner rather than later -if it could just be less painful for him.

And then there were moments when I would see him sitting up in the recliner in our bedroom, hooked up to his oxygen and totally dependent on me for everything-and I would think"Please let him stay.  I will take care of him forever if you just let him stay"

So I was ready in the sense that I knew he wasn't going to be here for long.  And I did whisper to him on that last day that it was okay to go(even though those words were the furthest thing from the truth).  But all of that time together never prepared me for a life without him here.  I don't think anything prepares you for that.

Pat
Title: Re: Anticipatory Grieving
Post by: VioletRoses on April 04, 2015, 11:03:04 AM
Dave had heart issues and he had a simple pacemaker. The doctors said he couldn't be operated on until his risk level changed. We would wait for a heart attack and when it happened if he survived we would try an experimental procedure that may help him. In early March, seven years ago, I heard him fall in the middle of the night. I did CPR until the aid car arrived. They shocked him twice and then the true roller coaster ride began. He got the special procedure at the U of WA. It was successful. We began to recover. He was himself again after a time then he would slow down and we would go back to the hospital to get another stent or angioplasty. He was still inoperable but we always had hope. He ended up with nine stents in his heart over the next five years. We had the aid car here picking him up over 30 times.

We had numerous times when the doctors told us to call the family because he wouldn't make it thru the night. We were blessed with many miracles. Then he passed. I had five years of bonus time. It was not easy but it gave us time to plan. He planned for his death and made as many arrangement to take care of us as he possibly could. I grieved for our lost life while cherishing the moments we still had. We discussed, way too much, how I would live after he was gone. I cared for him at home in hospice for twelve weeks. We had our finances in order, funeral insurance and he talked to his friends and he selected the speakers and music for his funeral. I thought I was ready. I didn't want it to happen but it wasn't up to me. I thought I had so much time to prepare it was going to be ok.

I said I was ready for him to be at peace but in truth I was not ready for him to be gone. The idea of death and the reality of it are two entirely different things. The sudden silence was too much to bear. Our home had been constantly filled with family, friends and laughter and then nothing. I do think some of the anticipatory grieving helped my process but it still happened again at full strength when death actually occurred.
Title: Re: Anticipatory Grieving
Post by: lcoxwell on April 04, 2015, 03:33:02 PM
I knew from the moment of diagnosis that Billy wouldn't make it.  He had high hopes of beating the odds . I had to support his decision and was there by his side for all of the treatments.  But I knew that this was going to end quickly and badly.

Sometimes at night I would hear him get up-in those first couple of months when he could actually do that.  I would hear him moan and then search for his pain meds by the light of the little lamp left on all night.  I would say a silent prayer to make this an easy passing for him.  Let him go sooner rather than later -if it could just be less painful for him.

And then there were moments when I would see him sitting up in the recliner in our bedroom, hooked up to his oxygen and totally dependent on me for everything-and I would think"Please let him stay.  I will take care of him forever if you just let him stay"

So I was ready in the sense that I knew he wasn't going to be here for long.  And I did whisper to him on that last day that it was okay to go(even though those words were the furthest thing from the truth).  But all of that time together never prepared me for a life without him here.  I don't think anything prepares you for that.

Pat

I can relate to this so very much.  I can remember sitting and watching my Kenneth, who was in so much pain, and I would pray that God would either ease his pain or take him quickly, so he wouldn't have to suffer so very much.  Then, I would sit in the ICU, and pray that God would let him hold on a while longer, so that I could have more time with him.  One of my very first thoughts, when he died, was that I wasn't ready.
Title: Re: Anticipatory Grieving
Post by: anniegirl on April 04, 2015, 04:55:33 PM
I think the one thing that makes people doubt the whole idea of anticipatory grief is they think it is a shortcut that will speed up the healing timeline or that it's like getting ready for a 5k or triathlon. Grieving in advance makes being widowed not so bad.

That's not really what it is at all.

People who've been suddenly widowed are like women who are suddenly thrust into menopause by illness or surgery. It's like "boom"! You are here!

When you've been a caretaker and you see death coming, you aren't yanked out of time and put somewhere else. You knew and you thought about it (even if it was just a little), the life after.

It doesn't make it suck less and depending on how much caregiving wore you done, it doesn't mean you will "recover" faster.

And it matters whether or not you and your spouse were still emotionally connected right up to or close to the end. Losing the connection and being "just you" at some point in the care-taking, being forced to be single but not really, changes things in the aftermath too.

I think there is more guilt in the latter because there is a sense of relief, freedom and an "at last life can move forward again" rather than hang in a holding pattern.

When someone dies, it's crappy. The anticipation doesn't make that go away. And it's okay to say, "yeah, I knew" and also, "I was relieved". Both are valid emotions that in no way make you a horrible person or diminish the love you had for the deceased.

Title: Re: Anticipatory Grieving
Post by: IronBear on April 07, 2015, 11:57:14 PM
I am mostly just a superstitious irish-american who thinks that God would have an excuse to take Laurie sooner if I did any of that "Anticipatory Grieving" stuff. I fucking hated the doctor who told me Laurie would die and would probably have decked her if she wasn't a gal. I saw fire.
Title: Re: Anticipatory Grieving
Post by: luvmy2babies on April 08, 2015, 09:21:48 AM
I think I did on occasion and it likely got me through the first part of the time on my own.  2nd year though kicked my behind every which way possible though and as my life continues to be maneuvered by this thing called widowhood I go through different phases.  I?m mad right now 5 years later because the illness controlled my life then and sometimes it still feels like his death has me on puppet strings.

But at the time I know I wasn?t as shocked as everyone else.  My shock was when it happened, not that it actually happened.  I was the only one who actually knew how sick he was.  He could appear quite normal if you didn?t see him often.  He wasn?t technically terminal either.  I had an ?at this rate, he?ll likely be gone in this amount of time? conversation with the doctor.  He outlived that by nearly 3 years.  He could have died many times if we just didn?t go for medical help.  I knew he was tired and his spirit was breaking; so at one point, I told him if he decided he?d had enough at some point, I wouldn?t fight him.  He had reached that point in 2006 and I threw a fit begging him not to leave us.  While he accomplished a lot in the time he was here after that, he also suffered a lot.

Not too long after that though I got pregnant. I had wanted a 2nd child; but had given up on it.  Then the one night in nearly 2 years we attempt intimacy I got pregnant. I  think once we had our son I tried to convince myself he wouldn?t leave us.  I think he tried to do the same.  He told me when the baby was 6 weeks old (on our 10 anniversary) he was going to do better listening and doing what the doctors told him to do.  He was dead less than three weeks after that conversation.  Still, he had had much worse episodes and other times where I felt this may be it.  I would not have predicted his passing happening when it did.  But his illness had traumatic frightening episodes and when he passed, there wasn?t any of that.  His heart just stopped during a nap.  The children and I weren?t even home.  I came home with them and went upstairs and found him while they were downstairs. 

It wasn?t until the coroner was there removing him from the home that I remembered I had dreamt of it.  I had a dream I was widowed with my little girl and an infant son and we were in a new small home and ?okay?.  I dismissed the dream at the time because I hadn?t even gotten pregnant and we had no activity that could result in a pregnancy.  Even when I got pregnant and found out it was a boy I didn?t remember the dream.  So I saw my life without him in advance subconsciously and at times I as much as I tried to avoid it, pictured it while I was awake too.  Some of it matched up; but a lot didn?t.  The new small home happened.  It just happened this year and not the way I thought it would at all.

I will say that I didn?t anticipate and couldn?t anticipate my reaction to his actual death.  There isn?t much crying.  I cried a lot before he died.  A whole lot, especially in the shower...and screamed too.  Now, I do cry; but more I just tend to become unproductive and very tired.  And I didn?t anticipate being so angry. 
Title: Re: Anticipatory Grieving
Post by: Mel4072 on April 29, 2015, 06:40:42 PM
In a way, maybe it helped. The shock of diagnosis and treatment was better having him there. I think it did prepare me to be stronger after he passed. I didn't have the anger after his death but I did before. And I would remind myself that he wasn't dead yet, I had nothing to be angry about. I learned how to control my emotions much better during his sickness.
I agree with the theory of anticipatory grief. We are each different and grieve differently so, while I can see some of the benefits of it, I understand that it doesn't work that way for everyone.
I've been able to say goodbye to 2 of my friends since then, knowing that I could manage seeing them dying.
Title: Re: Anticipatory Grieving
Post by: robunknown on April 30, 2015, 08:52:22 AM
I think you hit on something Mel. Maybe "anticipatory grieving" has nothing to do with "grieving" but is really just learning how to control your emotions, and in some cases with extreme caregiving, learning how to manage a household, and kids on your own before the significant other passes. These skills I think have made it easier for me to grieve.
Title: Re: Anticipatory Grieving
Post by: IronBear on May 21, 2015, 01:54:07 PM
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Title: Re: Anticipatory Grieving
Post by: lcoxwell on May 22, 2015, 12:52:34 PM
Laurie should have died in 1997 so when the cancer came back in 2004, I thought she'd beat it again. Maybe "anticipatory grieving" would have helped better than denial?

I so get this! My Kenneth was supposed to die 12-13 years before he actually did. He beat the odds so many times, I had started joking he would probably outlive all of us. And then, he reached a point where he got tired of fighting and ran out of extra chances, and I had no time for "anticipatory grieving". Denial served me well for 13 years, though.
Title: Re: Anticipatory Grieving
Post by: Dahlia on June 16, 2015, 10:13:06 AM
I did a lot of anticipatory grieving for my Scott. We both did. We knew it was ending, and we were both horrified and heart broken.

When it finally happened, I learned though that all of the grieving prepared me not even a little bit for the life after.

It's something I don't understand. My whole world and my sense of self changed in a minute. After all of the preparation, all of the thought, all of the emotions, I still had this radical shift in everything I thought I knew to be true. I still felt like I had suddenly discovered that the world was "grisly, fierce and appalling" (to quote Douglas Mawson). I had prepared myself to grieve in a world I understood and as a person I knew, but that was gone and my grief is chaotic.

Title: Re: Anticipatory Grieving
Post by: lovelorne on June 25, 2016, 05:33:13 PM
Do you believe in grieving in advance?

I thought I did until he died.  No way was I prepared for that.  11 months after being diagnosed with stage 4 colon cancer, he passed.  It was like a dream.  The constant work of caregiving was over, but the real nightmare had just begun.
Title: Re: Anticipatory Grieving
Post by: TooSoon on June 27, 2016, 08:17:42 AM
My husband lived for two years with a terminal diagnosis and it was not pretty (brain cancer - the brain is a much more dynamic organ than I had ever realized...).  When he died, people - and maybe even myself until I couldn't deny it any longer - thought I'd be ready, thought I'd had time to prepare.  Some people even said, "You must be so relieved."  Um, sadly, no.  I mean, I was relieved he wasn't suffering any longer but that's where relief began and ended.  However, what I will say is that much of my grieving has been related to the loss of my own identity in caregiving.  My whole life was consumed by the illness for two years - when I no longer had that - as fucked up as it sounds - to structure my life around, I was lost.  I mean, really, really lost.  It is better now but it is still there - I think it might always be.  Sending support. 
Title: Re: Anticipatory Grieving
Post by: Wheelerswife on June 27, 2016, 09:01:01 AM
Do you believe in grieving in advance?

I thought I did until he died.  No way was I prepared for that.  11 months after being diagnosed with stage 4 colon cancer, he passed.  It was like a dream.  The constant work of caregiving was over, but the real nightmare had just begun.

I do believe that some of us grieve in advance of death.  In my case, I married my first husband knowing that he had a progressive, genetic neuromuscular disease that could have killed him at any time.  His muscles were so weak that he had a completely ineffective cough and at some point in his life, barring anything unforeseen, he was destined to die of respiratory complications of some illness.  He outlived his original prognosis (death by age 5) and lived into his 54th year.  I knew all along that I could lose him at any time, and we were vigilant in addressing things like colds.

I think in many ways, we both grieved his gradual loss of strength and function.  The last 16 months of his life were very fragile, as he had become quite critically ill and almost died.  We had several talks about death and end-of-life throughout our relationship, including in our first few months of dating.

His death came fairly suddenly...he was at his very weak baseline, needing a ventilator at night, when he came down with a cold and deteriorated quickly.  He declined aggressive treatment.  By this point, his death was predictable.  His life was no longer any fun for him.  He was completely dependent and he was always afraid.

But as I have said before, I was very well prepared for him to die.  But...I was not prepared for him to be dead.  I went home from the hospital after he died and sat on my bed and the thought that came to me was, "The day I have dreaded for over 18 years has arrived."  I could not have anticipated the deep sorrow I felt after he was gone.

Sigh.

Maureen
Title: Re: Anticipatory Grieving
Post by: canadiangirl on June 28, 2016, 05:46:40 AM
Hi lovelorne, no not really, in the sense that I don't believe grief is a finite pool of sadness that you can dip into beforehand and decrease the overall volume, somehow lessening the impact after the person's death.  My DH died after 4.5 years battling cancer.  He never ever accepted that the end was coming and fought to the very end, so that would have affected any "anticipatory" grief.  ITA with Wheelerswife that you can prepare yourself somewhat for the end, but you cannot prepare for them being dead.  I never once felt any relief after he was dead, and the grief was raw on top of the exhaustion of caregiving.  So if there had ever been any anticipatory grieving, it sure did not ease the way, much as Dahlia has put it.   
Title: Re: Anticipatory Grieving
Post by: Frederick on August 17, 2016, 05:29:02 PM
I'd compare anticipatory grief to very slowly and painfully peeling off a bandage. Just how it felt to me, anyway.
Title: Re: Anticipatory Grieving
Post by: Shelby on August 24, 2016, 10:20:20 AM
Maureen, so much THIS

Quote
But as I have said before, I was very well prepared for him to die.  But...I was not prepared for him to be dead.  I went home from the hospital after he died and sat on my bed and the thought that came to me was, "The day I have dreaded for over 18 years has arrived."  I could not have anticipated the deep sorrow I felt after he was gone.

Some days I wake up and still expect to see him which is weird since I've remarried.
Title: Re: Anticipatory Grieving
Post by: JustLola on October 12, 2016, 02:07:04 AM
I definitely did some pre-grieving. My first huge breakdown was about 3 1/2 months before he passed away. One night I asked him a question about the dinner I was making. He thought and then he said "Here's what you do" with a facial expression I'd seen a million times. It hit me that soon I would never see it again and would never have his help in the kitchen.

Later, when we knew for sure the chemo wasn't working and it was only a matter of time, I told myself the reality was that life was going to be hard for a long time. Somehow that took the pressure off later.

It helped me to steel myself for the pain to come, and to put me in the mindset of making his last days as happy and comfortable as possible. It also allowed me to put things in motion while I was still thinking fairly clearly: I reached out to my lieutenants and gave them names and numbers of people I wanted them each to contact when the time came. When the time did come, I just said "Go" and they did the rest. In turn, I could concentrate better on my children and my mother-in-law.
Title: Re: Anticipatory Grieving
Post by: Bear Shannon on February 07, 2017, 11:09:33 PM
I was much more into denial. Laurie was probably in the ground three or four years before I truly accepted her death.
Title: Re: Anticipatory Grieving
Post by: Adley on February 07, 2017, 11:49:02 PM
Thanks for bringing this back up Bear. I didn't accept it one bit until the last morning. I'd never seen a problem we couldn't whip. Someone else said this well on another thread-  processed the death intellectually almost immediately, but over two years in the emotional processing kicked in.
  Thats when I found you all, at two and a half years. I realized if I didn't get some help, my heart would be the next unconquerable enemy. And you all have been wonderful help.
Title: Re: Anticipatory Grieving
Post by: HCE on March 26, 2017, 11:13:22 PM
My wife was diagnosed with primary cancer over eleven years ago, and with terminal cancer eight years ago.

That's a lot of time to assimilate, at least intellectually, what was going to happen. The moment her terminal prognosis was confirmed, that was when we knew she would die young, and there's no question I started grieving at that moment. I remember sitting in hospital corridors with her mother crying and hugging for hours on end. That was when I started to live with the fact that she and I would never grow old together.

After that horrible time, when her prognosis was very poor, things unexpectedly started to improve. My wife defied the doctors' expectations and went into remission for nearly seven years, despite the fact that the cancer had come back very aggressively. Over that period, while we knew it would end badly, we achieved such a degree of stability and normality that we would go for weeks or months at a time without thinking directly about what was going to happen. I don't wish to minimize how hard it was for her to live in the face of an early death and deal with physical hardship and discomfort, but she refused to waste her time worrying when she didn't have to. Similarly, while I knew I'd be widowed young, only once or twice did I confront this reality head-on, in all its horror. We more or less decided not to waste our time on misery when we didn't have to. After all, the misery would take care of itself. I think this was the right thing to do, and I don't regret it for one moment.

We made the most of every hour, and said all the things we needed to say.

My wife died in November, and it was not unexpected, but it's only in the last several weeks that the reality of her loss is starting to hit home. I think now that I overestimated the extent to which I had processed and accepted what had happened. I thought I was OK, but now I think I've been hiding from what it means to be without her. I just miss her so much.
Title: Re: Anticipatory Grieving
Post by: Bunny on November 04, 2017, 10:52:03 AM
I was only a caretaker for two years. i could not admit that my husband was actually going to die until he slipped into a coma days before his death. I remember hiding from everyone in the bathroom, trying to calm myself down by making plans on how I was going to deal with his absence. That was shot to hell pretty quickly. Widowhood was so much harder than my imagination could possibly conjure.