What constitutes ‘acceptance’?

Jeff86

We all are familiar with Elizabeth Kubler-Ross’s five-stage model for grieving (denial, anger, bargaining, depression, acceptance).  And we know from the work of psychologists like Pauline Boss that we caregivers for PWD’s experience ‘ambiguous loss,’ which entails grieving when our LO is still alive.

I have started reading David Kessler’s new book, Finding Meaning:  The Sixth Stage of Grief.  Kessler was mentored by Kubler-Ross and has done a lot of work in the field of grieving.

It has caused me to reflect on where I am in this process.  I think of myself as a pragmatic, realistic person with a strong bias to problem-solving.  As this relates to my DW’s AD, I don’t think I’ve ever denied the sad reality of AD.  I wanted my DW tested, I wanted to know what was wrong, and what if anything could be done about it.  I also don’t think I’ve experienced anger about it—it’s profoundly regrettable, but it’s no one’s fault.  It’s a disease, and my DW had an unlucky lottery ticket.  I’m not angry at medicine for its inability so far to develop effective treatments, I’m not angry at family whose genetics may have had role in the development of DW’s disease, and  I’m not angry at God.  It’s simply a terrible thing that happened.

I have never bargained.  I haven’t said or thought, “well, if you just....then I’ll....”. I’ve simply studied up extensively on AD to understand its mechanisms as best I can and the potential paths progression may take.  Wanting to be as prepared and knowledgeable as possible.  

Depressed?  I don’t think so.  Not clinically.  Sad, oh yes.  Very sad.  There’s a huge loss here.  But I wouldn’t label what I feel ‘depression.’

And so, I had been thinking, I’m in the acceptance phase.  I know what I’m looking at.  I think long and hard about how to ensure DW’s care now, and what her future needs may be.  Carrying on, as best I can, one day at a time.

And yet.  Every day of life, for years now, and who know how long ahead, I experience grief.  Strongly enough that it takes a conscious act of will not to tear up at the sad day to day reality of AD.

People who don’t deal with AD think it’s about losing the keys, or a fire risk from a PWD using the stove.

But it’s the tiny details of daily life that are the heartbreak to me.  Like when I tell my DW she needs to wash her hands after going to the bathroom, but if the water is too hot she doesn’t know how to adjust the temperature and would burn herself if I weren’t there to oversee.  Like when her nose is running, and there’s a box of tissues in front of her, but she can’t make the connection, take a tissue, and wipe her nose without being directed to do so.  Like when she starts to say something, then trails off—the thought vaporized, or words not found to express it.

It’s also the big picture issues, of course.  When my DW asks me where her husband is.  When she wants to see long dead family.  When she wants to go home, from our home of 24 years.

These things, and a million more, bring with them a daily sadness, a sense of loss.   

So...acceptance?  Not so sure.  Maybe it doesn’t matter.  Models are just that, representations of reality but not reality itself.  But I’ve always liked to know where I am in my journey, and I’m left uncertain as to whether this is acceptance—does it just come with a large dollop of sadness?

Crushed

For me, acceptance is you stop "churning" and move on, carrying your burden of grieving with you.   You realize that all of the unanswered questions you had about the person will never be answered .  With my father acceptance was understanding that I would never get  an apology or "compensation" for the endless verbal abuse.   With my wife, acceptance has been more complicated and longer but much richer.  It began when she no longer knew me or responded to me in any special way. That was almost 3 years ago.  I went over and fed her "shell" lunch today.  Not a spark of familiarity.  Acceptance is i know that when I go and it no longer surprises or hurts in the momemt.    General grief is continuous. But her body being alive does not affect that.   
I certainly am open to some kind of parntership.  But I have gotten used to my own company these three years. Ill have dinner with anybody. But  do not expect the magic to return. 
 That is also acceptance

LadyTexan

I am not as well read as you are Jeff. I don't know the philosophy of what acceptance is. 

For me, when it comes to grief or dealing with a dementia related disease or life in general, acceptance means recognizing that I cannot change what it is and to simply let it be. 

For me, acceptance does not mean that an event or situation is fair or good or bad. It simply is what is. I tell myself, "it is this way now". It does not mean that the situation does not make me sad. 

I see the situation as something I cannot change, so I stop trying to fight it. 

sandwichone123

I think Kubler-Ross is less accepted now than it once was, as the way grieving works. As you say, not everyone hits every stage, but it can still be helpful in normalizing people's reactions that might otherwise seem unacceptable--especially strong responses like anger or denial.

The way I see it, acceptance isn't a feeling that it ok now, but these stages have more to say about where one puts one's energy. When you get to the place of "deal with it," even though there's still sadness, that's acceptance.You're not accepting that it's a great situation, but that it's the situation you're in.

When people are spending their energy railing at the staff or at God, or making appointments with other specialists (not for treatment options, but for a different diagnosis), that's anger or denial.

Jo C.

It is true that Kubler-Ross is no longer the standard description of grieving.   I remember way back in nursing school when this was the absolute; but some years later, this was no longer so.

I saw this article written by a psychologist who had some interesting things to say; no matter what one says, this is certainly a sad, soul deep process where one size does not fit all.

https://www.psychologytoday.com/us/blog/supersurvivors/201707/why-the-five-stages-grief-are-wrong

J.

A. Marie

The Kubler-Ross stages of grief aren't invalid so much as misinterpreted. EKR herself said not long before her death that she never meant for them to be seen as set-in-stone stages that people move through in one simple process. Me, I find myself cycling back and forth among them, depending on how things are going with DH on any given day. Acceptance mostly, but with frequent detours into anger (oh yeah) and depression.

Another take on "acceptance" appeared a few days ago in the NY Times in an article on the concept of "radical acceptance." Here's the link, hoping that you can get past the paywall (https://www.nytimes.com/2021/04/22/well/mind/radical-acceptance-suffering.html). 

chrisp1653

Just as we all face this disease differently, and face grieving differently, so ( I believe ) we all face acceptance differently also. It's certainly not some kind of plateau which, when reached, suddenly gives us some new view that was hitherto invisible.

For myself, I think it was when one of Barbara's home health nurses suggested that the level of care might be better if she was put on hospice.  I initially fought that, as I had fought most everything else pertaining to her dementia diagnosis - and subsequent treatment. Everything kind of coalesced when, after finally meeting with what was to become her hospice care team, I realized that the only one wanting to fight was me. Barbara herself seemed perfectly happy with the hospice team. When she would have her twice weekly bath / shower, she always seemed more at ease. When the nurse came to visit and check on her, she seemed to enjoy the extra company. And finally, when the social worker would come, Barbara would smile more, and she would try to talk more.

I guess what I'm trying to say here is that Barbara appeared to be more relaxed, and even happier, after hospice started. I think she was the one who accepted , even before I did.

In the end, she was contented right up until the evening she passed. Is there anything really better than seeing your spouse with no stress lines on her forehead when she tells you at night that she loves you ?

And this, even when she couldn't remember my name.

jfkoc

Acceptance to me means acknowledgment. I see that "it is". I do not have to like "it" or approve of "it".

I accept that my husband died but do I think I will ever stop grieving my loss. I do not think so. Rather I learn slowly to let it quietly walk beside me.

Ernie123

Jeff. Thank you for your post. I share many of the same thoughts as you. My wife has been in a memory care facility now for 16 months after seven years of decline with me as her caregiver. Living alone is difficult and I feel grief and sadness often. I thought by now I would have adjusted better, but some days are still very rough for me. Like you I don’t feel anger, or blame, or denial, just sadness and grief. I too am triggered by small things, like seeing one of her favorite plants bloom. Tears! But I do now have some good days, usually when I am focused on a task, and feel almost normal. But to answer your main question, to me acceptance is simply learning to live with the sense of loss. It isn’t going to go away but as time passes I guess we learn to accept that it will always be with us and carry on despite it the best we can.

M1

I'm glad for this thread too Jeff. I think true acceptance is hard before death, because there are still so many unknowns. I can accept the loss, in some ways-with dementia we have a long time to do that-but it's all still anticipatory, and each step in the process still causes new grief. I think I will have an easier time with acceptance once it's all over for her and I know how it ends. Right now, I can accept that I am already losing her, but the end is still out there to be lived through.

JJAz

This is a great discussion and there are lots of interesting and very valid comments here.  I too have a strong bias toward problem solving and thinking.  For me, true acceptance is on the 'feeling' side of the spectrum.  It is emotional and something that I could feel in my bones.  It's a very comfortable place to live compared to the thinking process. But thinking is still more interesting. LOL

CStrope

Jeff I concur with your post.  My acceptance is basically, It is What It Is.  I can't change it, I can't fix it, I can't make it better.

These forums are such a wonderful way to find others that can relate and support you in whatever it is you're feeling.  I have found very positive and helpful responses, and I have found some that have offended me.  

Listen to the positive, the supportive, the caring.  Throw the other ones in the virtual trash!!!!!

Each one of us is on this journey in a little bit different way.  Nobody's is easier than another's, and nobody chose this path.  Hang in there, and you will find whatever type of acceptance it is that you need, with each day that passes.

piozam13

For me, acceptance came when I hoped and prayed that DH be spared the long agonizing stages of the disease.  In other words, I 've come to to the realization that he wouldn't get better, just worse.  

One day he found out that he had soiled his underpants.  He called and showed it to me and said - 'that's it for me.  I'm done'.   That same week, when he fell, I had to ask the help of neighbors to lift him up.  

DH joined our Lord  less than 2 weeks after that.