pre loss grief

Crushed

Interesting Article

Understanding family members’ grief for a living loved one

Study looks at factors that influence pre-loss grief

May 10th, 2021

The symptoms of grief people feel for a loved one facing a life-limiting illness fluctuate over time, a new study found – suggesting that individuals can adjust to their emotional pain, but also revealing factors that can make pre-loss grief more severe.  Researchers examined changes in the severity of pre-loss grief symptoms in people whose family members had either advanced cancer or dementia......

The results also showed that family members of patients with dementia, for which there is no long-term treatment or cure, were significantly more likely than family members of cancer patients to have severe pre-loss grief – but that some people anticipating losing a loved one to cancer also had unexpectedly high levels of pre-loss grief.

Participants reported similar symptoms no matter how long they had been living with the knowledge that their loved one had a life-limiting illness – another surprising finding for Jonathan Singer, lead author of the study and a clinical psychology intern in psychiatry and behavioral health at The Ohio State University.

“People in this study had pre-loss grief at a very high rate after many years. That was shocking, because one might think over time it would get easier. But with Alzheimer’s disease, it can get harder, and with cancer there could be a similar trajectory, starting with hope at the beginning but feeling worse over time,” Singer said.

“What’s happening with these family members still struggling – is it the caregiver burden, is it that they’ve lost their identity, is it that they’re not engaging in pleasurable activities anymore? That’s what we want to hit on next.”

The study was published recently in the Journal of Health Psychology.

Though pre-loss grief is not a clinical diagnosis, prolonged grief disorder in people mourning the death of a loved one has been added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) released this year. Clinical criteria for a diagnosis include preoccupation with thoughts or memories of the lost family member combined with a number of symptoms such as intense emotional pain, a sense of disbelief and difficulty moving on with life.

 

https://compass.osu.edu/news/article/1bc719f34167f25b190053ef284f6c4b%23universityNews%3A749da98d72c5df3791aac94c4a48b379%23ARTICLE_CONTENT

Rescue mom

Interesting. He thought, over time, Alzheimer’s caregivers pre-loss grief would lessen? (I read this a couple times trying to better understand what he’s saying. What I think he’s saying sounds kind of incredulous to me—not the findings so much as what he seemed to think. But hey, hopefully a it will have some impact on other professionals. 

Now with in-person support groups, I’ve heard a lot of caregivers with experience in both losses talk about the “ambiguous loss” (I think that’s the term), pre-loss grief,  and how different they are for a more “physical” illness vs. a dementia. Much like this study, I think. That’s  anecdotal, though, and some professionals prefer a real study. 

tcrosse

It would be interesting to hear how a few years of pre-loss grief temper eventual post-loss grief. I, for one, was totally grieved out by the time my DW passed away. Am I doing it wrong?

LilySue

Just putting an actual name to what I feel every day is surprisingly helpful.

Rescue mom

LilySue…you can Google “ambiguous loss dementia” or “ambiguous loss Alzheimer’s ” and there’s a lot of info. It’s a real thing, talked about here. You are not alone. The person is gone, that loss is grieved,  but a body remains. Seems much the same as the “pre-loss grief” in the study, although I wouldn’t call it “pre-loss” myself. That is the loss, IMO. But that’s just me.

Tcrosse you are not alone either. I haven’t gotten there yet. But I sure do hear that from so many others. Not to mention there is no “wrong” in how others handle their grief.

Jeff86

 “People in this study had pre-loss grief at a very high rate after many years. That was shocking, because one might think over time it would get easier. But with Alzheimer’s disease, it can get harder…

I’m with Rescue Mom.  There’s a real duh factor here.  If the researchers spent 10 minutes reading posts here they would have gotten to the same conclusion a lot faster.  

Interesting question whether the long goodbye impacts the grieving process after the final loss occurs.  In my IRL support group, several caregivers have had their spouses pass away in the last year.  Each seems to have been hit pretty hard by his/her PWD’s passing, notwithstanding all the ‘pre-loss grief.’  Anecdotal and small sample size, granted.  

tcrosse

In my own case the pre-loss years were passed in running through the stages of grief and finally reaching acceptance, even before the final loss. All the grieving in the world won't bring her back.

Rennbird

I felt that my husband’s Alzheimer’s changed the entire way I lived my life.  While he was alive, I felt cutoff from the world as I had known it.  It was horrifying.  At the same time I was comforted by the companionship of women and men in my same position.  When my husband died, I felt immediate relief.  I had no tears left to shed.  He has been gone two years now and the intense stress of the Alzheimer’s years is over, but now I feel like a Zombie.  I am not sure I have any feelings left at all.  I make decisions when I have to but I don’t want to do anything complicated and feel as if I am not prepared to deal with the real world.  While my husband was ill, the world outside continued to change but I was stuck in Alzheimer’s World.  Three days after he was buried, COVID struck and the world shutdown.  I truly don’t know what or who to believe.  We all know about fake news.  I am fake living.  I recently read “In Love” by Amy Bloom.  I thought she did an excellent job of describing Alzheimer’s World.  Her struggle was trying to negotiate the Death with Dignity approach or the Right to Die.  My struggle was with the Veterans Admin and negotiating the bureaucracy.  I must say they were similar.  A bureaucracy is a bureaucracy.  All any of us really want is a miracle cure for our loved one.  Since this is impossible, I think the most we can hope for is a few moments of comfort.  When it is all over you are left with more financial concerns and the insult of filing taxes as a “”Single Person”.  I think that the IRS need another option for widows and widowers.  I was 23 when I got married and when my husband died, we were just a few months short of our 50th wedding anniversary.  I had been a child and then a wife and now I am a single person.  I try to maintain an attitude of gratitude and I think it has been helpful.  Sometimes, I cannot believe that this has all happened.

Crushed

Jeff86 wrote:

 “People in this study had pre-loss grief at a very high rate after many years. That was shocking, because one might think over time it would get easier. But with Alzheimer’s disease, it can get harder… 

I’m with Rescue Mom.  There’s a real duh factor here.  If the researchers spent 10 minutes reading posts here they would have gotten to the same conclusion a lot faster.  

One of the reasons we do research is to test "conventional wisdom".  and you have to do it rigorously , not in 10 minutes,  I.e.  the group her is in no way a representative sample. 

For example research tells us that rankings of schools are almost worthless if they do not adequately correct for parental demographics. As the legal joke goes. 
Q.  Why do Harvard Law graduates get the best jobs?

A,  Harvard Law  takes the best students and  even Harvard can't ruin them  

 

 

Stuck in the middle

The researchers would still have done the study if they had read our anecdotal reports, but they might have been less surprised by the result.  

It sounds to me as if the researcher is treating loss of a LO to AD as a single event, whereas Crushed and many others have eloquently described it here as a long series of losses.  We grieve when our LOs lose the ability to perform their occupations, when they forget significant events in our shared lives, when they no longer know us . . .   And we grieve each loss anew.

Perhaps it should be called "pre death grief" rather than "pre loss grief."  We suffer losses long before the death of a LO.

Jeff86

Crushed wrote:

Jeff86 wrote:

 “People in this study had pre-loss grief at a very high rate after many years. That was shocking, because one might think over time it would get easier. But with Alzheimer’s disease, it can get harder… 

I’m with Rescue Mom.  There’s a real duh factor here.  If the researchers spent 10 minutes reading posts here they would have gotten to the same conclusion a lot faster.  

One of the reasons we do research is to test "conventional wisdom".  and you have to do it rigorously , not in 10 minutes,  I.e.  the group her is in no way a representative sample. 

For example research tells us that rankings of schools are almost worthless if they do not adequately correct for parental demographics. As the legal joke goes. 
Q.  Why do Harvard Law graduates get the best jobs?

A,  Harvard Law  takes the best students and  even Harvard can't ruin them  

 
 I take your point, Crushed, and my comment was at least somewhat tongue in cheek.  And as Rescue Mom points out, the researchers seem to have had a different pre-conceived conventional wisdom than the study participants.

That said, a lot of social science research strives for a veneer of scientific validity when it’s really pretty soft and squishy stuff.  When economists provide consumer confidence data, what are their units of measure?  What are the measures of grief here?  Likely it’s survey-based and self-reported.  Doesn’t invalidate it but it certainly has its limits as far as rigor is concerned.  

And my favorite if stale Harvard joke is, you can always tell a Harvard man   But you can’t tell him much   

 

Crushed

Jeff86 wrote:

Crushed wrote:

Jeff86 wrote:

 

That said, a lot of social science research strives for a veneer of scientific validity when it’s really pretty soft and squishy stuff.  When economists provide consumer confidence data, what are their units of measure?  What are the measures of grief here?  Likely it’s survey-based and self-reported.  Doesn’t invalidate it but it certainly has its limits as far as rigor is concerned.

 

A topic near and dear to my heart  

I've done "science based" regulation for 45 years which includes evaluating the quality of "social science " evidence.  Engineers are the worst.  They use physical science concepts when evaluating social science evidence  (CF human factors engineering)   One article dealt with human response when an alarm went off.  The study used 20 male high school students in Singapore and assumed they could generalize to the entire world.   

Coming back to Alzheimer's.  Social sciences are basically observation of human behavior. 

Some behaviors are easy to observe, some are hard.   (if motorcyclists wear helmets is easy, whether they are drunk is hard )
 Connecting events to effects , some times easy, sometimes hard  (Abstinence only sex education )
Some effects are easy to observe, some are hard (Everything   related to firearms)
"Observer effects" are also common. 

Squishy does not begin to describe how poor the science can be  

Psychiatry is essentially  social science based medicine.

This sloppy mess is why we have conflict  here over Alzheimer's drugs.   The entire process of determining if a drug helps is very sloppy social science