AMBIGUOUS GRIEF

 

            In some ways this was covered when I wrote about Ambiguous Loss.  But there is great complexity to the grief process, and especially when there is ambiguity.  Grief is something we all experience at various times in our lives.  There are complex responses, including denial, anger, sadness, and depression.  

 

We express some of these feelings to others some of the time.  And, as experts have written, grief becomes something others would rather not deal with on a continual or continuing basis.  That is, there is a time for sympathy over someone’s loss and a time to “move on,” at least that becomes the typical attitude, perhaps a social norm when we address the losses of others.  There is even the unfortunate claim by some experts that a year (sometimes 6 months) is long enough to grieve for someone close to us who has died; after a year, some claim, we certainly should “move on” or the grief   is “unhealthy” in the mental health sense.  I do not accept that for those who have a loss; there is no boundary for grief. 

            

            Ambiguous grief is the grief state that follows from ambiguous loss.  The person we love is still here, still alive.  Yet in many ways they are gone, and increasingly so over time.  It seems wrong to grieve for someone who is alive, yet we are grieving their loss to us and to others.  Early on at least they can grieve their own loss of self and of the projected future.  With many of these dementias, we grieve long before death.  But the reactions of most others and cultural practices and rituals are not yet definitive that there is a loss; she is still here.   We grieve, though many others do not understand; and it continues. (Credit for this concept of ambiguous loss to Pauline Boss, a Social Worker who wrote books about the issue:  Ambiguous Loss and Loving Someone Who Has Dementia) 

 

            Here are some of the issues faced with ambiguous loss and the resulting ambiguous grief.

 

            First, the loss is much more gradual and less likely to have that intense moment, as is generally associated with a sudden death.  Much as with a disease such as cancer, there is a period of uncertainty when it is not clear that the disease has been diagnosed definitively.  We were not sure for several years as memory issues came and escalated.  And Beverly’s first diagnosis of Alzheimer’s was canceled by an expert’s diagnosis of Mild Cognitive Impairment (MCI), which sometimes does not become Alzheimer’s. Even after it was clearly diagnosed, I engaged in a strong effort to find a more natural set of interventions to stop or reverse the process, just as others have tried for cancer and other diseases. Trying to find some alternative cure and denial are both more likely with any disease that has a bit of uncertainty and a slower progression.

 

            Second, and very significantly, this proceeds for a very long time.  That happens too with cancer sometimes.  The cancer is under control for a spell, then returns, then…. With dementia, the time frame can be very long; in our case, more than 15 years at this point.  At some point, there will be a death, very likely a direct result of the dementia process.  In the meantime, dying started many years ago and proceeds a little at a time.  The grief is there from the beginning and does not cease for a moment.  Early in the process, it was shared grief as Beverly and I both knew very well where this was headed.  Now I grieve, not knowing what, if anything, she understands about what is happening to her.  On the one hand, my grief may seem to be abnormal grief, extending well beyond the “one year” time frame sometimes set, though wrongly so, for grief.  But there is no expiration date on such grief; it remains.  Continuing grief is the reaction of spouses and of other loved ones (children and friends) of those with dementia.  Some do “move on,” relatively speaking, renewing their lives in many ways.  Sometimes that is encouraged by geography, that is, the distance from where they live to where their dementia relative/friend is.  Others find it difficult to deal with their loved one, who becomes increasingly difficult to manage or those relatives/friends struggle to deal with their own ongoing emotions.  Such emotions include those generally associated with grief, including sadness and anger.  And I understand “grief” fatigue as well; that comes and goes for me.

 

            My own experience became a need to move into a different stage after more than thirteen years of ambiguous grief.    Covid was helpful in that way, as it broke the pattern of long hours with her.  Now I cannot ever return to that; it was mentally and physically unhealthy for me.  Others who knew more about caregiving for dementia had told me for more than two years that it was unhealthy.  And many friends and relatives felt that I needed to take more time for myself; advice is not always attended to when one is in the middle of a difficult situation.  Still the grief continues—the ambiguous grief.  And it is likely for some time yet.

 

            Third, this is a painful process with new losses continuing and on a somewhat unpredictable timetable.  Each change in Beverly’s functioning is in a negative direction.  Of course, she has good days, but those are “good” relative to the background level of functioning.  Slowly and mostly a bit at a time, functioning is lost and there is never a genuine reversal.  A period of “remission” is out of the question.  The losses are of all types, as the damage to the brain spreads into many areas.  Memory is often the first to be disrupted, as it was with Beverly.  And, at first, that is just short-term memory.  Then memories from the past begin to disappear, predominantly the more recent memories.  Recently I wrote about social norms that disappear.  Basic thinking processes are absent, matters such as reasoning or figuring something out, simple things like opening a door.  Speech and understanding of other’s speech slips away week by week and month by month.  She still forms comprehensible words, but the words are strung together in a way I do not understand, sometimes termed “word salad.”  Lately she says “I want to..” then trails off into incomprehensible sounds.  Whether she is trying to express a true wish or is simply repeating a phrase is hard to know.  This has happened multiple times and I feel that her mind has a thought she wants to express but it cannot be formed into words.  Communication is very limited, as it has been for more than a year.  Incontinence is inevitable and most residents in her facility wear “pullups” all the time.  And most recently she has been confined to a wheelchair or bed, though staff still help her walk.

 

            And medical issues come with all of that.  I have written about the blood clot on her lung and her seizure, both related to the dementia process. Failure of processing in the visual system of the brain is characteristic of Alzheimer’s. For several years, there were times when she would ask for her drink, even though it was directly in front of her on the table.  And then, for her, there is the added problem of wet macular degeneration, which is treatable, but it is nearly impossible to continue treatment for that degeneration. Most recently, she cannot follow the instructions necessary to take a photo of the retina and could not follow instructions to position herself for drops in the eye, making it impossible to attempt the needed shot.  

 

These kinds of losses bring sadness; early in the process she experienced the impending doom of the process.  How she understands these losses now is unclear, but there must some minimal experience of aspects like not being able to walk on her own, not feeding herself. “Painful” and “death by a thousand knife stabs” is my experience and there must be some feeling of that for her.

 

            So what is unique about “ambiguous grief?”  It is simply that we grieve for a loved one who is still with us physically, but increasingly gone in terms of human functioning and of our relationship.  Is it like “slipping” into unconsciousness?  No, though it now seems that way with her; there is.  For many years, Beverly was conscious, just slowly losing her mentality, her thinking, processing, and perceiving.  Even now there is consciousness accompanied with confusion in the extreme.  There is no specific moment to begin or end grieving; it is ongoing and unending.  Even with a rapid process of dementia, the course is typically a few years.  The person is there and not there at the same time and increasingly not there.  

 

            The emotions and reactions characteristic of grief are all there for me as for most caregivers and their diagnosed loved ones, too.  There was shock at the initial diagnosis.  Denial was there too, though we were ready to accept the diagnosis, partly because Beverly’s Mother had been diagnosed with Alzheimer’s.  

 

Sadness and even depression seem inevitable for most of us.  That has been a strong element of my emotional reaction; while it comes and goes, there is always sadness hanging in the background of my mind.  Guilt was never a significant reaction by me and likely won’t be.  As I wrote about previously, I have had my own failures as a caregiver and have assuaged that guilt by learning from those mistakes. 

 

Anger has only been stimulated by the occasional failures of people to do their jobs well, typically as my rare and calibrated response to a failure a staff member who should have done better.  Not too many weeks ago, she did not want to get into bed, so the staff caregiver left her on the side of the bed.  Then she was found on the floor later.  That was upsetting when reported to me.   Anger at God?  Not part of my philosophy of the universe.  Certainly resignation, one of the grief reactions is there, as we have to accept the state of reality.  

 

And the grief continues, the ambiguous grief to ambiguous loss.