The Caregiver Goes On – exchanges grief for the permanent sadness of loss

I never was afraid of grief or loss. After a long career in the military I had no illusions about my own mortality; it was obvious that we all, including me and my family, would eventually shuffle off this mortal coil (Hamlet 3.1.56-69), but I wasn’t actively afraid.
I was introduced to the potential impacts of grief when, soon after my wife’s diagnosis with the disease that eventually killed her, I went to a large educational meeting of the disease-specific organization and was stunned to meet people who, 7 or 8 years after the death of their loved one, with no actual current involvement, still seemed captive enough in that grief to travel hundreds of miles to hear discussions, hear presentations and just talk with others who had also lost their loved one to this disease.
I was shaken. Was this disease, was being a caregiver, was grief such a powerful, traumatic experience that, not only did the disease  kill the patient, but but the attendant emotions had hold of the caregiver for all time?
(Later, after seeing many people in this same situation in the grief support groups, I learned that this extended grieving is called ‘complicated grief’ and there are several centers that study this phenomenon with an eye towards treatment. An internet search for ‘complicated grief’ will yield information.)
There has been only a relatively small amount of loss and grief in my own life – my parents and a younger brother – and yet from reading support group posts and attending in person groups, I have the impression that the grief after the death of a loved one is in three general increasing categories of severity. The death of a parent or someone in the previous generation is somehow sort of expected, even though it may be exacerbated by being the first death one experiences. Next in increasing severity is the death of a partner or spouse, immeasurably painful.
It seems to me, from observation only, that the death of one’s child leaves a wound that never heals, a sadness that colors one’s life forever, the most painful of all.|That depth of loss had been made obvious to me when my youngest son developed Type 1 diabetes. I was the typical single parent, overwhelmed with life and tasks and responsibility, thus I missed seeing my youngest son becoming diabetic until he actually went into diabetic coma. For years afterwards I had the same nightmare; I would go into his room and see him lying in bed covered with sores and I could do nothing. That was my response to a treatable disease that he has conquered. I can’t imagine my response to his death, my feelings, my grief and guilt if he had actually died.
Clearly the degree of grief changes according to other factors, most importantly the kind of relationship between the patient and the person experiencing the grief.
In my case I was grieving the death of my wife. We had been was married for almost 36 years, I was deeply in love with her and had spent a good proportion of our life together actually caring for her, thus increasing the emotional intimacy.
On the other hand, she had been dying for years and I had the chance to prepare.
A short time before my wife’s death, I attended a support group run by a regional hospice. Of the ten or eleven people who attended, more than half seemed to be caught in that intractable grip of grief, breaking down into tears, not only when they spoke themselves but when others talked of their pain. And the depth of their grief seemed independent of how long they had been grieving.
I think of myself as a strong person and remember thinking that I wouldn’t be like that. I wasn’t going to be caught, I was not going to allow my wife’s disease to kill me also.
We are organisms; our instinct, even at the cellular level, is to repair ourselves, to keep on living. I was going to do whatever I needed to do, no matter how difficult, to allow my mind and body to heal.
At first I took her death quite hard, spent weeks almost frozen and only eventually gathered myself up to keep from falling into the trap of grief from which I could not extricate myself.
Within weeks of Jackie’s death, I had started rearranging my life. I gathered up every single thing I wanted to take with me, prepared my house for sale and charted a course for the first year of my life. Of course I was miserable, unhappy and lonely but I trusted in my conviction that doing something to allow life to restart is better than not doing.
It is easy to sit and be in pain and expect that time will effect the change. That is a passive acceptance of chance, like hoping that it won’t rain rather than fixing the roof. For that same reason after surgery, a patient is forced into activity, painful as it may be. I believe there must be a conscious effort to move on, to be alive again.
So, six months later I am living 300 miles away, still working on living again, still doing tasks to help that process along.
My last, surely most painful chore is to sort through 11 boxes of my wife’s personal papers and our family pictures to see what can be discarded, what should be sent on to children and what I want to keep. That turned out to be even more emotionally difficult than I had expected.
It had been my habit to leave notes from Jackie on sentimental occasions or when I left to travel on business; she had kept every single one of the notes I had sent or left for her over the years. I think I’ll keep those and let my children discard them when I die.
More important, I found a note to herself from 1991, 23 years prior to the actual diagnosis of PPA, in which she writes about trouble making decisions in grocery stores and increasing confusion as she went through the aisles.
It is very difficult to accept that she is gone; I’ve accepted the fact intellectually but she is always on my mind and my life runs on the sad melody of loss.
I don’t want to change that.
There is a difference between grief, which I see as an active process that displaces or distorts some of the activity of living and the feeling of permanent sad loss which is the background music of a new life, acknowledgment of the loss but an integration of that knowledge and sadness into a new life.
It hasn’t been easy to fight through the transition from grief to loss. It requires willingness and effort to go on, to make that transition. Of course I am stilling working on it – and imagine I will for some time. My wife’s memory will always be with me, just not always with so much pain.
The question always arises, ‘Is there some ‘normal’ length of time to actively grieve? When should people expect to move on?”
In at least two of the online groups that deal with grief, there are recurring discussions of how other people might seem insensitive to our grief, that we are being given advice that we don’t want, can’t use – inevitably about the length of the grieving period.
I imagine we each feel that our own grief is the biggest that could ever be, that we are suffering the most, that we have lost the most, but that clearly isn’t so.
Of course there is some difference in how individuals feel and suffer based on the relationship and one’s own emotional make up, but the reality is that we Westerners live in a cushioned environment, safe from most pain and grief so when we have a loss, we haven’t been inured to the realities of loss that are common in the rest of the world. In much of the rest of this world, either through disease or war or just the exigencies of fate, death and loss are much more common and people must go on, take up their share of life’s responsibilities and accept what life has handed them, unpleasant as it may be.
So when I read or hear someone complaining that their friends, their families or their work mates are not comforting or concerned enough, that they have been bruised by the nature of what others have said, that what others have said is insufficiently comforting or crudely expressed, there are two responses that occur to me.
The first is to the person who is perceiving the comment as being intrusive or rude. “How sensitive were you to grief before you had experienced it? Before you put your own hand in the flame, did you understand the pain? Perhaps people are trying to help but just don’t know how or what to say – just as you didn’t know.”
The second response is one that I have never been able to bring myself to say, although I think it routinely. I think that some people, intentionally or not, actually hold on to grief, are unwilling to make the effort to integrate the loss into their life, perhaps even use the grief as a crutch to keep from living again or just to attract attention and sympathy. Perhaps those making the unwanted comments are seeing this unwillingness to help oneself and reacting to it.
Giving up the grief also means giving up the attention that people pay to the person in grief and attention is a notorious drug. Giving up the grief means that, ll of a sudden, you aren’t special any more, no one gives you a break, no one takes care of you, you are just another person who must get along in life. Giving up grief means accepting that the loss is permanent and that you must go on with life.
The reality is that no one of us is special.
None of us but sociopaths will skip grief and loss.
By nature of being human, we all, except for sociopaths, will experience loss but the world expects that we should go on, must go on.

4 thoughts on “The Caregiver Goes On – exchanges grief for the permanent sadness of loss”

  1. I just read your article in Brandeis’ “Magazine”, then read your blog. Both articles have touched me. Having experienced first-hand the comfort of both an Alzheimer’s Support Group and a Grief Group, your quite powerful thoughts hit home. I am, of course, sorry for your loss. I just want you to know that your articles are thought-provoking. I think that being the “good husband” is both difficult and honorable. While we all promise “til death do us part,” in reality being a caregiver is not that simplistic. Kuddos to you and to all of those who endure extremely emotionally painful days, even with paid help in your lives. Carving out a new life after such loss is rough and a choice must be made. Wallow or create something good for one’s self? That is the question. Enjoy your memories.

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