Dear Dr. Neimeyer,
Your recent reply to the woman widowed over 25 years ago resonated with me, even though my husband is still alive. I am a member of the Well Spouse Association, a national nonprofit organization which provides peer support to those caring for chronically ill or disabled spouses.
“Chronic sorrow”…”bleaching out of emotions”…”surviving but not thriving”… “sense of not fitting in”…”secondary losses”…”loss of basic world view”…all spoke to me as a spousal caregiver for over 40 years to a man paralyzed from the shoulders down.
There are no rituals equivalent to a funeral or memorial service for people in my situation. Our spouses are still alive, but in greatly compromised conditions which restrict the fulfillment of many dreams once held. I’ve heard the term “ambiguous loss”, coined by Pauline Boss, and many long term spousal caregivers to those with progressive illnesses find that applicable to their lives.
Would you kindly address this issue of chronic sorrow, or ongoing grief, among those whose loved ones are still alive?
Lauren
Dear Lauren,
Your recognition of my descriptions of chronic sorrow in your own experience is a profound validation of the importance of this neglected topic. Even when caregiving is provided to a spouse, parent, sibling or child with great love across the years, there is no denying the many losses, visible and invisible, that accumulate for the caregiver, and perhaps for the whole family. Further compounding the unspoken grief that arises in such circumstance is the guilt that often accompanies it, when caregivers seek some form of freedom from the heavy responsibility that life and fate have thrust upon them, even for a few “stolen” hours. Sometimes regarded as “saints” by others in their network, they often don’t feel saintly, experiencing cycles of resentment and frustration on the one hand, and self-criticism and recommitment to the task on the other. And depending on the nature of the disability, they may lack even the basic satisfaction that comes with knowing the appreciation of their loved one, when cognitive decline, communication disorders, or profound developmental disabilities or the rigors of illness make the yearned for dialogue impossible. Worse still, a medical system that adequately treats infectious diseases is often far less equipped to provide adequate care for chronic disability, providing only brief and occasional assistance with basic needs.
Clearly, there are no easy answers to these conundrums. Life can be grossly unjust, and injury and illness can strike at random. We have far less control over events than we commonly imagine. Suffering is inevitable in all lives, but it is not evenly distributed. And dreams can be shattered in a moment, or degraded across a lifetime. None of these inconvenient truths bring comfort in the wake of what can be a living loss, one that seemingly knows no end.
So, what can one do? I offer here a few humble ideas, recognizing at the outset that none is a panacea.
1. Count your losses. Start with a question: What have I lost? Take out a sheet of paper, and write down a short answer: my career, my free time; travel, my friends–whatever comes to mind. Then write another answer: my freedom, spontaneity, possibility, hope. Then another. And another. Don’t stop until you have listed at least 10 things, which can be concrete (e.g., the husband I knew, my own space) or abstract (e.g., my patience, my future). Notice the feelings that arise as you make this list, and give them space.
2. Ritualize these losses. Consider some creative way of acknowledging these losses, perhaps in ritual form. Perhaps you could write each on a slip of paper, and place them in a special box that “contains” them. You might then take one out each week, and journal about it for 30 minutes. Or perhaps you build a ritual fire, and as you place each of them in the flames, you repeat as a mantra: I release you. Perhaps you construct a ritual of renewal: Your list refers to the loss of your energy or vitality, so you plan a revitalizing day at the spa. You feel you have lost your friends: Reach out to three of them for a simple get together. In other words, rather than bearing the losses silently, bear them consciously, and listen to them closely for signs of what you might need, and with some ingenuity, might get more of.
3. Open to change. Take another step, rather like the first, asking, “What would I like to change?” Stay with it until you have at least 10 short answers. Notice the feelings that arise as you make this list, and give them space. How do they compare with the emotions that arose with the first list? Which speak to your deepest yearnings? Then earnestly ask yourself, how can I make this so? Rarely will the answers be simple, or complete. But lived into with creativity, with the collaboration of others who care for you, and with self-compassion, you may find that you can identify and surmount some of the inner and outer obstacles that stand in the way, in a way that that offers prospects of fuller living that make life more sustainable and meaningful… even in the presence of ambiguous loss.
–Dr. Neimeyer
Dr Neimeyer,
I am going to anticipatory loss in the way I never imagined. My adult children aged 30 and 28 have decided they are angry with me and they wish to disown me because I am not handling the situation the way they wish. At one point, we removed my husband from the hospital and placed him in a private care home. Although the Private Care Home seemed good initially my husband ended up going into the hospital twice during his six weeks day and the medical personnel deemed that my husband should not return to the private care home because it could not manage his care. My children love the home and wanted their dad to return despite the lack of care which they seemed unaware of.I followed the direction of the medical care team and placed my husband in subsidized, supervised long-term care. My children have judged this and my earlier decision not to bring my husband home to care for him, because of my inability to manage his care, as a lack of love for my husband on my part and as cheapness on my part. As a result, my children have basically cut me out of their lives. My children, over the past four months, have been very aggressive and angry towards me. So much so, that I even changed my locks and codes to prevent them having access to my home. My children’s anger and lack of support for me as their mother, and a human being who has supported them and cared for them over the past 30 years, has been very difficult on me. The fact that I am going through this anticipatory grief on my own while having to deflect the anger and aggression of my children is very difficult and hard to learn to manage. I feel very alone and, were it not for the support of my very good friends I would not have survived this far. My children have basically cut me out of their lives, except to make request of me that’s suit their purposes. They do not acknowledge my presence or needs in their lives as their mother. They do not seem to care about my health or my emotional needs for support. They only express concern for their father and his emotional needs and their perspective of what they want for him. They wish for their father to return to the private care home where he was not getting the care he needed and he was developing bedsores and other conditions that were harm his health. They seem to resent me very strongly for having made the decision to put my husband in supervised care that is regulated and guaranteed to give my husband the care and comfort I am concerned about in this period of his life. I wish my husband to be cared for properly and given comfort care for whatever time he has left. My children are not in agreement with my decision and blindly wish to have him returned to the care home or put in another private care home because their belief is the more you pay the better the care you get. Unfortunately $7000 a month in personal care home fees is not sustainable for me. My children do not understand this and are calling me cheap and claiming that I do not love their father as much as they do or I would be willing to pay this money. I am having to watch out for myself and my future as well as my husband‘s current care.I am handling the situation as I know my husband would have wanted me to. My children are in denial of their father‘s condition and they feel that he has a good life; they do not understand that what he is living now is not a quality life. They resent my evaluation of his situation and feel I am giving up on their father and moving on without him. But in reality, I am listening to the doctors, counsellors and other medical personnel who have been advising me and cautioning me not to be in a state of denial. I have come to except that my husband is slowly dying and I believe my role is to make sure he gets the comfort and care he needs as he goes through this stage of his life. Sadly I am having to do this without the support of my children while having to deflect their anger. I would appreciate any guidance or coping techniques to help me manage the situation as best I can so that my own health does not suffer more than necessary. I wish I could speak to my children, but when I do they shut me out and refuse to hear my words. They will not acknowledge my presence other than as a source for information about their father. Previously my children and I have been very close; so this change in our relationship has been very drastic and devastating to my emotional well-being. My counsellor who I could only have briefly has stated and made me understand that my children in their grade have chosen to emotionally abuse me. They do not hear me. They look at the situation from their perspective only and they wish their dad to be in private care because they feel that is our only way to show our love and support for him. Because I cannot financially sustain a $7000 a month fee they feel I am not loving or supportive of their father and that I am the one causing the change in our family. They place the blame for what the disease is doing on my shoulders; yet I am not the culprit, the disease is. Please give me any guidance or coping techniques that you have to help me through this difficult time and enable me to better support my husband without wasting energies on deflecting my children’s anger.