Once Married, Twice Widowed
At the risk of being accused of a form of plagiarism, I ask: “What makes this widowhood different from other widowhoods?”
The original version of the question is asked at Jewish seder tables around the world, on the night(s) of Pesach (Passover) as follows: “What makes this night different from all other nights?”
This past holiday was my first Pesach in 50 years without my husband. That in and of itself is not unique. Many others will have experienced personal losses in the past year as well and have faced their holidays with an empty chair beside them…and a gaping void in their hearts.
The hardest concept to explain to those who have not experienced caring for a loved one with cognitive decline is the difference between this specific experience of mourning and that of someone who has had the shock of losing a loved one from an unexpected illness, heart attack, stroke, accident, or violence. We mourn differently. I know this because I have suffered the deaths of a mother from cancer and a father from heart failure. Each loss is unique. It is not unreasonable that someone uninitiated would not understand the difference.
Hence, I write to share these thoughts.
Dementia in all of its forms comes on slowly, with the rare exceptions of persons who are stroke victims or who incur another catastrophic physical event, affecting the brain.
Little by little, as cognition declines, the person’s ability to fulfill their role as spouse, parent, or sibling diminishes. Eventually the relationship tables are turned completely, as the caregiver becomes the parent, and the patient, unable to function as he/she once did, becomes the child.
For a relationship based on love, sharing, dreams, expectations, hopes, and a dual commitment to one another, the marriage faces an earlier-than-expected death. It is inevitable that the spouse will go into mourning for this loss, and most likely develop a form of depression while in their caregiving role. Not only does one lose their life partner, but they have become responsible, not only for all that their partner once managed, but for their partner’s physical, emotional, and mental care as well. Once the person whom you loved fiercely enough to marry is unable to function as your partner in life…a deep mourning process begins.
This period is incredibly difficult because those around the caregiving spouse or adult child do not fully realize the sadness one experiences from this ongoing loss. Some well-meaning family or friends may actually deny that there is anything serious happening to your loved one. That compounds the intensity of the initial mourning process. One’s mate is alive, but absent…possibly with very distressful personality changes. Others often deny that the decline is serious, causing the caregiving spouse to sink into a deeper depression which others either do not recognize or try to minimize. Their own lack of sensitivity is not intentional. Often, they think they are doing someone a “favor” by telling them that they do not see much of a decline.
It is no favor at all.
This is what I call the “first widowhood.” This “status” will last from the time that one recognizes their own loss and aloneness until the loved one physically passes at the end of their own difficult journey.
The “second widow/widower-hood” is, of course, when the end of days actually comes, and the loved one is laid to rest according to his/her traditions or those of the family. It is only then that others will recognize the loss of the remaining spouse. Others most likely will not understand that we have been in a form of mourning for a very long time, keeping a stiff upper lip as the world at large is not prepared to cope with our pain. In truth, others probably have their own emotional issues to deal with on matters they do not share with us.
At the moment of Hubby’s passing, supportive friends looked at me to see if I would become hysterical, begin sobbing, or show other visible signs of shock. None of that happened. I was deeply saddened that he had such a difficult final couple of weeks. It was clearly time for his body and soul to rest. However, this was actually my second widowhood for the same man. But this one is recognizable by others, and thus they know how to respond. I, however, am not as clear about how to move forward as others might presume.
For those who care for a loved one with any form of dementia, the demands and/or needs of these spouses are so enormous, that we ourselves cannot function properly on many levels. We pray for quiet and time to be able to think clearly and manage our lives.
Once the loved one physically passes, we are left with a massive hole. We are no longer needed. That which has taken every moment of every day…has disappeared. We no longer need to think of their health, cleanliness, pills, doctor appointments, bruises, bleeding, questions, food preferences, inexplicable pains, dreams, hallucinations, misinterpretations, confusion, difficulty in communicating, entertainment, depression, anger, or any permutation of these. We are free to think about ourselves for the first time in many years.
We have almost forgotten just how to do so.
Those who are full-time caregivers for a loved one will know exactly what I am sharing with you. Those who are not, will likely have no clue that there are two stages of loss in this experience, one when the spouse is alive, and still another upon their passing.
We are all unfortunately familiar with the mourning of the loss of loved ones to tragedy or life events. It is a different journey than that of the caregiver.
Although I write these thoughts as a wife who has recently seen her husband’s passing, the mourning of an adult daughter or son who cared full-time for their parent may be very similar. Do others recognize the degree of their pain when their parent finally passes? It is unlikely that friends and family will grasp the nuances of this specific loss.
Sharing these thoughts is not intended to evoke pathos. None of what I write is for that purpose. It is simply meant to open the eyes of those on the periphery of the care for a family member or friend in mental decline. Look around the patient and you will see those who are suffering the most. Be there for their first, as well as their second, mourning periods. Your warmth and caring attention to the caregiver’s unique experience will be enormously appreciated.
