Grief before Loss?

The phrase “grief before loss” often refers to the loss one feels when someone is a caregiver for a person with a slowly degenerative disease like MS or Alzheimer’s(AD) or Parkinson’s(PD).  The changes and disease process may be gradual with a slow loss of whom the individual used to be, i.e., your spouse.  Anyone going through this process is experiencing grief.  It is the slow loss of the person you once knew.  As the disease progresses in the cases of AD and PD, the loved one may even begin to forget who you are.  So, the caregiver may ask these questions:

     1.  Where is the person I married? As the disease progresses, the person in front of us seems to transform into an unknown person. We find ourselves looking for that glimmer of the one we married to reappear. On an intellectual level we know that person is our spouse, but they do not seem to resemble our spouse. The type of care we need to give our spouse makes that person seem even less like our spouse. The person is lost as an equal partner; we grieve their loss as we care, and, in many cases, learn to love the new person that is in place of our spouse.

     2.  I miss the talking: It is the conversations that one shared with his/her spouse that many miss the most. Those conversations that are sometimes about nothing, and sometimes sprinkled with those little phrases and pet names spouses often have for each other, conversations that sometimes last into the wee hours of the morning. It is in those conversations that we share our dreams, hopes, and beliefs, as well as discuss the meaning of life and love. Though you may never be able to find a way to share these conversations or thoughts, you might try journaling which often can help ease and fill the need of communicating.

     3.  Why do I feel so alone: The caregiver spouse experiences something more than mere loneliness. Where we, at one time, had our spouse to turn to, we have only ourselves. Our spouses are, in some sense, our security that we shall never be completely alone. Many caregivers find different ways to deal or adapt to this aloneness, none of which anyone should ever pass judgment on. Some caregivers will seek out some form of companionship. Many times it will be in a close friend, perhaps of the opposite gender, with whom we can exchange some form of conversation, a meal, or other mutual interest. Some may even find a companion who becomes much more

intimate. In each case, the caring spouse is the only one who can say whether they are in the right or wrong. Those who know of the sheer aloneness that a disease creates know deep within their being how complete it can be.

            An important thing to remember is that you do not have to be alone in this process.  About Seniors has a weekly GBL (Grief Before Loss) group with Fr. Jeffrey Sarkies every Wednesday in Sun City West from 2:00 until 3:30.  Fr. Jeffrey also does one-on-one sessions by appointment.  Go to our website: to see the schedule of support groups and special events for caregivers.  You can blog with us there too.  I look forward to hearing from you……take care……Regina