This Is Life

Posted: 12 years ago | By: Christine Somers | In: Family & Relationships | Read Time: 3 minutes, 25 seconds

There is a doorman in our building in the City that had been aloof and cool towards me since we moved into our apartment four years ago. He was not unkind just distant. After he learned of my mom’s illness he came to me and earnestly shared with me his affection for his mom and family and his prayer that my mom would be okay. After one of Mom’s medical emergencies, I was leaving to go to Florida; he stopped me and spoke of the loss he felt when his own mother’s health was failing.  He wanted so desperately to help me find comfort when I looked up at him and said, “This is life”.  He responded, “Yes, this is life”. At that moment, he understood that I “got it”. 

It’s been seven months since Ed went in for the angiogram that started the family roller coaster ride. After Ed and Mom entered their respective rehab centers, my sister and I were able to return home. I have not seen my mom or brother for one month and daily, I fight feelings of guilt at not being in Jacksonville to monitor their situation. Every heath care professional we talked to tells us those patients who have family members that are visible get better care. I worry that both my mother and brother can’t represent themselves effectively right now but I can't walk away from my job, home and life without long term negative repercussions.  So the guilt. 

In addition to the guilt I feel sad when I think about my mom, alone in a rehab center that is starting to feel more like a nursing home than a temporary stop on her way back to her home of 40 years. We find it difficult to talk on the phone; her verbal skills are impaired. In the morning, she can communicate more clearly than in the afternoon but there is so little to share. At times, I wonder if she knows who I am.  She seems to forget who we are if we don’t have daily physical contact with her.  My brother had been unable to visit for days and she seemed confused when we mentioned him. 

My sister and I are working to figure out how to manage a life that is divided between two places and two sets of responsibilities.  The crisis point has passed but “life” did not revert back to what was before the medical emergencies.  We continue to sort out what is a real need and what is our own need to control. We had to go home and back to work, clean our own homes, take care of our children and husbands and we had to admit that we couldn’t do everything.

The authoritative advice given to caregivers who are managing long-term health care situations is, ask for help. Yes, that is good advice but how do you pass off the care of your mother to a neighbor or paid caregiver? How do you relax while wondering if your mom is afraid or lonely or if the insurance company is going to release your brother from rehab before he is really ready to go home? How do you manage the emotion that surrounds watching someone you love in physical jeopardy? 

Julia and I have slowly developed a “plan” to manage the new realities of life. We have agreed but have yet to test the idea that we both don’t need to be in Jacksonville at the same time during each medical flare up. We have divided responsibilities. She monitors Mom’s voice mail and returns calls and I interact with the rehab center. We set up a telephone tree so that key people have the information they need. Slowly we are building a structure to support life as it is now. But today, the real struggle is managing the guilt and sadness. The challenge is to find peace and joy in the midst of constant change and to remember that this is life.