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Saturday March 20,2010

Caregiving: Emotional Roller Coaster

by Deb Sims, MS,RNCS,LCSW, DeeAnn Burnette-Lundquist, Jim Baltzell, MD

I'm a caregiver to my loved one who is dying. That means my life has altered completely. My time is spent in providing home care as if I was a nurse. But I don't have shifts and I don't get off duty. I live this role 24 hours a day.

I remember the day I heard the news: terminally ill. All I could feel was shock, intrusion, violated, even hatred. Nothing could have prepared me for hearing that someone I loved was dying. My life is now in a strange state of suspension of everything that I use to call normal.

Since that time, my emotions have been on a roller coaster. Shock first, then disbelief, I just knew a mistake had been made. When it was inevitable that one hadn't been made, the anger began to surface. First, at what I perceived as inadequacy of the physicians, then at God. I'm embarrassed to say this but at my loved one too for dying. Part of me wanted to do everything I could to prolong the death, part of me wanted it over quickly, so the suffering could be at a minimal. That brought on fear about my own mortality. Then I felt guilt that I would wish for the relief of suffering. And grief because I was losing someone I loved.

Telling everyone was a nightmare. I learned that everyone reacts differently. I had to break the news depending on how willing or capable others were to hear. Some of the family denied it could be happening. Some pitched in to help. Some were remote and insensitive. And the children had to be told in a way they could handle and understand based on their age. Dealing with the medical profession has been hard. But checklists have helped. We, also, had to decide on where death would occur. Since we chose home, I had to convert a part of my house into a hospital room. But even though I had some difficult situations there, I'm glad I did it. I'll tell you some time how I set up the house, dealt with the medical profession, and made checklists.

Mostly, I just wanted to tell you, I'm grieving. I started grieving as soon as I knew the truth. I have a hard time dealing with the day-to-day changes in the personality of the one I love. I need to tell you about that also. There's so many things left unsaid yet. I need to learn how to finish talking about the things we still need to say. I need to understand my loved one is grieving also.

Some days, I feel I am blessed to have this chance to give this loving care. But it's extremely easy to fall into feeling self-pity. I just have to keep telling myself that I'm grieving.