In my previous post, I addressed the topic of “Anticipatory Grief.” Now meet a woman who is living it. Tersia Burger’s 38-year-old daughter Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease, a genetic disorder. She was diagnosed at eighteen months and suffered 41 fractures by her third birthday. But Vicky married at age 21 and is mom to two boys. A survivor of 81 operations, Vicky is currently on hospice care while her mom walks a hard path watching her daughter die in slow degrees.
1. When the doctors gave up on Vic, what was your first conversation like and what was it about?
Nothing in the world can ever prepare a parent for that moment when the death sentence is pronounced over your beloved child. I remember it as if it was yesterday. Thank God Vic was in the ICU and heavily sedated at the time. The doctor spoke to us just outside the operating theater. Colin (Vic’s ex-husband) and I went into shock. We did not ask a single question. We just looked at him…mute for that dreadful, heart-wrenching moment. Later that day, Colin and I spoke with the doctor. We had so many questions, but he had so few answers. He basically said that with Vic’s Osteogenesis Imperfecta, her tissue had been affected very badly. Her intestines were in poor shape and she had very bad endometriosis and abdominal adhesions. The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tract. There would come a stage when they could no longer operate and her body would not take the strain anymore.
Strangely, Vic knew. When she eventually came around, she understood that life as she knew it was over. When I broke the news to her she was calm. You see, all her life she knew that eventually this day would come.
2. How do you talk honestly about death to someone as dear as a daughter you love?
It is very difficult, but I respect her so much that I could not bear not to be honest with her. Also, I know how I regret not having had honest discussions with my mom before she passed. My dad had Alzheimer’s and we never did have “the conversation.” It feels as if Vic and I have to use up many years of talking that we will miss out on. I don’t want her to wonder about anything. She has enough uncertainty in her life.
3. Can you share some of the hard conversations you’ve had with each other?
- Vic is a bit of a control freak. She bought gifts and cards, wrote letters for important occasions in her boys’ lives–confirmations, 18th birthdays, engagements, weddings, 30th birthdays, birth of children etc. I had to tell her that she cannot rule from the grave. We will keep her memory alive. She must trust our love for her.
- I had to give her permission to die. I did that in June of this year as her pain increased and she spends more time in bed.
- Last night we spoke and Vic said, “Mommy, I don’t want to leave you. I wish we could do this together.” I had to tell her that this is her journey. I cannot go with her, but her father and grandparents will be there to accompany her when her time comes.
- Refusing her extra medication when Vic asked me for “a cocktail that will send her to heaven.” I asked her what she felt like eating for lunch and this was her response. She asked me for this more than once.
4. What feelings do these conversations leave you both with?
- Anger. These are not discussions we should have with our children. I get angry that Vic’s life is over and she is so desperate to live.
- Relief!! Nothing must be left unsaid.
5. What are some of the phrases that we can use to start hard conversations with loved ones who’re dying?
- Have you thought about…?
- How do you feel about…?
- I want you to know that I love you with all my heart…I’m here for you.
6. What are the most important ingredients in such conversations?
- Honesty and mutual respect
- Compassion and empathy
- Timing: Don’t attempt this kind of conversation if the patient is not up to it, or in a lot of pain.
- Be gentle and reassuring
7. What if the conversations don’t go as you’d like them to?
- Be sensitive to the fact that pain makes people emotionally over-sensitive. Vic often misinterprets what we say. She takes things very personally. She is almost jealous of my relationship with her boys. She feels excluded from so many aspects of our lives. Last week, Vic said: “You are the fun Oumie…I don’t make my boys laugh.” She is very sensitive as to whom the boys ask permission to do things or go places…That is okay because she is scared of losing everything that is precious and dear to her. Her role fluctuates between mother and dying person. It confuses the boys. The terminal person becomes single-minded in their journey. They become a little selfish and manipulative as they cling to life.
- Pain makes people selfish. This is a harsh statement. When your body is engulfed in pain, it must be very difficult to see reason or wait. It must be difficult not to lash out at the world. To not stop and think of the effect that your illness has on family and friends.
- It must be resolved as quickly as posible. We never sleep on unspoken or unresolved issues.