It was a late night phone call while I was away on business travel. I immediately felt a knot in my stomach, fearing it would be about my parents in Arizona. But it wasn't. It was worse.
It was a family friend. "Shaelee is dead," she said. Just like that.
The sound of those words is harshly embedded in my memory; a constant reminder of our instantly new reality. She was gone. Nothing we could do would help her anymore.
My 19-year-old beautiful, sweet, generous, talented niece, who had so much opportunity ahead of her, had lost her life to suicide. My mind raced, my knees buckled and I heard the sobs coming out of me more than felt them.
Shaelee suffered from bipolar disorder for most of her life and she was on several medications. She had attempted suicide before.
It's hard for me to grasp that she's never going to walk in the room and give me a hug, sing with her grampy and me or work a jigsaw puzzle with her grammy ever again.
It has taken almost two months for me to even have the ability to write these words.
When I returned to Arizona, I had a seemingly insurmountable mountain ahead of me: telling my parents that their granddaughter had passed on.
Shaelee was the grandchild with whom my parents had the closest relationship and was the only one nearby. They had taken care of her when she was younger, and she had helped care for them as they aged. She had a very special relationship with both of them.
It was gut-wrenching to be so far away, grieving and holding the knowledge that my parents weren't aware of Shaelee's passing. But I needed to tell them in person. To my surprise, several people suggested I just not tell my parents. I will never understand that attitude. Did they think Mom wouldn't notice that her granddaughter just never came around again? While my Dad's dementia had recently progressed more rapidly while he had been ill and I wasn't sure if he would completely grasp what had happened, Mom is mostly spot-on and not telling her was out of the question. Telling one and not the other was not an option.
I decided to bring a family friend with me because I knew I'd need support and none of my sisters could be with me. This friend is a social worker who could easily jump in if I dissolved; she is a very calming force. I had also talked to our paid caregiver ahead of time so that she would be prepared. I spoke with the nurse who coordinates personalized living services at my parents' community and she was open to a call at home on a Saturday if I felt Mom or Dad needed attention. The support of this care team was critical. They were all so understanding and compassionate. I don't know what I would have done without their kindness and willingness to accompany our family on this difficult journey.
I prayed for strength and sat on the floor between their two chairs. Holding their hands, I gently explained that Shaelee had lost her life to suicide. My Mom, who has aphasia, had only a little difficulty understanding what I was telling her; it sunk in very quickly. She reacted the same way we all did - with shock, disbelief, sadness, tears and questions. I hadn't seen my Mom cry in many years, and I was glad she was able to channel her sadness and shock in a healthy way.
My Dad seemed to understand, and he also cried a bit. But he quickly went into his roles as husband and father - just as he would have prior to dementia setting in. He immediately focused his energies on comforting Mom and me. Falling into that role actually enabled him to feel he had the ability to help, which is so important to him. He was simply my Daddy and Mom's partner in that moment.
We talked and cried off and on for several hours, and I explained what had happened over and over again in response to their questions. I am not afraid to show emotion to my parents and we shared our vulnerability and our strength with each other.
A week later, we held a memorial service and celebration for Shaelee. Again some friends suggested Mom and Dad not go as it would be "too hard on them." But my parents have a resiliency and wisdom that is lost on those who only see outward appearance. I know that rituals are an important part of grieving and that doesn't change with age. It was out of the question for my Mom not to go, and wherever Mom goes, Daddy goes.
In the days since, my Dad's memory of Shaelee's suicide has faded, which is both distressing to witness and perhaps good, as his grief period was shortened. The trauma the family has gone through has affected him, I'm sure, as those with dementia are very sensitive to stress around them even if they don't consciously know what the cause is.
Caregiving is incredibly arduous in and of itself, and it doesn't happen in a vacuum. The other demands of our lives continue, and reaching the point of despair can come frequently. Grieving the devastating loss of my dearly loved niece is an overwhelming life circumstance. Grieving a suicide adds an additional level of complexity - the regrets, questions, "what ifs," sadness and, yes, anger are tremendous. While I know all of these emotions are a normal part of the grieving process, the combination of these things frequently seems like just too much to bear.
I don't have the luxury of just focusing on my own relationship with Shaelee and my grieving process right now - or even doing many things that are nurturing to my soul at this time when I so need it. Getting out of bed each morning and jumping into the needs of my parents (including three more hospital stays for my Dad) since Shaelee's death has pushed me to the very edge more than once.
But I also know that if it weren't for my parents' needs I might not make it out of that bed each morning. Because of them, I put one foot in front of another each day. They motivate me with a sense of purpose that prevails over the temptation to just not care about anything.
Perhaps, as difficult as it is, caregiving is actually the gift that will carry me through the most painful days of grief, one breath at a time.
* * *
My sister, Susie, gracefully and eloquently shared details of her daughter's bi-polar disorder in Shaelee's memorial service, including this information:
"The National Institute of Mental Health states that bipolar illness affects close to 7 million adult Americans age 18 and older every year, and that almost 10 million people will develop the illness sometime during their lives. About half of these will never receive the correct diagnosis or treatment. The World Health Organization indicates bipolar disorder is the sixth leading cause of disability in the world.
This disease is insidious, invisible and often deadly. Thirty percent of individuals with bipolar illness will attempt suicide during their lives, and 20 percent, up to 1 in 5 people afflicted with this disease, will succeed."
I have found information and help through this heartbreaking time from several organizations, including: