I will share the details of the end of Dad's race in other posts. What I feel most compelled to share now are some of the issues I am processing and truths I grasped as Dad finished his race.
I learned that I needed to be proactive, aggressive and engaged in every aspect of Dad's care that was within my power. I had to let the medical personnel caring for Dad know that I was present and involved, even if I was geographically far away, and I needed to be vocal and insistent regarding any issues I perceived or actually saw. In caring for a loved one, silence is not a friend.
As one who does my best not to get angry, I saw several instances where anger was justified and needed to be unleashed. Directed, purposeful anger is sometimes necessary, especially in long-term care and end-of-life situations. Some medical personnel will attempt to guilt, shame or intimidate you, and you must push back. Over the course of Dad's care, had I not pushed back in a firm and unpleasant manner, he would have died several years ago.
Make the hard decisions and let your other family members know you are willing and prepared to do so. When doctors come in with all those hard options no one wants to hear, just say, as I did, "I'm making the call." It takes the pressure off of everyone else and lets them grieve and support as they are able, rather than being hindered by what the feel they cannot do.
Realize that communication is not limited to conversation. Cherish even the glimmers of recognition, the instances of connection and the mere moments of lucidity. If you have memories of loved expressed in the past, link the past to the present and communicate verbally to your loved one that you know they love you, you know they care and you are receiving the message loud and clear. Celebrate those tiny breakthroughs as the momentous moments they really are.
Let love abound and try with all your ability to understand when love is being expressed. I realized the last year of my dad's life that it was love that motivated him to stay alive. Just knowing we were there to be loved was all he needed to value his life. As difficult and toilsome as his last days were, he lingered just to show us his love. Whenever we voiced that we "got it" the joy and relief for him was evident. When love is all one has left and the bare bones expressions of it, one realizes the truth of the words attributed to the Apostle John, "If you love one another, it is enough!" Brothers, sisters and friends, love your family and love one another. It is enough!