“You don’t have to actually say goodbye, but you can all prepare for the parting that eventually comes.”
Life is a tapestry of many threads. Sometimes it comes to an end without warning, and the threads are broken. Picking up those threads and changing the pattern of life is a challenge that is difficult to face.
Saying goodbye at the time of death is never easy, especially when you are a caregiver for a parent, life-long partner or a child. Facing death with reality brings comfort and peace to both patient and family, although, no matter how prepared you are, the actual parting moment is never easy. One of my husband’s patients wanted him to be present when she left this life. One night on the way home from a formal dinner, we stopped at the hospital. As we walked into the room together, she smiled, thanked me for coming and said that she was ready. Her son said that he was ready too, and that they had been waiting for us. We held hands, my husband and her son holding her hands, and me holding theirs, with a nurse at my husband’s side. She said a few words to each of us, my husband nodded to the nurse and the nurse switched off the life support. The patient smiled, said goodbye, closed her eyes and was gone. Even the nurse had tears running down her face, but it was the most peaceful death possible.
Where we cannot all have that strength that patient had, and that she passed on to the people in the room, we can be prepared to say goodbye by discussing life and death openly as we are caregiving.
Having been a caregiver for several years, and after talking to many people who have been caregivers, I don’t think that there is an easy answer for everyone. Each situation is different. One friend, who was the caregiver for her husband, who had the worst kind of Alzheimers, told me that she and their children had said her goodbyes years before his death. When he finally died, his death brought nothing but relief. The family quietly took up the threads of their lives, focusing their thoughts on the good memories. In another instance, a good friend who had waited until everything was in place, funeral arrangements made and hospice on board, said good night to his wife and sons then slipped away early in the morning when everyone was asleep. They had been prepared for the moment of parting for some time, and, again, the threads of their lives were pulled together without him, held together by good memories.
Being prepared for death by discussing what the patient wants, what you all want and above all what you all expect and sharing memories while you can, is all important. At the end of my husband’s life, when family and friends were in the room we spoke to each other as if he was a part of the conversation but just listening. Letting the person know that it is all right to leave whenever they are ready, is also very important. You don’t have to actually say goodbye, but you can all prepare for the parting that eventually comes. And when it does come, and all of the business of death is taken cared for, then you need to start to reweave your life into what you want for yourself and those around you.
Having a Durable Power of Health in place gives people the comfort of knowing what the patient expects as he or she reaches the end, especially if they cannot communicate their wishes as their illness or dementia progresses. All too often, what the person wants and what the family wants are different. When the patient’s wishes are in writing, it makes all the difference in the world.
My husband’s patient knew how she wanted to leave and she did so with grace. My husband expressed his wishes in his Durable Power of Health, and we followed his wishes. He died at home, holding my hand. We were all prepared, although his passing touched us all differently. My instant feeling was of relief, then anger that he had left me to face the world alone, then an overpowering feeling of the love that we had and shared. As he left the house for the final time, my youngest son laughed, “Mom, you promised Dad that he would leave this house feet first, and he just did. Out the door and down the stairs.” The loving laughter broke the sadness of the moment. We knew that we had honored his wishes, and that it was a good farewell. Then, as we all should do, we picked up threads of our lives. Husband and father, he is still very much a part our lives. Although not physically present, his love and teachings strengthen us and are a part of the complex tapestry as we continue our lives without him.
Caregiver 2001 – 2014