February 25, 2020 § 2 Comments
My sweet husband passed a year ago and so many words now have meaning. His spirit lives on in my soul. I am eternally grateful for the light of compassion, tenderness and love that he brought into my life. Although it has been a year of feeling extraordinarily vulnerable, I sense his presence and can move on, with courage.
Only recently, I started to think that he would be proud of me, picking up my life, making a difference in this lifetime, knowing that I am not done. I want my life to honor his memory, in humility and integrity. It takes courage to hold this together while longing to be in his loving presence, his hand was always there for me. My heart is broken and I suffer the pain from loss. This morning, while meditating, I saw him sitting opposite me, smiling and I did not want to come fully alert.
He lit up my heart, my life with happiness from our first date to the end, feeding him mashed/processed chicken and vegetables from a spoon in a dementia care facility dining room. I never didn’t want to be his wife.
I am filled with many simple memories from adult day care, before he entered the facility in 2017. Greeting him, arriving home on the shuttle bus, clutching a prize he had won in a game during the day, a new small calculator in hard plastic packaging, special for me. I always asked him if he had a snack that afternoon, knowing what he would say but enjoying watching him trace a circle in the palm of his hand saying “small things,” maybe cheese or Goldfish crackers.
Memories of his generosity and kindness will always nurture me.
I promised him often that I would always love him. He used to say this to me too when he could speak, when he had language, and I knew he meant it. Every time he heard this, he would kiss me. I wanted him to live forever so I could claim that kiss, I would tell myself, as dementia continued to take over his brain’s capacity. This yearning in a strange way helped me to have hope to go on. With each day, I was witness to his decline, that I was losing him. This sadness was always with me until it turned to grief.
Today I understand that the gift of love that I experienced for sixteen years will be treasured as long as I live. I will always miss him and what we meant to each other. In memory, our loved ones live on. I am forever grateful and humbled by the process. My difficult childhood and his previous broken marriages now have a proper place in the depths of our personal histories, far from the passion of our life together. This is the power of love: sustained, compassionate attention.
As he descended into dementia, I was his only caregiver. Even while the demands of taking care of him at home were overwhelmed by nocturnal psychotic symptoms, I would not stop trying to provide some normalcy to our lives until his geriatric doctor intervened. She said with the medication she prescribed, he was no longer safe at home, walking around steps in the dark, listening to the voices in his head. She said that he needed 24 hour care with medical supervision and recommended a nearby facility. The day he moved to that place, even though it looked like a hotel in Provence, was one of the worst days of my life. On that first night, as we kissed goodbye, he asked me where I was going, I said home and he told me he understands.
In Judaism there is a memorial prayer, El Malei Rachamim, and it is explained this way: “Our loved ones live in our broken hearts. Their acts of kindness and generosity are the inheritance left behind. We feel their absence; but the beauty of their lives abides among us. As it is said, The name of one who has died shall not disappear. Our loved ones’ names – and their memories – will endure among us.”
“So long as we live, they too shall live, for they are now a part of us, as we remember them.”
February 25, 2020 § Leave a comment
Love and a Caregivers Journey
I am writing this blog post to share some comments about how we, my late husband and I, were treated by three of his adult children, as a result of fractures in family relationships that happened long ago, at a time before he knew me.
There is a lesson here about forgiveness and I want to share our personal story.
We frequently attended family events and my husband always looked forward to an annual summer visit to their state from Virginia. He was grateful for their morsels of kindness. He loved being Grandpa and adored playing with the grandkids, sending gifts on all occasions and always calling to sing the birthday song. When we met in 2002, he was seeing a psychiatrist every week to learn better parenting and communication skills. I often saw his handwritten scripts, what he wanted to say to his kids on the phone when he called, to get the words and sentiment just right. He did this, for many years, until he could no longer write or drive a car, on his own, to appointments.
After the dementia diagnosis in 2013, several adult children, two daughters and a son, did not want to have anything to do with their Dad. They chose a different path, turning their backs on empathy, lacking compassion and the opportunity to grow in wisdom.
Forgiveness can change the direction of one’s life. It is not forgetting, excusing or condoning. Rabbi Harold Kushner writes “Forgiveness is something you do when you’re strong enough to let go. When you are strong enough to say, you, because of what you did to me, you don’t deserve the power to be the ghost inside my head.”
The Son The last time I had any contact with his only son was about three years before his Dad died, while my husband was living at home. One day, the rude and impatient son called the house, spoke for seconds with his Dad and when I asked what happened, his Dad just shrugged. Knowing how pleased he was to hear from his son, a rare occasion, I dialed back and asked if everything was alright and in an angry voice, I was told, “I told him I would call back, I just got home from work” and click, he hung up. He never contacted him again. Now I’ve heard that his wife divorced him and took the children far away, giving his son an opportunity to learn about loving kindness as a long-distance parent; what his Dad tried to do.
Two Daughters After the diagnosis, we traveled to their area and arranged a family meeting to develop an emergency plan should I suddenly die or become disabled and not be capable of taking care of their Dad. I told them that we were looking for a dementia care facility in their area. While Dad sat beside me, both daughters told us that under no circumstances would they be responsible for his care, for even just one day, and would not help move him into a residential place. These women could not have been more mean-spirited.
The oldest daughter, now forty-something with two children of her own, said she is still very angry at her Dad for two childhood experiences. Clearly distressed, she told me that on one occasion her Dad had promised to drive her to a football game but instead gave a “a stranger” on his commuter bus home, a lift to pick up her repaired car and arriving home too late, she missed the game. On another occasion, he ‘punched her arm’ in anger and her next younger sister said she remembered this and so, both women, made spontaneous decisions, to never care for their Dad.
The oldest daughter does not remember when she was about 27 years old, she had moved cross country and found herself in an abusive boyfriend relationship, and she called her Dad to save her and bring her back to where she had been living. I know this is true because I found the airline receipt among papers he left behind.
From my sixteen years of knowing him, he was always patient, kind, considerate, gentle and soft-spoken. I never saw him angry, with me or anyone else, not once! I did not make him this way, that was his nature.
I do not condone physical abuse, but I believe that, in that circumstance, something must have happened. Only his first daughter knows the truth. She had a part in this. Knowing that your Dad was about to lose his mind, and after many heart-felt apologies, don’t you think that twenty years later he could be forgiven? By holding on to those one-of-a-kind childhood memories where she was disappointed and hurt, influences who she is today and will be in the future. They are their ghosts.
Forgiveness demands courage. His daughters are cowards. Their relationship with their Dad did not have to end this way. No matter how many times their Dad apologized was not good enough for them. They showed us that they are still providing shelter for these memories, frozen in time. They had the power to heal and chose the other way, to turn their backs. It is their loss for these memories cannot be resolved with a deceased parent. They never saw their Dad as a real person, with strengths and weaknesses, just like themselves. They lost that chance to make peace. We do not always get it right but only by stretching our capacity for openness and authenticity, do we grow in wisdom.
Their father deeply loved them. Sometimes love is not enough but he’s gone now and the chapter is sealed.