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On the Edge of the End: How I Became My Husband’s Caregiver Until His Death

The journey to the end of one’s life is seldom planned. It can be abrupt without notice, or you can be issued a death sentence and choose to ignore it and live life to the fullest. The latter was our choice for my husband, Tom, who eventually accepted his end with grace and dignity.

It started with a tick bite, Lyme disease, an ALS verdict and finished with Hospice. The road between was long and windy just like the Beatles song that leads me to your door. My path and role was one of caregiver for the love of my life to make him as comfortable as possible and to be his advocate.

Merriam-Webster says that an advocate is:

  1. One who pleads the cause of another; specifically, one that leads the cause of another before a tribunal or judicial court.
  2. One who defend or maintains a cause of proposal.
  3. One who supports or promotes the interests of another.

When it came to life and death decisions, there was no thinking involved; you just had to react and do what needed to be done, immediately. In the beginning of Tom’s illness, the decisions related to doctors, hospitals and medical options. In the middle, it was all about additional medical help, equipment and food changes needed to assist him and keep him comfortable. I tried to keep it fun and interesting for our adventure together.

On our third anniversary, when Tom could not swallow whole foods, we had a beautiful steak dinner. Mine was a thick New York Strip steak; his was ground finely with mayo, spices and love shaped into the form of a New York Strip, his favourite. It was delightful.

Toward the end of Tom’s life, the decisions became harder and the options fewer; where to die. It is incredible to me that we never discussed this important decision. We covered everything else except this small detail. In retrospect, I think Tom did not know how his end would come, and he decided to leave it to chance, or me.

They say that home is where the heart is and that is where we chose to be. Hospice was a godsend of support, information and kindness that will never be forgotten. They offered volunteers to come and help bathe, massage or offer religious support, and there were also private duty nurses who could care for Tom and administer the drugs to keep him comfortable and bring him to his end. Our choice was very clear: this was the time that required only me to comfort and nurse him. I read about the end of life and the stages that one would go through so that I could be prepared and know what to expect.

Our last five days together were spent with me talking about our beautiful, short life together, remembering all the good times while I could see the life draining out of him slowly but surely. It was as if a balloon was deflating with a slow leak. Hospice informed me that even in a coma state he would still be able to hear me. I took advantage of that with Beatles music playing in the background and my words of our love to calm him into an untroubled dream to remember always.

The last and most important thing to do was to give your loved one permission to leave. I finally accepted the diagnosis of ALS and wished him love and happiness over the edge of the end. Permission granted. There was a windstorm outside with a cool breeze. I told Tom that the angels were here to take him to a better place. It was okay to go with them; they would take care of him. He would always be in my heart and by my side. He agreed without a word.

Jo Ann Simon, a corporate executive, is a lifelong Nutmegger, living in various locations in the state of Connecticut. She is constantly exploring the world, including her favourite country, Italy. When she is not travelling, Jo Ann loves spending time with family, friends and her seven grandchildren. Her day job is running an Electronics Contract Manufacturing Company. Painting fine art, gardening and writing fill in the blanks of her life. Palm trees are essential in her personal landscape with beaches to match and to sink her feet into the soft sand.

Connect with Jo Ann Simon on TwitterFacebookInstagram and her blog. To learn more about Jo Ann Simon and her book, Rose Colored Glasses: A Memoir of Love, Loss, Hope, click here.

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