wheelchair womanWhen one is given a terminal diagnosis often their perspective on life changes.  Some say that if there is a gift to be found in such devastating news, it is the opportunity to counsel loved ones to get their lives in order, spend time with those that matter and deliver sincere goodbyes.

Alicia married her high school sweetheart Joe in her early 20s and became a mom the next year.  While it was a financial strain, she felt it important to be home with her son Steven.  She stretched her grocery money.  She made baskets of homemade goodies as Christmas gifts.  She waitressed at night so her husband could be home with their baby.  About five years after Steven’s birth, their daughter Sara arrived.  Alicia continued to put her family first.  Once the children were in school, she went to college and became a nurse.  She worked nights because that worked best for her family.  At the age of 51 Alicia was diagnosed with ALS/Lou Gehrig’s disease after being symptomatic for two years.  Her prognosis was 3-5 years from onset of symptoms.  Steven lived in another state, had two young children and was in the midst of a messy divorce.  Alicia and Joe had provided them with financial assistance and would make trips to help Steven care for his children.  Sara was a struggling actress, working part-time jobs and still living at home.  Joe was in a new job and making less money.  Alicia could no longer work nor contribute to the family income.

Perhaps because she had been a nurse Alicia was extremely pragmatic about her remaining time.  As always, setting her family straight was her first priority.  She knew that she had given her children a lot and done much for them, but when she left this world she wanted them to be on solid ground.  There would be no more financial bail outs.  With their income significantly reduced while anticipating the eventual expense of home care, she needed her children to be financially independent.  She was strategic about her plan.  The first yet simple move was removing her children from her cell phone plan.  She worked with Sara, helping her switch her priorities so that acting was a hobby.  Sara found a full time job in her field with potential for growth.  She enjoyed it and still had time to perform in local productions.  Sara implemented the budget she and Alicia prepared with plans to buy her first home in a few years.  She was aware that Steven was in denial about her rapid decline, thinking she could still cook, clean and watch after her rambling grandbabies when she visited, even though she had to use an electric scooter just to get around.  She worked with Steven to develop a budget, and a plan for childcare and housing when he separated from his wife.  Alicia also shared her wishes for her children with Joe knowing he would continue to guide them.

Alicia also wanted to see the world with Joe.  The dream house was no longer important so it was sold.  The sale helped fund travel and a smaller but suitable home.  She ticked off her travel bucket list seeing the wine country, traveling to Europe, taking a cruise and some family beach trips.  Then she returned to her now smaller home where orchestration of her plan continued.  She worked with family and a home care agency to assemble her care.  She brought in hospice to keep her comfortable.

Much of Alicia’s family lived nearby which meant many large family gatherings.  Prior to her diagnosis, Alicia didn’t necessarily relish those times.  There were many children running around at family get-togethers and so she usually kept her visit to a few hours.  It wasn’t until she knew her death was nearing that she really started to cherish those family times.  She made amends with an estranged cousin.  Gatherings were full of laughter and storytelling, as well her favorite foods.  Everyone doted on her so she was aware that she was much loved.  Alicia now acknowledged her loved ones special occasions more purposefully carefully crafting meaningful notes of what they meant to her.  She knew the time would come when she would not be physically able to write or even speak, so she shared her sentiments frequently.

While Alicia suffered much she said she was grateful that she was able to leave this world at peace knowing she had done all she could before leaving her loved ones.

Originally appeared on: http://www.homecarechoice.com/home-care-articles/terminal-diagnosis-gift-saying-goodbye


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Janet Faraone founded a non-medical, senior home care company in 2000; back before Home Care was a household word. As a pioneer in the industry, she learned the intricacies of helping families navigate the needs of seniors and opened a care management division. After more than a decade of helping seniors, she and her husband, Nick, sold their business to start a new chapter. When she’s not hiking or skiing with her family, or volunteering in the community, she’ll share her stories in the hopes that they will bring comfort and insight to caregivers and seniors.