Snowbird Caregiver Provides Inspiration

If you are presently a caregiver, you need not look further for inspiration than Amy Spiegel, a 47-year-old office manager at New York Life, who has served as caregiver to her father, mother, and mother’s best friend. Amy exemplifies the strength and conviction that those dying have the right to die with dignity and according to their wishes, as well as the heart to appreciate the last moments of a loved one’s life. In the case of her mother, caregiving led to closure in a truly poignant moment.

Amy was able to arrange for a sabbatical in 1999 to take care of her ailing mother. Because of the Family Medical Leave Act, her employers had to allow her to take time off. Amy would work an hour extra every Monday through Thursday and get Friday off in order to spend the weekends with her mother in the suburbs of Washington, DC. She did this for three months before she went down to live with her for the final eight weeks of her life.

Among her duties was nursing, where she took care of all of her needs especially when she was bed-ridden. She made arrangements to get her mother to the doctor since she did not have a driver’s license. And perhaps most importantly, Ms. Spiegel arranged for people to say good-bye to her. She was her mother’s companion and Amy has fond memories of the time she shared with her mother.

“Everyday was great,” she exclaimed. “I came from a very formal New England family and my mother never told me she loved me and never held me or touched me. Then, we had a moment where I ran in to tell her something I was excited about during her favorite TV show. She said ‘Not now, wait until a commercial.’ I went into my bedroom and felt bad. Then the commercial came on and she said, ‘Amy, come here. I should not have done that.’ I said ‘Well, I shouldn’t have bothered you during your show.’ Then she said, ‘Come here, I am going to do something I’ve never done before.’ And she hugged me and told me she loved me,” Amy told us, her voice cracking with emotion. Amy’s mother encouraged her to take time to herself and she stayed in a hotel so she could get sleep because her mother had to be awakened at 3 a.m. to have her lungs cleaned out with a nebulizer.

As caregiver, one must deal with how to communicate with your loved one about his or her impending death. Again, Amy’s experience with her mother may be familiar to the caregiver. “I think on January 9, 2000 she asked me what was going to happen. She was fearful even though she had been told she was terminally ill. Then, when I put her in hospice, she said, ‘Oh, good God. You only go in hospice when you are going to die.’ She still did not have it registered even though probably seven or eight doctors told her she was terminally ill. She kept on saying, ‘No one is telling me what’s going on.’ So when I told her she was going into hospice, she sort of gave up the ghost to use an adage. On January 9th she asked what was going to happen, so I had to explain to her what was going to happen,” Ms. Spiegel recalled. “I said, ‘Mom, you’re going to have some good days and some are not going to be so good.

The ones that are not good will start outnumbering the ones that are good. You’ve provided for Jane, Judy [sisters], and me what we could never possibly repay, and it is the least we can do to make sure your time remaining here is as pleasant as possible to show you how much we love you.’” These emotion-laden situations can make the whole caregiving process worthwhile.

Ms. Spiegel did have some trying moments, however, when she had to balance her work with caregiving. “I got very depressed. It made coming to work rather difficult because I was just emotionally drained,” she explained.

Ms. Spiegel has developed strong opinions about end-of-life issues. “I think hospice is very underserved and it is necessary to help people die with dignity without pain. I think it’s a privilege and it shouldn’t have to be a privilege. Three people I’ve loved the most in my lifetime [mother, father, mother’s best friend, Miriam] have died with dignity. I feel grateful that they hadn’t been hooked up with tubes.” Ms. Spiegel also had something to say about the psychological aspects of not allowing artificial tubes and machines. “I have guilt that maybe I killed them, but I have to remember it’s not what they wanted. And if they can’t get up and go around and communicate, that’s not life,” she added.
 

Amy has lived in New York City for 19 years, 14 of which she has been a couple with her boyfriend, Bob, who has a second home in Pompano Beach. She has been coming to Florida since 1995 and looks forward to her visits here. She plans on retiring in Florida. 
 

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