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The Long Goodbye – A Relative Dying of Alzheimer’s

Carol, a successful, independent writer with two grown sons, began to become forgetful and irritable in her late 70’s. Forgetting birthdays, not remembering where she parked the car, unable to do complicated tasks – all occurred more frequently. Reluctantly, she agreed to have a memory evaluation at a local rehab hospital. She was tentatively diagnosed with Alzheimer’s (no definitive diagnosis can be made until the person dies and their brain can be examined). Carol was upset about this and refused to accept the reality of her diagnosis, however, she did agree to move to an assisted living residence not, in her view, for assistance, but to be “less isolated” and have meals prepared for her. After much discussion, she agreed to sign a durable power of attorney form so that her sons could pay her bills. As her memory and her ability to walk deteriorated (Alzheimer’s, a neurological disease, also affects mobility and reflexes like swallowing), she reluctantly and sometimes angrily accepted home health care aides staying with her (at first part-time and, eventually, around the clock). She was fortunate enough to have earned enough money to be able to afford this care. Initially, she used the agency recommended by the residence but, later, hired another independent home care agency.

Her sons were able to find a local physician who specialized in geriatrics and was able to provide medications to try to slow the memory loss and to help her agitation and depression. Although the loss of her memory and her independence was very difficult for her, Carol also seemed to become less anxious and more at peace. More than ever before, she expressed her love for her sons and was able to quiet the life-long anxiety that had plagued her.

As she became no longer able to recognize family members, and her mobility and swallowing issues became more severe, her physician enlisted a local hospice agency to help with her care. This paid for her medications and additional medical equipment, and allowed for a nurse to evaluate and care for her weekly as well. Volunteers came by to visit, including one who played music and sang along with Carol to songs and hymns of her youth. With hospice, plans were made for whom to call and how to handle things when Carol’s condition got worse and death was imminent. Internet research was done and a local funeral home was selected to call when the time came. When her aide discovered that Carol had stopped breathing one morning, as did as instructed and called the family and hospice who streamlined the legal and administrative process following her death. Despite a long, slow, difficult illness, it was a peaceful end for Carol and her family.

Editorial comments:
Carol and her family could have benefitted from early contact with the Alzheimer’s Association, which has counselors who help guide families through the disease by suggesting resources, helping with planning, informing about expectations, and offering general support.

Other resources for families with Alzheimer’s are included here.  Assisted living facilities with a memory unit located in Westchester can be found here.

Information about what happens at the last stages of life and how to support a family member who is dying at home are available here. Home hospice services can be found here.

Practical things to know about the moments around a death in different settings are here, with additional information here.