In celebration of National Care Givers Month, we’ll be sharing some caregiver stories that express the wide range of thoughts and emotions, some happy and some sad, that can come with being a caretaker. Sometimes being a caretaker can be an extremely challenging and thankless job, but other times, it can also be extremely rewarding and teach us life lessons that we would never have otherwise learned. But mostly, these people are sharing their stories, caregivers and care receivers alike, so that others like them can know that they’re not alone.
Today’s story comes from Caregiver.org and is told by Michaele O’Leary-Reiff
“Hello, I must be going…”
“Hello, I must be going …” read the note addressed to me and taped to the door of Allan Reiff’s office in the Philosophy/Humanities Department at our local community college. The year was 1983, and little did I know then, the dark truth hidden in those seemingly light-hearted words; the man I would eventually marry would be taken from me all too soon by the ravages of Alzheimer’s disease.
We had met the year before. I had returned to school to get my license as a registered nurse. I needed some electives so enrolled in Allan’s philosophy class, which had been highly recommended. On the first day I was riveted to his words, when he said the world would be a more peaceful and equitable place if governments were run by Romanian gypsies and ballet dancers rather than politicians and dictators. Soon we were talking after class, meeting for coffee, and having long conversations about movies, books, politics, our children, and the meaning of life.
Ours was a mid-life relationship, both of us having been previously married. Between us we had six children, his two and my four. It was an exciting time for us. In 1988, we decided to live together, bought our home in 1990 and married in 1994. We had planned for many years of financial stability and looked forward to traveling, retirement, being surrounded by grandchildren, and growing old together.
In 2003, after 36 years of teaching at Chabot Community College in Hayward, Allan decided to take his retirement with the intention of continuing to teach part-time. He was 70 years old. A few months before, I had begun to notice some concerning memory problems. He would occasionally get lost while driving to familiar places or forget where he was going and have to call home to get directions. Late spring, we went away for a three-day weekend, and the day we returned, there were numerous phone messages from the department secretary and many students noting that he had not shown up for a final exam that morning. He had completely forgotten the scheduled examination.
In the fall, we went on a long-planned trip through France, Spain, and Italy to celebrate Allan’s retirement. Immersed in different cultures and languages, he became increasingly confused, unable to find his way around. He had trouble ordering food, navigating trains and subways, even packing his suitcase. Upon returning home, he began having panic attacks while driving on the freeway, got lost more frequently and forgot how to do simple household tasks. I could no longer deny that my brilliant husband had a serious problem with his cognitive functioning.
In November, 2004, we saw a neurologist at California Pacific Medical Center, where, after extensive testing, Allan was given a diagnosis of early stage vascular dementia. He was devastated by the diagnosis, terrified of losing his mind, and we both spent the next year in a state of shock. At first, Allan spent all his time reading everything he could on dementia and Alzheimer’s disease: books on boosting brain power, detoxifying his body, and he read over and over, Final Exit, a book on how to take your own life. He begged me to promise that I would help him end his life before he completely lost his mind and ended up in a nursing home. He was scared, angry, sometimes flying into a rage over minor upsets. Life appeared to be spinning out of control.
Life felt tenuous, and we had to plan for the future. We saw an elder law attorney, created a family trust, spoke with our children and carried on as best we could. Eventually, we created a new “normal,” addressing each obstacle as it arose. Over the next few years, Allan had to give up driving and finally, he was no longer able to teach, major losses for him.
By 2007, I was deeply stressed, feeling overwhelmed and trapped in uncertainty. I had heard about Alzheimer’s Services of the East Bay (ASEB) through Family Caregiver Alliance and was told about their early stage support group for people with dementia and their caregivers and families. This was the beginning of a newfound source of support and caring. Allan began attending ASEB’s Adult Day Care Center and grew to love the staff and the student volunteers from U.C. Berkeley, who talked to him about their classes. Eventually, he went there most weekdays, giving me (with the help of two home caregivers), the respite I needed to survive, manage our household, and maintain a semblance of my own life’s work and goals.
As the years wore on, I sadly and helplessly watched my husband’s slow progression to the late stages of dementia. Allan left this life on June 7, 2014. He died in his sleep at dawn. In reflecting on his wisdom, his bravery, and all his wonderful contributions to the world, Allan showed me how one can adapt to and accept with grace what life brings. He will forevermore be my teacher.
For the original story, click here.