I went from being a successful professor to a retired person at age 63 because of dementia.
I couldn’t answer the questions the graduate students would ask. I would go into a classroom to teach courses I had taught for years and find myself unable to remember the content.
I couldn’t fulfill my work responsibilities any longer. I went from having a purposeful life to a life that had little meaning. I was bored, lonely and depressed.
Because I had to go on disability, my income was drastically reduced, and my husband Levi and I were forced to leave our southern California apartment overlooking the Pacific Ocean, moving to an affordable apartment in the desert. I was now away from my friends, my colleagues and our family.
I don’t know where I would be today if not for the love and support of Levi, my care partner. He was there for me every minute of every day, looking for ways to give purpose and meaning to my life.
After living in the desert for about a half a year, he said to me: “Would you feel more supported in Illinois than here in California?” Illinois is where I am from; my brothers and my father still lived there. After a few minutes of thought, I said “Yes.” We decided to move into the Chicago area.
This was a huge sacrifice for Levi. He was born and raised in California and had only visited my family in Illinois during the Christmas holiday. He would be leaving all of his family behind, not to mention the Californian weather. But his immediate response to me was, “Well then, let’s start packing.”
Since coming home to Illinois, I have been diagnosed with Alzheimer’s disease. We moved three times since coming to the Chicago area three years ago.
Each time we have moved, it was because I was lonely and bored — feelings I have dealt with since my diagnosis. Due to my lingering feelings of loneliness, Levi and I began searching for a senior living community three months ago and found one near Edgewater Beach in Chicago. For the fourth time since we moved to the area, Levi said “Well, then let’s start packing.”
Levi knows I will find the daily interaction I crave and a variety of activities to participate in with my peers in the senior living community. I also know that he will worry about me less.
Levi has given up so much for me. He is my rock. He stands beside me offering reassurance and peace.
Not only is Levi my husband whom I love dearly, but my care partner who works tirelessly to provide me the support that I need. He puts aside his own needs and always considers my needs to be his primary concern.
We have both become very involved in the Alzheimer’s Association at both the local and national level. We attend regular support group meetings for people with younger-onset Alzheimer’s and those in the early stages of Alzheimer’s. I also serve on the National Alzheimer’s Early Stage Advisory Group and the Board of Directors of the Alzheimer’s Association. Levi attends all meetings with me.
Levi has become an advocate for caregivers. He regularly attends speaking engagements with me, often participating in the event. He plans the travel and logistics, makes sure I get plenty of rest and looks out for my overall well-being at events.
I have hope and a purpose for living because of the love and support of Levi and the many opportunities the Alzheimer’s Association has opened up for me. My relationship with Levi has grown stronger with the challenges that we have had to face because of Alzheimer’s.
We have reason to hope. We both agree that I have Alzheimer’s … but Alzheimer’s doesn’t have me.
About the author: As a member of the Alzheimer’s Association 2018-2019 National Early-Stage Advisory Group, Tom Doyle hopes to raise awareness that people living with Alzheimer’s and other dementias are productive and vibrant, with full lives. He also wants to stress the benefit of early detection and diagnosis.
In Your Community