This month, I am going to share this platform with our Chief Medical Officer Dr. Melissa Tepe, and her husband Michael McFarlane. Michael recently shared his experience as a caregiver for his mother Carmen, who is living with Alzheimer’s Disease. More than 6 million Americans are living with the disease, and it affects everyone in that person’s life. We stand with Dr. Tepe and her family, and all of you, who are facing this life-altering challenge. Here is Michael’s story:

My mother’s name is Carmen. She came to this county via England from Jamaica in 1968, and took residence in The Bronx, NY. My mother had me in 1973. For the first 5 years of my life, my mother raised me as a single parent with minimal family support. Over the course of the next 20 years, my mother filed with the U.S. Embassy in Jamaica to have six of her siblings and most of their children come to the United States. My mother practiced geriatric nursing for approximately 40 years, ending her career in 2007 as an Assistant Nursing Home Administrator. 

In December 2012, my wife and children went to New Rochelle, NY, to spend Christmas with my mother. My cousin came over to visit. I had prepared 3 pieces of salmon and my mother stated that she wanted to prepare brown-stewed chicken. I suggested to my mother that since my wife and I were going out that evening, that all of us simply eat the salmon and call it a day. My mother insisted on my cousin Allison taking her to Costco to buy the chicken. My wife and I left to visit with friends in Manhattan between 4 and 5 PM. When we returned home at approximately 11:30, I asked my mother how the brown-stewed chicken turned out. She stated that she did not prepare any chicken. I reminded her that she practically begged my cousin to take her to Costco to buy the chicken, and my mother stated again that she did not make any chicken. I went to the refrigerator and noticed that the unused chicken was in the refrigerator and not in the freezer, where my mother would normally have placed it. I pointed this out to my mother, who said that she made a mistake. I then took out a ceramic dish filled with brown-stewed chicken and showed it to my mother, who listlessly replied, “Oh. I must be tired.” 

That was the moment that I knew something was wrong. 

My godmother, who thankfully lived next door, was able after several failures to take my mother to a medical office to see Dr. Gobani. In October 2013, Dr. Gobani wrote her assessment of my mother’s level of functioning – mild Alzheimer’s Disease. At this time, my mother was still driving, and working part-time as a PRN shift supervisor at Golden Crest nursing home. My wife contacted the administration at Golden Crest shortly after we received the report to inform them not to schedule my mother for any more shifts. Between the end of 2013 and June 2014, I continued managing my mother’s illness from St. Louis with support from family members. All were living in New York and checking on my mother as much as they could. In June 2014, I went to New York. At this point, I was leaving my job approximately every 3 months to spend a week with my mother in New York. My mother was radically thin. By June 2014, my mother had a fixed delusion that a relative was breaking into her house and tying up her belongings, particularly her shoes, in plastic shopping bags. This same relative was also placing food in her refrigerator to poison her. By June 2014, I was speaking to my mother on the phone almost every other day. This delusion caused my mother to become distrustful of my godmother, who was a longtime childhood friend. They knew each other as children in Jamaica, and their fathers were dear friends. My mother would call me and say hateful things about her best friend, whom we had known all our lives. My godmother called me weekly to express concern over my mother’s mental decline. 

On December 26, 2014, I got a text from my mother’s friend that my mother’s living conditions, particularly her bedroom, were bordering on reportable. Now I knew after being in intermittent communication with New Rochelle Police for over a year that unless my mother was a harm to herself or others, there was no way to have her committed either psychiatrically or emergently.  

I was lucky to have my cousin visit weekly on Saturdays. My mother’s hospitalization in January 2015 was one of the most physically, emotionally, and psychologically taxing experiences of my life. I returned to New York in February 2015 to take my mother to her cousin’s funeral and again in March 2015 to coordinate services for my mother’s stay in Assisted Living. In June 2015, my wife and I went to New Rochelle with our children to empty out my mother’s house. Helping my Mom through Alzheimer’s has actually strengthened my determination in the face of overwhelming adversity. I can honestly say that I don’t fear anything related to my mother’s illness in this moment. I don’t even fear my mother outliving her money. Because those 3 and a half weeks in New York reminded me that all things are possible where people are bold enough to be faithful.  

Assisting your loved one with Alzheimer’s will probably stress you out at work, and school. It has definitely decreased my patience with my children and made me less of a good husband. But my mother is not suffering. She doesn’t have a full comprehension of the plaque building up in her brain, or how her brain is gradually shrinking over time. The term “diminished capacity” does not apply to her, if you were bold enough to inquire of her. She’s simply happy to have a small measure of peace each and every day. She no longer clutches a purse filled with a hammer and scissors. She feels safe. She’s happy that we are no longer separated by 1000 miles of geography. She’s happy to have her daughter-in-law. She’s happy to have access to her grandchildren. My mother finds comfort in singing her hymns in our car when we pick her up. My mother is healthier because she’s still teaching me and reminding me to love. And how love conquers fear. 

Alzheimer’s disease over time will begin to disinhibit the person afflicted. This means the frequency with which they have thoughts that they DON’T share also diminishes over time. So, things my mother would never have shared with me 20 years ago, she has no problem sharing now. One day we were walking into the dollar store and my mother said, “You know, Michael. I was so glad when I had you because I was so alone before you came.” 

I know that if my mother lives long enough, she might not recognize who I am. She might forget how to swallow and have to transition to a soft palate diet. And none of that matters. If you have someone that you love who is living with Alzheimer’s disease, recognize that it is silly for you to suffer privately while they are not. My mother lives with Alzheimer’s disease. She doesn’t “suffer” from it. There is a simplicity in her life that is built on the bedrock of her faith. Walking through the remainder of my mother’s life with her and my family has taught me that although I am thankful for the privilege of leading this hospital, in the grand scheme of things it doesn’t matter. I used to rush toward complexity because overcoming complex challenges and issues gives me a great deal of personal satisfaction and accomplishment. My mother is teaching me every week that although ambition is fine, it doesn’t necessarily breed contentment, much less inner peace. For me, determination trumps ambition. If you are loving someone with Alzheimer’s disease, do not squander or diminish who they are today. Do not waste your time lamenting over the loss of who they were before. All the qualities that made you love them in the first place continue to make them who they are. As your loved one changes, you too must change. And from your change will come your inner growth. If you don’t change or continue to look back at what used to be, you will depreciate such invaluable time, and despair needlessly for them.  

Michael McFarlane is the CEO of Hawthorn Children’s Psychiatric Hospital. He lives in St. Louis with his children and wife, Dr. Melissa Tepe, Chief Medical Officer with Affinia Healthcare.