Caring for the Unraveling Mind
by Theresa Frangiosa
A two-hour car ride feels like 2 days when you have the same conversations about the weather and traffic, over and over. I have long mourned the loss of my mother as a friend and confidant. At 88, she is remarkably still mobile, but has been suffering from dementia for the past 8-10 years. It is difficult to know when it started; she was retired in Florida and I had no idea what challenges she faced as her problem solving skills diminished. When Alzheimer’s Disease or Dementia strikes, it often goes unnoticed for years, as smart people hide the symptoms well. My mom is highly social and can bluff answers to questions like a pro. A convincingly real conversation is completely fabricated, but she believes it.
Initially, my sister and I were in denial. Then mom’s friend called to tell me she was leaving on the stove and the faucet. My husband and I began the task of building an addition on our home and in 2011 it was time to move her in with us. This was an incredible adjustment and a real jolt to our active and free lifestyle. My life is no longer my own. In fact, caregivers are commonly considered to be the second victims of the disease.
It’s easy to forget that Alzheimer’s is a fatal neurodegenerative disease when the pace of decline can be so gradual. I’m happy that mom remains positive and I know many people have complete personality changes with Alzheimer’s progression. Her love of life is what keeps us motivated to keep her healthy and vibrant at home; I think that moving her into assisted living would trigger a real decline for her, so it will be a last resort for us. I am glad that she still remembers me but I have many friends with loved ones where that is not the case. Guilt can really take hold of a caregiver, whether she keeps her loved one at home or not. I look critically at every move I make. I’m not paying enough attention to her, my husband, my job, myself.
In fact, caregivers face a host of stressors as they face a continual gauntlet of new challenges with their loved one’s decline. She left on our stove, and we had to search for a stove guard to automatically turn it off. She started roaming at night and we had to track her movements. Lately, she is chewing her food and not swallowing it and I have had to research alternative nutritional approaches. It is incredibly heart-breaking to witness your loved one unlearning how to live.
We are fortunate to have caregivers who provide respite. To take a business trip or a getaway weekend requires planning and coordination for her care. Not so good for my social life. Beyond the constant burden of managing an evolving set of complex problems, caregivers experience significant healthcare problems including stress, anxiety, depression and physical comorbidities such as cardiovascular disease. This is all leading to a societal economic burden that is currently estimated to amount globally to $600 billion as more caregivers must sacrifice their careers to be at home or as they place their loved ones in assisted living. With the aging of the baby boomers, this burden is expected to more than triple by 2050. It is difficult to imagine how we will cope as a society. Moreover, less than 1% of the dollars spent to alleviate the burden of Alzheimer’s Dementia are spent on research.
Faith, family and friends are my support system and I focus on exercise, meditation, diet…whatever will help me to stay healthy and resilient. I ask that you consider someone around you that may be stressed as a caregiver and ask them if they need anything or just give them a hug.
I pore over information on treatments for dementia with the eye of someone who spent 25 years working in Pharma. My mom is not on any drugs and I remain convinced they will do her little good. We still know very little about the different patient types, the course of their disease progression and the drivers of their decline. As novel imaging approaches enable us to peek at the brain and detect changes long before symptoms occur, the field is being re-energized. Asymptomatic and healthy individuals like you and I will need to bravely volunteer for new research so that the course of the disease can be well understood.
The work of Orion Bionetworks is a critical component to filling remaining gaps in our understanding through dynamic disease modelling approaches. I am hopeful that these fundamental learnings can identify newer and better drug classes that will be life altering for generations to come. I’m sad that my mom won’t be helped by these ongoing efforts but hope that my generation will benefit so that our children won’t have to experience the same dilemmas regarding care and responsibility. I wouldn’t wish it on anyone. But I love my mother and wouldn’t have it any other way.