Caregiving for My Mentally Ill Mother: I'm the One Who Picks Up the Pieces

Caregiving for my mentally ill mother comes naturally as I was born into the role. Growing up, my mom was very loving and cared for me and my three brothers, encouraging and supporting us in every endeavor. She has always been a healthy, active person and would plan camping trips for us on the weekends.

I have memories of winter camping in Vermont, going ice fishing and ice skating on the lake, and sleeping in our canvas army tent. We would use hot rocks from the fire, dropped into our socks, to keep us warm in our sleeping bags.

My father took a job across the country, and our family moved from Bolton, Connecticut to the Puget Sound area near Seattle, Washington. My mom drove our Volkswagen bus while my dad drove the moving van. They went through a great windstorm in the Dakotas and an unexpected snowstorm on Snoqualmie Pass.

Mom was competent, kind, adventurous and full of fun; that never changed when she became ill. She had lost a substantial part of her hearing from an antibiotic medication she took as a child, but that didn't slow her down.

I was 23 when she was diagnosed with schizophrenia. It took two years and many doctors to finally reach a diagnosis; it's unusual to be diagnosed at 50. In hindsight, there were some tell-tale signs, but because my mom is hearing impaired, it was easy to overlook when she misunderstood words and got mixed up.

This resilience my mom has to function as a hearing person through lip reading and piecing together information (and a pair of high-powered hearing aids) made it harder to treat her schizophrenia, I think. Nevertheless, she maintained normalcy, even when out of touch with reality. 

Schizophrenia is the term for a range of mental conditions that include delusions, hallucinations, paranoia and an altered concept of reality. Psychosis is a symptom of schizophrenia; when you lose touch with reality, you become psychotic. It can affect a person physically and mentally because the brain isn't thinking correctly; daily living activities are affected and safety becomes a major issue. 

The World Health Organization states, "schizophrenia is a mental illness that affects 1 in 300 people worldwide" (or 0.32%of the population.) The usual age for diagnosis is late teens to early 20s, with men often diagnosed earlier than women.

For my mother, developing these symptoms later in life made it harder for the doctors to pinpoint a diagnosis. She didn't want to be labeled as "crazy," and she didn't like the doctors to know what she honestly thought. As I said, she is very good at maintaining the "status quo" until she can't.

Medication management may include several trials of antipsychotic drugs before finding the right combination. The medicines can lose their potency and ability to control psychosis. After many years, my mom started electroconvulsive therapy; medicines were no longer working. This treatment was very beneficial for her; it essentially "re-booted" her brain. But it wouldn't last for more than a few weeks.

I was pregnant with my first child when she was diagnosed with bipolar schizophrenia and hospitalized in a psychiatric unit for the first time. She thought she was also pregnant, and when I informed her that couldn't be because she had a hysterectomy a few years before, "It's Jesus' baby, Jenni" was her response.

At that time, I was also finishing my last quarter in nursing school and on my psych rotation, learning all about mental illness and how to care for mentally ill patients. I don't believe in coincidence; this was pre-ordained.

My dad was so stressed, caring for my mom while working full time. She would be out buying things they didn't need (textbook manic behavior) and redecorating with money they didn't have, and Dad would have to return it all.

It took a toll on him, and he became clinically depressed, unable to care for her. She was just 50 years old. This was the beginning of the psychosis, the delusions of grandeur and the paranoia she would live with for the next 30 years. My parents divorced because of her illness.

I was caught in the middle, and as the only girl, just finishing nursing school, I was the logical choice as the primary caretaker. I understood the situation's complexities and was willing and able to do the job, unlike my brothers, who were wide-eyed and afraid of what was happening to our mom.

I found her housing in a group-type home for people with mental disabilities; it was a lifesaver for our family. She lived with three other women in one of four houses on a cul-de-sac. There were case managers on staff every day (except for weekends) and a number to call for issues at night. She was given her medications daily and had assistance with all her mental health needs. This lasted for close to 10 years.

As her schizophrenia progressed and medications stopped working, her psychosis was constant. I remember she kept a bag packed at the foot of the stairs by the door because Jesus was coming, and she was the chosen person to greet him.

She was to be his "event planner," so to speak, and host him on his arrival. There was no changing her thought pattern; she would listen to me and say, "Oh he's not coming today?" when I would tell her she didn't need to worry. This was very anxiety-producing for her. The paranoia never left for very long.

Religious delusions are common in people with schizophrenia, as are delusions of grandeur and telepathic thinking. She has had all these, and the paranoia has been ongoing throughout her illness. When she became too mentally unstable to continue to live in her group home, she had to live where she would have 24-hour care.

She had climbed out on the roof one night after her cat, suffered from manic mood swings and left the house alone. She needed that 24-hour care and was hospitalized for two months.

I have found many Adult Family Homes for my mom to live in over the years, always trying to have her in the best caring home environment available. Unfortunately, nothing was great; she didn't fit the population in these homes. Wheelchairs abound, with dementia and Alzheimer's debilitating many of her housemates. Institutional psychiatric facilities were out of the question, and no mental health housing was nearby.

As a nurse, it has been hard for me not to be over-judgmental about the care my mom should be receiving when I cannot do it myself. I have moved her many times, much to the dismay of my family: "You should just leave her there; she is being cared for, has a roof over her head and good meals." I wouldn't listen; my standards are high because it's my mother.

Her caregivers often had no idea that she was paranoid and delusional; she waits for me to show up to the place she's living now to confide in me. I am the "safe person" she can unload on, sometimes dragging me out the door to my car, squeezing my hand so hard, "let's get out of here, Jenni, they're coming to get me," she says, with wide-eyed fear.

Chocolate milkshakes are a staple, and the local lake, where the kids play and the ducks swim, is our usual destination. She wants her M&M's to be available for daily snacking, word search puzzles and coloring pages. She did adult coloring book art long before it was a "thing." I would buy her frames at the dollar store and she framed her work and gave it to people.

The good days we have together are cherished. My mom and I are as much friends as we are mother and daughter, caregiver and caretaker. We love each other dearly, and I never treat her differently because she is ill; I care for and love her more.

All I ever want is for my mom to be happy, enjoy life and be at peace. I get that sometimes. She is a blessing, and her love for me is enough.

Jenni Binford, RN, is a nurse writer with over 30 years of experience in patient care. She is passionate about writing health content that encourages readers to live their best lives. Her website is JBinfordRNwriter.com Read More