I am the only child of an only child who lives in an assisted living facility thousands of miles away. I unofficially diagnosed Mom with obsessive-compulsive personality disorder after struggling for years with a relationship fraught with guilt and frustration. Returning to her home felt like a scene from the movie Big. I could feel myself reverting to my childhood, my clothes becoming too large, while feeling impatient and a sense of futility.
It’s difficult enough to care for a frail parent when their health is failing. However, the added OCD personality, with its micromanaging, rules, and demands, tests patience beyond compare. For instance, when Mom insists on bringing her “purse” into a restaurant—a large plastic tray so she can see all the contents—and wants me to carry it for her, I can feel my anxiety rising. No, I will not help you out of and into the car, get your walker, take my purse, and balance your tray on my head.
Once, when driving her to surgery, she insisted I pull into Auto Zone so she could talk to the manager. Why on Earth I still assume something normal is going to occur, and I comply with her request, is the eighth wonder of the world. When I realized she had asked the manager to clean a streak off the windshield, my face turned red with anger. In these moments, my education and training vanish, replaced by a “Are you kidding me, Mom?!”
Mom has a caregiver who comes to her home once a week. I can sense that something is off, and the caregiver confirms that Mom is acting more confused and has lost a lot of weight. Mom has been paying for an independent living apartment, but she refuses to move in until she goes through all of her paperwork.
Mom’s paperwork has been a living, growing beast since I was in elementary school. Her OCD personality disorder prevents her from getting rid of paperwork, which fills boxes on the kitchen floor and in the garage. There are piles, containers, and boxes covering every surface of her counters, including her stove.
I was at her house two months prior, helping her recover from hernia surgery. That was her third surgery in the last two years. I booked a flight from South Dakota to Phoenix, and when I arrived at her house, I was shocked by how my mom’s cognitive and physical health had deteriorated in just eight weeks.
Mom was having trouble getting out of her chair and walking; she was stooped over and moving very slowly. She had terrible edema in her lower legs with seeping wounds and weighed barely 98 pounds. She was confused, repeating issues obsessively. At 2 a.m. one morning, she opens my bedroom door and demands I drive her down the road to get a locksmith’s number off a billboard. She needs to make another set of keys for her blazer.
After swerving and causing another driver to total their car and later running into a curb and blowing out her tire, I insisted that she give her keys to her caregiver, and she complied. However, she no longer remembers forfeiting her keys. I explained it was pitch dark and reminded her that her caregiver had the keys. Mom was relentless, insisting we get that number now.
After what seemed like hours, I finally convinced her to let me get some sleep, and we could discuss it in the morning. I couldn’t go back to sleep and started assessing the situation. Her poor memory, low weight, failure to pay bills, and a few falls indicate that Mom is no longer safe at home alone.
Mom is freezing cold in her 85-degree home. “Warm up my beanbags and set the microwave to two minutes,” she tells me for the hundredth time. I am soaking wet with sweat, which brings out my lovely disposition.
I help her to the bathroom, keep track of her appointments, gather information about her bills, get her meals, and on and on…
“Drink your water and Boost,” I remind her for the hundredth time.
“Don’t tell me what to do,” she shoots back. I can’t help but laugh out loud at that one.
A good friend suggested I call hospice to evaluate her. Jim, a hospice RN in his 70s, arrived and instantly assessed the situation with laser-like precision. He told my mom that too much anesthesia from repeated surgeries in the last two years has caused mental confusion. He diagnosed her with extreme protein deficiency and malnutrition and said that if she does not move into her independent living apartment immediately, she will be dead in three weeks. His directness, combined with kindness, resonated with Mom, and she finally agreed to move.
Mom has four banks because nothing with Mom is easy. I take her to the banks to add my name to all the accounts so I can sort out her finances and pay her bills. My niece helped me take her to buy furniture, and we moved her into her new independent living apartment. Hospice came five times a week, but I felt that she was going to need more care.
The first night, she wheeled the commode hospice provided into the middle of the hall outside her apartment door, insulted. Mom was demanding more furniture and wanted to rent additional storage space for her belongings. Hospice suggested putting a RING camera in her new apartment. After four days of independent living, she fell three times. She denied falling and refused to discuss moving into assisted living.
Though my husband, daughter, and son-in-law came to help, I was overwhelmed. In addition to providing direct care for my mom, I was searching for an appropriate assisted living place to be her forever home. We are also sorting through endless boxes of paperwork to determine what is essential and cleaning the house to prepare it for sale. And we needed to convince my mom to move….again.
A family friend helped us find the perfect assisted living home. It is a large, beautiful home with fewer than ten residents and round-the-clock care. Shockingly, Mom says she loves it. We empty her apartment and help Mom settle into her new home. I can breathe easier knowing she will be provided with the level of care she needs to remain safe.
Meanwhile, Mom continues to decline cognitively, and her personality temporarily shifts into that of a lovely little girl with trouble remembering things. She is kind and appreciative when I expect her to be demanding or angry. For instance, in the past, regardless of the gift I bought, she never liked it and would tell me to return it. Consequently, I gave her gift cards.
Recently, she wanted a little wall hanging for her new room. I picked out something from Amazon and sent it to her after I returned home. “I love it, Francine. It goes perfectly in that spot,” she tells me repeatedly.
This quickly changes into her insistence that she goes home. Her brain becomes laser-focused on one obsession after another, such as the precise placement of her garbage can in her room. Once this issue is resolved, she becomes fixated on ensuring the shutters in her room are evenly lined up and so on. Hospice adjusts her medication, and her care providers empathetically try to please her as best they can.
I spend many months going back and forth between South Dakota and Arizona to see my mom. Hospice continues to visit her three to four times a week at the assisted living facility, and a dear family friend also visits her several times a week. I call her daily, although it’s difficult for her to hear me. I am so grateful that the best care surrounds her. But it is very sad to see such a strong, independent, controlling woman reduced by mental and physical decline to having no control at all. The irony is poignant.
I recognize that my mom’s childhood shaped her personality, and her genetics predisposed her to develop OCD. She grew up during a time when therapy was not an option, the internet and Oprah were not available, and self-reflection was not a thing. I’m at a place where I can accept that the relationship with my mom is not what I wanted, and I was unable to bond with her emotionally. I also acknowledge that my relationship with my mom has shaped me into the person I am today.
I can feel compassion for a woman who endured a lifetime of an all-consuming mental illness, which impacted every aspect of her life, especially her relationships with her family. This fragile, vulnerable mom does not deserve years of anger and resentment leveled at her. I begin to feel a sense of relief and lightness, and feel myself letting go of long-held negative feelings. I didn’t realize the heaviness of what I was carrying until I was able to set it down.
