Lately I've been thinking about my Mom, her condition, and how an absolute perfect shit-storm created the mess of a situation she'll likely spend the rest of her life in.

My Mom was a life-long functional alcoholic with brief periods of recovery quickly followed by relapse. Very few people were ever aware of this as she hid her drinking incredibly well. Her own best friend, her brothers, and parents were completely oblivious to any problem and simply assumed she liked to have a few drinks from time to time.

During my childhood my Mom often worked several part-time jobs, in addition to a full-time job, while taking classes to obtain her teaching degree. Upon graduation she continued working full-time as a teacher, part-time as a tutor, and continued classes for her master's degree. As a child I would find pint sized vodka bottles stashed under cushions, in the back of closets, and under the seat of her car. She was never late to work, she rarely missed any days even if she was sick. When my Dad fell critically ill in 1997 she did absolutely everything it took to care for him. Upon my Dad's recovery they soon divorced, much of it (though not all) attributed to her alcoholism.

Several years later she remarried my step-father. A wonderful, hard-working Polish man with a hair-trigger temper, who'd give you the shirt off his own back if he so much as sensed you needed it. He kept a well manicured lawn and impeccable home. On Sundays he'd drink a beer or two and watch Notre Dame football. He rarely ever drank more in volume or in frequency.

In September of 2019 my Mom, my grandmother (her mother), and I stood at the bedside holding the hands of her father, my grandfather, as he passed away from old age. While it was difficult, my Mom handled it much better than I had anticipated as she was always quite led by her emotions.

Just over six months later it was April of 2020 when my Mom's husband first fell ill. He was whisked away by EMS and due to the beginning of COVID. She was unable to see him for almost a month as there were so many unknowns about the pandemic and what it meant for the world. He spent almost this entire time in the ICU, facing several major surgeries. Their only contact happened when an occasional nurse or social worker took pity and allowed them to FaceTime. She would cry and talk to him while he lay there in a coma. He was finally moved to a rehab center 90 minutes south of their home where my Mom would finally be allowed to reunite with him.

While he was there the facility allowed one visitor per day, for one hour only. She shared these visitations with his daughters.

During all of this time my Mom ate very little, but continued drinking. I suspect her alcohol intake increased substantially. I was reaching the end of my pregnancy with my third child, and due to COVID hadn't traveled or been able to visit. I spoke to her on the phone often and could tell something was off with her, but I brushed it off due to the stress she was under. I suspected she was drinking heavily, as was her pattern during stressful periods.

I began to notice that my Mom would say the same things every day. She would ask me the same questions every day about his medical care. “She's super stressed,” I told myself.

Things with her husband began to improve and she started making preparations for him to come home and finish rehab there. For a short time her demeanor improved and a bit of light came back to her voice. Just two days before he was to come home, he had a sudden and unexpected decline. He would have to stay longer. And eventually he did come home, but on hospice and he soon passed away. She had suffered two major losses of people she loved deeply in such a short amount of time.

When my step-father died in July of 2020, my third child was six weeks old and we were finally able to travel 500 miles by car for his funeral. Upon seeing my Mom I was completely taken aback. She was incredibly gaunt, with thin, slightly yellow, loose-skin hanging off her skeletal frame. Again, I attributed her condition to the tribulations she'd endured over the previous few months. Prior my Mom had always been heavy set, to borderline obese.

We had planned to stay with her for the week, but my husband and I could tell something just wasn't right, so we extended our trip for another week.

Staying with my Mom was like watching that movie “Groundhog's Day.” She'd go to bed at night saying “I'll be going to work tomorrow.” She would set her alarm and go to bed. In the morning we'd awaken to her clock radio beeping in her room, and it would continue indefinitely until I would get up and go in to shut it off. I'd wake her and she'd seem annoyed. Eventually she'd get up and saunter slowly into the living room, taking tiny, unsteady, shuffling steps.

I'd then hear her make a phone call. She was calling off from work. At the time the entire school system was on distance learning classes due to the pandemic, but she said she simply couldn't focus and needed just one more day. Who could blame her? She had just lost her husband not long after losing her father. Her friends, coworkers, and senior staff encouraged her to apply for FLMA but she refused, saying she needed to work.

At first this appeared normal, but it continued the same pattern, day after day. In the early morning she'd watch Andy Griffith and I Love Lucy. In the afternoon she'd switch over to HGTV, then the evening news, and then CNN for the remainder of the evening.

She rarely ate, save for an occasional bite of food. She would request, to the point of obsession, her favorite foods. She wanted fudge, spaghetti, and Fazoli's. I zipped all over my hometown constantly with a 6 year old and an infant in tow, bowing to her every whim, praying that finally something would help her feel better. When I would finally return with whatever food she'd requested she'd take a bite, and then put the rest in the refrigerator. She never was one to eat leftovers.

She would occasionally grab a bottle of water, open it, and set it down without taking a sip. The only thing she ingested, and in copious amounts, was chardonnay. The cheap, boxed stuff that you could purchase two liters at a time. I really initially believed this heavy drinking was due to her grief, and the stress, and all of the burdens she imagined she would soon face.

She began telling me she was worried about her late husband's daughters coming to kick her out of the house they paid off together. We went through his will that left everything he'd owned except for his beloved Corvette, to my Mom. Whew, no worries. “Problem solved” I thought. But she'd repeat this concern daily, often many times a day. Every time I'd reassure her that it was already taken care of. She became increasingly paranoid that people were trying to break into her home. She started saying things that didn't make sense, recounting events and conversations I knew did not take place.

I began to grow suspicious that something more dubious was going on. I consulted some of her closer colleagues from work, all who'd told me their own wild accounts about her recent behavior. I started to do some research and happened upon something called “Wernicke-Korsakoff Syndrome”. I reached out to her doctor, who, of course, wouldn't speak to me due to HIPAA, but did agree to coax her to come in for a check up, even going so far as to call her an hour prior to remind her to come in.

She went to her check up, but, in their short visit, appeared simply grief stricken but otherwise normal. Due to COVID I was not allowed to go with her. She wouldn't have let me anyway, she was always secretive about her doctor's visits due to her alcoholism. They drew simple labs, none I had requested such as her thiamine. Her liver enzymes were elevated but not to the point requiring intervention.

My Mom would soon have an appointment with a grief counselor. I thought maybe we'd finally have a breakthrough and she'd get the medical care she needed. This appointment, too, left me with disappointment. The counselor wasn't allowed to share anything with me, and didn't seem concerned.

Soon my family and I would have to return to Tennessee. I stocked my Mom's freezer with easy to heat frozen dinners, made her a GIANT container of her favorite food, spaghetti with extra sauce, loaded her fridge full of bottled water and hoped for the best. Apprehensively we returned to Tennessee.

My Mom would call several times a day, confused, crying. She would beg me to come back. We had other things to attend to and I simply couldn't for a few more weeks. Sometimes she sounded frantic. Other times she sounded flat. One day she quit calling, and I couldn't reach her for three days. I wasn't able to get a hold of anyone to check on her and assumed she just needed time to be alone with herself.

When I finally got through to her on the third day something major had changed. My Mom no longer had any tone to her voice. It was very cold and robotic. I would hang up and call an hour later and she'd have no recollection of our previous conversation.

I colluded with her coworkers at the school she worked for, hoping to get HR to force her to take a leave of absence requiring a doctor's evaluation to return. I started researching how to obtain conservatorship. I needed to have three people write letters to a judge with their testimony about her behavior. I asked two of her fellow teachers, her para, and her principal and they agreed! I firmly believed this would resolve things and we'd finally be able to get her the help she desperately needed.

Suddenly, one of the teachers reached out to me and said she was told by their principal not to cooperate or talk to me. The other disappeared. The principal went off the map as well. I can only assume they were under orders from human resources to cease contact with me as they built a case against her. The only person who remained in contact with me was her friend, a dedicated paraprofessional. She would go out to my Mom's house several times a week to check on her. She'd bring her food, do her laundry, and keep her company. She'd called and give me updates.

The updates became increasingly obscure. “I came and your Mom was laying on the floor, topless,” “We had to call the fire department, she turned on the fireplace and stuck her hand in it. She couldn't figure out how to turn it off.”

I kept my Mom's best friend, who lived in Florida, apprised of the situation. We were both grasping at straws, trying desperately to figure out how to find help for her. Her best friend sent her own friend to check on my Mom several times, and she'd often come back with stories similar in craziness to the paraprofessional's stories.

Finally, someone was sent to check on things and found my Mom unresponsive on the floor. She was still alive, but barely. She was cold, and completely disoriented. She was transferred by EMS to the emergency room. FINALLY!

I spoke with the ER attending and told her about my Mom's long term history, the weight loss, the drinking, and the recent chain of events leading to her emaciation and current alcohol binge. She agreed that it did sound much like it could be related to Korsakoff's psychosis. She did the labs I requested and her thiamine and calcium were critically low and agreed that this did fit Korsakoff to a T. My Mom was quickly admitted and started on high dose IV thiamine.

While in the hospital she had a battery of tests: EKG's, an MRI, numerous labs, many neuro psych interviews. The neurologist said her nerves showed significant demyelination, meaning many of her nerves were very damaged. He also noticed substantial encephalopathy and shrinkage in the frontotemporal regions. He said that he doubted she would ever be “skillable” which meant he didn't think she would be able to take care of herself independently and make her own decisions ever again.

In my Mom's living will she had named her husband as primary Power of Attorney if ever she was found to be unable to make her own medical decisions. Thankfully, she had also had the foresight to name me as POA if ever anything happened to him. The hospital's social worker sent a letter with the hospital letterhead to me, which I then was able to take to her attorney's office to enact the POA.

Finally, I was able to get all of her affairs in order. I closed and consolidated her bank accounts, paid some important bills, sold many of her belongings, stored away anything sentimental, and completely cleaned out and sold her house to pay for her long term care.

While she was in the hospital she was not oriented to time, date, or place. She believed she was in her teenage years, living in her teenage home, catacorner a funeral parlor in which she used to play in with the children of the family who ran it. Sometimes she said she was in the basement surrounded by dead bodies.

After her time in the hospital she was sent to rehab as she could not walk without assistance. Quickly she regained her ability to walk but then plateaued and was kicked out since they could no longer help her. I had to find her a place to live. Finally, I found an assisted living home 45 minutes from where I live, 500 miles or some from the home she'd spent most of her life in. I moved her as soon as we were all able and she has been there since December of 2020.

She will not be able to stay in assisted living forever. It is quite expensive month to month, and we are paying for his medical care and medicine out of pocket. She is very likely to outlive what meager funds we received from the sale of her home. Her short term memory partially recovered. Often she can remember events and conversations from a few days prior. She will remember larger scale events like birthday parties for a week or more, though not in detail. She never regained the ability to understand the concept of time or distance, and doesn't often remember that she is no longer in her home state.

My house is quite small, and my Mom is often quite cross and unreasonable with my children, so living with me is not an option. She doesn't yet qualify for disability (it's been an extensive process) and Medicare has already denied her. I'm hoping that at some point a good idea will come to me and I will be able to solve her placement problem permanently. Until then I have been doing the bare minimum to see that her every need is met. I send her denture paste, hygiene supplies, clothing, and snacks to her facility via Amazon. I do see her and spend time with her every few weeks, but it is so draining and painful.

I am left with only a shell of my Mom. She will never have a close relationship with her newest grandchild or any subsequent child I may have. We will never have another meaningful conversation. She will never again step foot into a classroom as a teacher. We've never had a very good relationship and now it's likely that we never will.

I am her only child. I feel drained and resentful for having all of this put on me and am considering going to therapy to help reconcile my feelings. We do not have any extended family left who can help, the few who can will not.

She has no executive function. She can think or she can say “I am hungry” but nothing will compel her to grab a snack or prepare a meal. She can think or say “I am cold” but it won't occur to her to grab a blanket, to put on a sweater, or to change the thermostat. She can miss her Mom, but she won't think to pick up the phone and call her.

I pray that by sharing our story I can help someone else to see the warning signs of this awful affliction before it is too late. I know that in some ways my Mom is one of the “lucky” ones who was found and diagnosed before it killed her. I've read the stories of many people, despite the desperation and best efforts of their caretakers, who've died due to this illness before proper intervention. Sometimes I feel guilty to think that she would be better off having died instead. I know she would have preferred it.

It is difficult to diagnose, especially in the midst of an already taxed medical system where doctors have forgotten how to listen to patients, and where patients have learned to blindly trust doctors and our medical system. I urge anyone who reads this to keep pushing for answers, for treatment, and for definitive diagnosis. No one else will advocate for you or your loved one.