My Grandparent with Dementia

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My grandmother was a young fifty-five the first time I witnessed the first symptoms of dementia. Her eyes grew still and glazed over. It looked as if she were in a trance, but she “came back” very quickly. I had a feeling something might be wrong, and if I were old enough, I’d have wanted to take her to the doctor. I made her some hot, strong coffee and poured it into one of the mismatched cups from her kitchen. We sat on the couch, and I held her hand. “I saw Mary,” she told me. I stared into her sky-blue eyes, looking for that sharpness and diamond glint I knew well.

Bretta’s love for Mary was evident.  From the cheap miniature statues everywhere, rosary beads galore, and predictable words of advice she served up whenever I told her about a problem I was having. “Just give it up to Mary,” she’d say. As a snarky teenager, I doubted that “Mary” had the time to focus on my grandmother… I mean, wasn’t Mary busy? But Bretta’s unwavering consistency made me wonder whether the divine might actually inspire these “trances.” She asked me not to discuss them with “the others,” and naturally, I obeyed.  At an early age, I learned that in our family, “loyalty” meant never discussing most things – like my grandmother’s dementia symptoms – not just between ourselves but also outside the home. So, when Bretta’s visits from Mary started happening more often, my lips were sealed.

I could tell very early on, by her smile and the way her eyes lit up when she looked at me, that I was a favorite. While I relished this status, I had a hard time reconciling my love for her with my hatred of her meanness towards my mother and uncles. She picked on them all the time, and being a tough lady, never bothered to explain her ways.

Early connection

Bretta was the sharpest and strongest woman I had ever known. She always dressed in suits and snappy dress shoes, with her hair perfectly up-styled. When life for my parents got busier, she did the cooking for the family. I shared her defiant, wild streak, which is probably why she caught me every time I did something wrong. If I broke a rule, it was not long before I’d hear from Bretta. The conversation that followed was no joke and could be quite intimidating as she set me straight about, “the ways a lady should conduct herself.”

Once my parents grounded me for a week because of some foolish infraction.  I was trying to climb out a window and felt a tug on my ankle.  Bretta strikes again!  She had a softer side, too, and was very artistic.  Of course, I could always count on her to keep my secrets too.  She taught me to draw and knit while calmly listening to long recaps of whatever book I read that day.

I could tell very early on, by her smile and the way her eyes lit up when she looked at me, that I was a favorite. While I relished this status, I had a hard time reconciling my love for her with my hatred of her  meanness towards my mother and uncles. She picked on them all the time, and being a tough lady, never bothered to explain her ways.

Frequent mini-strokes

As a few years passed, Bretta started to develop vascular disease. Her circulation was so weak that she had to go to the hospital. By that time, I was old enough to be her “interpreter” (of medical speak) at doctor visits, a role I served in dutifully for the next twenty years. I accompanied her at every visit, explaining, among other things, the strange trances, and she’d deny them every time. The doctors all said the same thing: they were TIAs (transient ischemic attacks, or what are often called mini-strokes). They reassured me not to worry. At some point, instead of visits from Mary, Bretta started saying they were “special moments” with her mother, who had died nine years earlier.

The doctors adored Bretta, held her hand, spoke of her beautiful, shining blue eyes, and cream-like skin. She regularly lied to them about her coffee consumption, cigarettes, and food choices.  Feeling guilty for betraying her but at the same time righteous for caring, I’d double back to have more truthful conversations with the doctors.  At the time, doctors did not think TIAs were of much concern. Today they are taken very seriously as harbingers of a stroke, and the repeated loss of oxygen to the brain can cause damage.

Worse with age

By the time Bretta was nearing seventy, her trances, fears, and confusion were steadily worsening. She could still immediately recognize me and hold my hand, those sharp eyes still catching my every error. An imposing and bold woman, she once called my boss because two days had gone by since she’d heard from me. I was mortified when my boss yelled out that I had better take a break and call my grandmother. I remember being angry at first and then melting when I heard her voice (which, by this time, was starting to sound a bit shaky).

The doctors adored Bretta, held her hand, spoke of her beautiful, shining blue eyes, and cream-like skin. She regularly lied to them about her coffee consumption, cigarettes, and food choices.

Along with her shaky voice, Bretta started showing signs of losing some cognitive abilities.  She began to lose the ability to recognize some people. One day, she tried to light a cigarette (you know, one of the ones that she, “didn’t smoke”) by leaning over the stove and, instead, lit her hair on fire. Another time she left the oven on all night. She started to forget where things were in her home, except for the all-important coffee maker. I had to set it up for her, but she always remembered where to find it and turn it on.

Slow decline

As her cognitive abilities continued to slowly decline, Bretta became depressed, so much that she often refused to get up at all. But every time I walked in the door, she knew me, and started firing orders at me. “Go to the store and get me cigarettes,” among them. The increasingly discolored wall behind her belied her refusal to admit she was still smoking. “Go to the deli and get donuts – make sure they’re the crumbly kind; liverwurst for lunch – only a quarter-pound.” These choices, of course, were in direct defiance of the diet prescribed by her nutritionist, (whom she also regularly lied to). I was only allowed to buy tiny amounts, and I knew this was because she needed to see me every day. We would watch Elvis specials together while I did some cleaning and straightening up around the place.

Bretta started having some balance problems and falling down. The doctors grew more concerned because she also started talking to people who weren’t there. There were some horrifying moments, sad moments, and there were funny moments. I rushed her to the hospital after one of the more severe falls.  I will forever remember how she bounced upright and yelled to the woman across the hall, “Whore!” It turned out this sweet, elderly lady resembled some past enemy from circa 1945.

In these later years, I was taking care of my children, taking Bretta to her doctor’s appointments and, too often, the hospital.  I was always translating and negotiating her spot in a real world with which she was less and less connected.

Trying outside help

We hired a home health aide; Bretta made her rest and made her sandwiches. We got another, Bretta told her stories, fed her, gave her cab fare, and asked her to leave. I had to babysit the caregivers, or she would not allow them to do their jobs. Sometimes I got so angry I thought my head would explode. It took a long time to learn to work with this illness, to coax her into the simplest of tasks. I convinced her that a well-known canned dietary supplement was a “special drink for truly creative people,” after which she gladly chugged it down.

Her apartment was in shambles, and she could no longer manage her bills. I happily handled this for her while being entertained by her wildly funny stories. She often forgot the day and date, and she just knew to call for me to orient her. She put bills in her pajama drawer and other paperwork in the refrigerator. She’d refuse to walk for days at a time. She soon refused to clean herself at all, perhaps the thing that surprised me the most as I remembered my meticulously-groomed, well-dressed grandmother. Her hands were often filthy – how had she forgotten how well-manicured they once were? She kept insisting people were stealing her money. She had become very fearful of the outside world, but would still smile, her eyes light, when talking to me about my childhood.

A visit to physical rehabilitation

Arthritis had set in. As it worsened, Bretta was increasingly in pain, and her doctor prescribed antidepressants, pain killers, and anti-anxiety pills. She threw the antidepressants out and took too many of the others. Each visit brought an increased dosage, and her confusion worsened. After a severe fall, Bretta had to go to a rehabilitation center. I spent untold hours talking with neurologists, psychiatrists, and social workers, and filling out paperwork. Bretta tore the papers up and threw them at me. She took a cab home and got there faster than I did.

When I got her into a new rehab facility, once again she took a taxi home. The fierce independence that had served her well all her life was now a set up for danger. Finally, my physician, an old-school Italian man, convinced her that physical therapy with his staff would help keep around to see her great-grandchildren. “Consider it an extended hotel stay,” he told her. Somehow, she agreed.

This time, Bretta took to the place quickly. So many people to befriend! So much exercise! And so much fun in the crowded dining room! She started to draw again. I wondered if she believed she was in a hotel.

Bretta’s rebellion

Then I  got a phone call from a very nervous administrator; it appeared Bretta started a little “gang.”  With her leading the pack, they snuck out to the garden and smoked cigarettes smuggled in by someone’s family member.  Somehow Bretta had found out the code for the elevator. Keeping Bretta in check was like herding cats, and as sad as it was to see her declining, sometimes I just had to laugh at some of her antics.

To care so genuinely for someone in a spiraling world of dementia is to balance routine and horror, to serve endlessly, handle another adult’s hygiene for them, and constantly try to negotiate the best professional care for them, all while trying to maintain your own sanity. It is sometimes funny but mostly awful. It is sometimes embarrassing, often aggravating, always exhausting, and finally devastating when all the love in the world cannot save them.

After a couple of years in a wheelchair, she started to insist on walking.  Unfortunately, it was often when no one was around. When the administrator called to tell me, I didn’t believe it because Bretta had not walked more than a few steps during physical therapy. The nightly escapes and walking continued. One day she fell again and was rushed to the hospital.  A bone was sticking out of her leg!  A dreadful infection, MRSA (methicillin-resistant Staph. aureus), set in and quickly spread through her body. My cousin heroically came and held our hands as the doctors made an incision and placed a tube in Bretta’s windpipe so she could breathe. I begged her to cooperate, but I wasn’t getting through. They had to tie her to the bed in restraints. That night I cried nonstop.

Accepting the end

Surprisingly, she seemed to get a bit better, and they were eventually able to remove all the tubes and devices. With her eyes and flailing hands, she appeared to beg me to untie her and give her a drink of water, instead of the strange sponge sticks they gave us to moisten her mouth. As soon as she got her voice back, she started to beg, “get me out of here!” She did not understand how sick she was. A day later she died, parched as the desert.

To care so genuinely for a grandparent in a spiraling world of dementia is to balance routine and horror, to serve endlessly, handle another adult’s hygiene for them, and constantly try to negotiate the best professional care for them, all while trying to maintain your own sanity. It is sometimes funny but mostly awful. It is sometimes embarrassing, often aggravating, always exhausting, and finally devastating when all the love in the world cannot save them.

I still start every new day by taking time in the morning to sip some strong hot coffee from one of her mismatched cups. I laugh when I think of her prim suits and her not-so-secret smoking and escape adventures. Now I understand that her “visits” were mini-strokes, but I still keep two of her Mary statues on display. I protect all of our knitting projects: multi-colored afghans. Maybe it is foolish, but when I think back on that last day, I regret following the doctors’ orders.  I regret not picking her up, giving her a big glass of water, and helping her escape one last time.