Documentary - Still the Queen: Three Years with Dementia

Some people are relieved to enter a nursing home, but my mom arrived kicking and screaming. She was a fiercely independent woman and it didn’t help that she had no insight into her significant illness. She was considered a flight risk for several months. The early days at the Memory Care Unit were difficult, and on this day, she is lying on her bed, pouting, but fully dressed in case this would be the day she would be allowed to go home. She was the embodiment of a saying she used over the years, “I’m all dressed up with no place to go!” Feeling resigned, she went to bed fully clothed, with makeup and jewelry, in the middle of the day. Before dementia, nothing would have upset her more than wrinkled clothing but on this day, by this point of his disease, she simply didn’t care.

On some days, mom was quiet and depressed. Her demeanor regressed from that of a confident independent woman into one more like a child over the course of her disease. Once she was mid-stage, she even began enjoying dolls and stuffed animals once again. Here, she has just moved from Assisted Living with enhanced memory features to an actual Memory Care unit. She is disoriented by the new room, new environment, and new caregivers. To add to the confusion, it began snowing heavily just outside her large window, which made the environment outside her new window look 'different.' She clings to her teddy bear, bewildered by the winter wonderland outside her room.

Nothing made my mom happier than 1) mail and 2) unexpected visitors. This was a double-packed day as her niece from out-of-town surprised her with a visit on Mother's Day and delivered her mail! My mother relished the attention and was always glad to talk to anyone. Although her niece read the mail to her, she wouldn't remember it a minute later. However, it made her happy in the moment and she would remember it again when she saw the letters.

Dementia isn't linear. Just as I became concerned that she was getting worse, she would have a good day. She most looked forward to Fridays, which had always been—and continued to be—beauty shop day. My mother faithfully visited a beauty shop each week of her life, and being in a Memory Care unit didn't change that tradition. The facility had its own salon, which helped my mother grow to like this home in the long run. On this day, I forgot that she was at the beauty shop when I stopped by to visit her...and this is the look of joy that overcame her when she recognized me. This was indeed a good day!

After growing up on a farm, mom had always been a lover of all creatures great and small. Her earliest photos show her with pet dogs and cats, and we always kept animals from Persian cats and Shetland Sheepdogs to Arabian horses throughout my childhood. It didn’t surprise me, then, that despite her memory decline she always maintained her love for animals. She couldn’t remember their names, their breed, or sometimes even their general type, but she always remembered that she loved them. Pet therapy animals were brought in weekly to visit residents, but this robust puppy happens to be my dog, Chief. He was strong but she wasn’t afraid and she wouldn’t let him go. She hung on for dear life as he hopped around the day room while she talked and sang to him for nearly an hour. It was everything to me that this part of her personality never eroded away.

Because of her numerous health conditions, including brittle diabetes, mom had numerous medications and medical visits for checkups and blood work. These visits were, to her, chronic, painful, and a constant reminder that “something was wrong” with her body. It infuriated her when people told her she had multiple serious illnesses. She would insist that she had “never been sick in my life” and because of her lack of insight would often refuse care. At some point, with ongoing education from the caregivers she grew to respect and love, she accepted it to a degree while maintaining “there’s nothing wrong with me.”

As her disease progressed, mom’s mood became more erratic, particularly at night. She also began obsessively picking at things, as she is doing here with her scalp. I knew this behavior was beyond her control as, in the past, she never would have touched her perfectly coiffured hair, but now she played with it nearly all the time. Repetitive motions were common and she would get 'stuck in a loop' while performing tasks such as combing her hair or smoothing out her bedspread. At times, she would spend 30 minutes trying to get her bedspread 'just right' and would ask me to join her in straightening it out; however, it was never done to her liking. The only way to get this behavior to stop was to distract her with another activity.

About a year into her stay, set-backs became more common and more serious. This one resulted in an emergency room visit to a major health facility two hours away. This image haunts me because of her vacant expression; it is almost as if she was looking through me rather than at me, and that is what I remember of that day. She was bizarrely calm and oblivious that she was in an emergency room, which I suppose is a blessing at one level, but was certainly a bad sign of her disease progression on another.

As my mother's memory faded, the nurses suggested we surround her with some of her favorite things for comfort and in hopes of jogging her memory. We loaded her bureau with photos of her children and grandchildren, her prized bowling trophy, stuffed animals, and art which helped for a short time; however, on this day she vacantly stared ahead, as seen in this reflection, showing little recognition. It ultimately just wasn't enough to sustain her.

Days with dementia are like roller coasters. Just as she had a great day, something bad would happen. Here, she has fallen again and broken her wrist. Her anger and tearfulness are palpable -- she is infuriated this happened and that she has to stay in bed. She would occasionally rise and try to jump out of her hospital bed, so it took a great deal of redirection to keep her settled and occupied. This wrist turned out to be more problematic that we realized at first. Mom had finally been talked into using a walker. She was previously too vain to try one – “I don’t want people to think I’m old!” – but after falling several times she realized that the walker would help her maintain her independence for a while longer. But now, even the walker wasn’t an option for weeks until her wrist healed. I think this was the start of her rapid decline.

Mom loved visits and had many visitors including her grandson, depicted here photobombing this shot. This was a wonderful day because she could somehow pull herself together a bit and try to converse when the grandchildren visited. Her conversations were repetitive and didn't always make sense, and she would typically call the children by random names, but she expressed her love for them as best as she could, and they understood. Mom also loved talking on the phone, an ability she lost soon after this photograph was taken. Even here, someone had to find the number, dial it for her, put the phone in the proper position, and tell her when to talk. She had to be prompted to speak loudly into the receiver and sometimes had to be prompted to say 'hello.' Nevertheless, she enjoyed this even though she didn’t know who she was talking to, nor did she know what they talked about almost immediately afterwards. She literally lived 'in the moment' and grandsons and telephone calls made her happy--at least for a while.

Once a social butterfly, and the talk of the town, my mom now sat with other residents but rarely interacted with them. When she first arrived, she was different and engaged with others, especially favorite staff. By the time she moved into the Memory Care Unit, she would sit silently and it wouldn’t occur to her to talk. It was such a shocking juxtaposition of her present/former life, that the dark sunset happening in the scene is a tragic and perfect analogy for her transition during this difficult period.

My mother became well known for stealing sharps and scissors. No one realized she was hoarding these items for quite some time, as she carefully hid them around her room. Her goal wasn't to harm herself, but rather to use them to cut off the expensive prescription compression hose that she was required to wear due to edema. These hose cost $50 each and she cut up every pair she owned because she hated the 'feel' of them. The staff wondered how she was cutting them off, since residents didn’t have access to any sharps, but she successfully removed them every single day. The matter was solved once they did an intensive room search and uncovered a huge stash of sharps hidden in her room. They learned that she had been stealing scissors off carts and knives from the dinner table to hoard in her room for such occasions. It's just one of the mysteries of dementia that mom couldn't remember basic information yet somehow knew how to palm contraband, successfully hide it, and then cut off tight hosiery with such surgical precision that she never hurt herself in the process. After the nursing staff reclaimed all the sharps, mom refused to give in. She was adamantly NOT going

My mom usually wore long sleeves, but on this day I caught her without her jacket on. This was the first time I had seen her in short sleeves in ages; she would formerly cover her arms to improve her appearance but now she didn’t have the memory to care. I remember sitting across from her and being shocked and saddened by the view. Her once dark tanned beautiful skin was now white, spotted, sagging, bruised, and paper thin. And yet, she sat as majestic as ever, wearing some of her faux jewelry that she could keep on the unit. Unlike the past, she was oblivious, but I was not. And it worried me. Why this? I don’t know. I then recalled a physician who once told me, “Growing old is not for sissies!” and suddenly I knew what he meant. It is a tough, tough road…and definitely not for sissies.

Part of mom’s nightly Memory Care routine was receiving insulin before getting ready for bed. She was a night owl in earlier days and would often stay up talking to friends until one in the morning, but times were very different at this point and she went to bed quite early. If the phone rang at night, she wouldn't remember how to answer it if no one was there to help her. Old friends would attempt to call but they typically couldn't reach her even though she was often sitting right by the phone. People naturally gave up calling over time, even the closest of her friends and family, but she didn’t seem to notice or mind. Another aspect of this disease is that mom quickly lost her sense of time and season, which made for some interesting decorating choices. At one point she had items from Valentine's Day, Easter, July 4th, Halloween, Thanksgiving, and Christmas on simultaneous display. As a result, the Halloween doll seen on her bed is simply a decoration and does not necessarily suggest that this photo was taken around Halloween. She was also often seen wearing her favorite Christmas sweatshirt on random occasions.

As noted earlier, one of the hallmarks of dementia is that the patient progressively becomes more childlike in many ways. Mom sometimes talked in a childish fashion and she regressed in many other ways, such as her new affinity for dolls and toys. The role reversals occurred with her caregivers as well as myself. Here, the parent-child dynamic is illustrated quite well as mom is seen looking up at her caregiver with an innocent look of glee, just as a toddler might gaze at a beloved parent.

This was another important day of transition. It was on this occasion that I realized my mother no longer had any insight or concern for her appearance remaining at all. Since she was so preoccupied with her looks throughout her life, this was one of the changes I noticed most intensely and that affected me the most. Here, she has come from her private bedroom after spending a long time “getting ready” with this result: a complete bedhead as her hair was sideways, flattened, and disheveled. She was proud of herself for being the first at the dining hall for dinner on this winter night.

As her disease progressed, mom became more internally-focused and spent days in this chair – 'her chair' — watching TV in the Day Room. She didn't actually “watch’ TV, as she never knew what was on or what was happening, but rather she gazed at the television; it is an important distinction. There are usually residents in the other chairs but this was a rare day when she was alone in the activity room. I began finding her asleep in this chair more frequently in the last few months of her life. And by the way, if you look closely, as discussed earlier in #14 Scissors, you will see that her compression hose are rolled down around her ankles...What a woman.

My mother always had a strong faith. She read the Bible each night and attended church 'every time the doors opened' as they say in the Bible Belt. In her illness, she maintained the habit of picking up her Bible in an almost rote fashion. She had good vision and could see the tiny letters, and she could usually read the words; however, she had no comprehension or retention of the passages that she had just read. Instead, she seemed to pick up the Bible merely out of habit.

This scene was another pivotal moment for her decline, as compared to my earlier visit to the Beauty Shop in #4. On this day, her favorite day of the week, Beauty Shop Day, she is fast asleep under the warm dryer, unengaged with others surrounding her or the beautician she used to converse with just a few months earlier.

This haunting image was the last picture ever taken of mom sitting in “her chair” in the day room of the Memory Care Unit. On this day, she wasn’t sleepy, she was upset. She wouldn’t eat or drink and no one could cajole her to try. This look isn't the typical vacant one that I typically saw when her dementia was flaring at night, but it was instead a look of desperation and a plea to help her. But we couldn’t because no one knew what was wrong. She perked up a bit in the afternoon so I left and told her I would see her there again the next day. I did see her the next day, but it wasn’t to be at that Memory Unit, in the day room, by her favorite chair…ever again.

This was the next time I saw my mom: early the next morning at the local emergency room. She had woken up in the middle of the night. The night nurse found an explosion of blood all over her bed and had her rushed to the hospital. The CT scan revealed the worst possible news: her colon had ruptured and with a DNR in place I realized which way this journey was about to go. Everything was surreal, but for another blessed window of time, after the pain of the colon rupture but before it intensely sickened her, my mom was surprisingly chatty as we waited for a hospital room. And then I had the shock of my life. My mom turned to me in her weakened state and clearly and emphatically asked, “Where is Joe Sutton?” I couldn't believe my ears. My mother hadn't been able to remember my father's name in the past three years, even with rehearsal with her memory therapists, and yet here, during a medical crisis, she blurted it out loudly and as matter-of-factly as if she had known it all along. Immediately after that statement, she returned to her confused, mumbling state. It was so odd I wondered if I dreamed it but on the next day, after her fever set in, it happened a

After death, mom’s body was flown to her former home in Tennessee for burial. The airline required her to make a layover in Atlanta so she took a little trip from North Carolina to Atlanta to the Great Smoky Mountains of Tennessee before heading into the small town where she formerly lived. I think she would have found this humorous. She always loved to travel so she managed to get in one more side trip before her final rest. It is her culture and generation's tradition to have an open casket ceremony. I was not on-board with this and was terrified to see her dead, as were many others, but all of us ended up glad we did. We apparently hired some geniuses of the funeral industry because my mother was magically transformed thanks to the funeral workers’ care. She looked 20 years younger, vibrant, “alive,” and healthy. In fact, it appeared that she was just sleeping and that she might wake up at any moment to yell at me about my hair. I think everyone was glad to have this image as their final memory of her versus the harrowing memories we had of her final months with dementia, during which she was robbed of her looks and her “self,” but as odd as it seems, and