Monday, April 13, 2015

The Sun Goddess Confronts Sundowning

All I needed to do was Google Sundowners in order to find exactly what I was looking for.

Do you find yourself Googling to identify a disease to go along with your symptoms? For example, when you have a fever of 102, chills and no appetite, do you surmise that you're coming down with a bad case of the flu? Do you believe everything you're reading on the internet? If we take a step back and allow ourselves to read a bit further, we may also find that a fever, chills and no appetite might apply to at least 40 or 50 other conditions and diseases! Crazy isn't it that we continue to stick to our own conclusions until a medical professional either validates or blows apart our precious theory?

I reacted the same way when it came to my mom's Alzheimer's diagnosis, until I could no longer fight what the professionals were saying. I was seeing the symptoms, and the changes I saw were much more than a fever and chills. What about Alzheimer's disease? Its symptoms and descriptive behaviors are as numerous as the folks suffering from this awful disease. No wonder we caregivers and advocates live in the land of confusion as we try desperately to pick apart the evidence staring us face on. One moment we hope, and the next moment our hopes are dashed.

Recently, Mother's moods were running from high to low and back again, all in a matter of hours. I wondered what was causing this when a friend shared with me that she might be sun downing. I smiled, thinking, oh, how appropriate for someone who's spent her entire adult life as a sun-worshipper.

I reached into the symptoms of sundowning, also known as Sundowner's Syndrome. It seems to occur in the late afternoon or early evening and, according to the Sundowner's Facts website, and can include increased confusion, disorientation, agitation, anger, depression, restlessness, paranoia and rapid mood changes. Well, I declare! That certainly explained the swing in my mother's recent moods. The symptoms are often more severe and pronounced, and almost always worsen as the sun goes down and natural daylight fades.

People pay big money to have a tan like Joan!
Mother has always hated the winter and usually isn't comfortable when the sun goes down. As the seemingly long winter of 2014/15 drags along, so does Mother's restlessness. New, bad behaviors arise such as temper tantrums, or not using her indoor voice to proclaim, "I want to go home" and at meal times shouting, "I didn't order this food" (when actually the staff brought her exactly what she ordered).
Last summer I received a call from her care center. They were concerned that Mother was spending too much time in the court yard sunning herself. They asked me if they should bring her inside or put some sun-screen on her. I replied that she had spent every waking minute on sunny days for the past 70 years sun tanning and never using sunscreen! No need to change anything now.

Personally, I can't wait until daylight ebbs longer and the sunlight gets warmer. I can't even imagine how much the "sun goddess" inside of Joan longs to thrive again. I'm convinced that spring and summer is exactly what the doctor would order for Sundowning, if only he could write a prescription for it.

Short, but Sweet

My momma always said, "Life was like a box of chocolates. You never know what you're gonna get." ~ Forrest Gump

This morning, I woke up startled from a nightmare/dream that seemed so very real. Mother was standing beside my bed offering me a piece of her favorite chocolate, pecan turtles. She was loving and kind and when I asked her why she wasn’t at her care facility, she sweetly told me that she had just walked out the front door, took a ride with a nice man, stole a box of her favorite chocolates from the local grocery store, and then walked to my house.
As I cleared the cobwebs from my foggy brain, I wasn’t sure whether to be horrified or delighted at what I had just experienced! (or dreamed I'd just experienced!)

Our minds are a funny thing, even for those of us who are not living daily with the confusion of Alzheimer’s. We Advocates and Caregivers never truly rest, our loved ones always on our minds. We toss and turn with the ravages of this disease. We too seek respite from the wake of its devastation.
Maybe it was a dream or some wishful thinking that manifested itself into a dream. But, for now, I can smile, remembering that mother’s favorite chocolates are what she would offer me if she were to walk through my back door, into my bedroom, and reach down lovingly to offer me a piece while I'm sleeping.

Devil or Angel?

I enjoy watching cartoons that portray someone with a devil (equipped with horn and spiked tail) on their one shoulder, and an angel (adorned in white with shiny halo) on their other shoulder. Maybe that's because today I'm identifying with those cartoon characters (more specifically today, the red one.)

I wish life were as simplistic in message as a cartoon, but life is more complex than that. I have days when I don't want to be near my loved one with AD (pitchfork armed and ready to fire) and other days when it's okay no matter how the visit goes (halo shinning and straight). The thing that stinks most about this disease is that one minute you're riding through rainbows, then suddenly your trajectory rides straight into the dark abyss. Never steady, never predictable, always outside of your control.

Right now the devil is whispering more loudly into my ear. Judge me if you must, but until you can relate to me with your empathy gene, you won't really understand my feelings. And, I don't judge you if you're a bit disappointed in me. My prayer is that you'll never need to experience this disease. My prayer is that there will soon be a cure, and none of us need live this disease or watch those we love suffer from this disease.

There's a popular saying, "hate the sin, not the sinner." Today I'm saying, "hate Alzheimer's, not your loved one."

If you have a loved one with Alzheimer's or other forms of dementia, or have ever experienced the devastation of these diseases, you can relate. I'd love to hear your comments, whether you're feeling good or evil today.

Sunday, April 5, 2015

There's No Place Like Home...There's No Place Like Home

The majority of us are familiar with the Wizard of Oz, that 1939 classic movie where Dorothy and Toto meet the Lion, the Tin Man and the Scarecrow shortly after being ejected from their home during a Kansas tornado. On Dorothy's journey she sees things that are interesting, intriguing and beautiful. On the other hand, she's often met with frightening, dark and ugly creatures. Eventually, she and her new-found friends meander their way down the yellow brick road to meet the Wizard who wasn't really cracked up to be what everyone promised! All Dorothy really wanted was to go home. She'd enjoyed her adventure, but could not wait to be back at home again. She was willing to endure fear and sacrifice anything in order to be home again.

For the past eight weeks, that's the way it's been with Mother. "I just want to go home!" she repeats over and over again, while slamming her fists on her chair or nearby table. Every visit, I leave feeling guilty that I cannot bring her home. What she can't seem to grasp is that we simply don't have the stamina or resources to make sure she receives 24/7 safety and care. The facility where she is now takes very good care of her. At least 15-20 professionals oversee Joan's needs every day. After nearly 10 years of caregiving, it's now an impossible task for Larry and me, being only an army of two.

During a visit this week with Joan and me, her granddaughter and her great-grandchildren, she made her request known to them ("I just want to go home!"). I once again told the little white lie that all family members and care partners tell to their loved one with dementia - "I'm sorry, you can't go home until the doctor says so." At that exact moment she got up, said I'm going to find a doctor, and stormed out of her room. What was I to do? Let her go, that's what. My daughter and I smiled at each other knowing she would never find a doctor to tell her what she wanted to hear. Darn it if she didn't come back to the room with a professional wearing a white lab coat! (Who preceded to tell her she cannot go home, and that she was there for safety reasons).

What is that instinct within us that longs for home? I've read that abused children long to return to the parent who's been abusing them rather than to stay in a foster home. I read more recently that even if we were to take our memory-impaired, loved one to the home they lived in before they went to live at the full-time in a care facility, it would not be the home they are envisioning. More often than not, people with dementia and other forms of memory loss are longing to go to their childhood home, a place where they felt safe and loved 60 or 70 years ago.

Joan really loves her place at Darby Glenn often commenting that everyone here knows me, everyone loves my place, I like the meals, and all of the people here are really nice. Then there are other days when she complains about the food, her laundry and clients who bother her (all of us can identify with Joan on some level here, don't you think? We all have bad days).

Toto, I have a feeling mom knows full good and well that she's not in Kansas anymore, but even if I clicked my ruby red shoes together three times, I still can't make the Alzheimer's go away. Most days I need to seek the Lion for added courage, the Tin Man for a brain to process this all, a Scarecrow who teaches me to not lose heart, and most importantly of all, I need to find the Wizard who will soon discover a cure for this tumultuous disease called Alzheimer's!