Dementia and Mercy

Dementia

Dementia is a beast, there is no doubt about it.  It is a thief that comes to steal and destroy.  As I watch (and listen to) my mother’s frantic anxiety as her mind goes away it’s laughable to think that experts say that exercising your brain with hard thinking could keep dementia from finding you.  From my vantage point that’s like saying you can think the dark away if you try hard enough.  There is so much we don’t know, however, people who provide hands-on-care (as well as some experts) do know that well-accomplished highly educated people struggle more, struggle harder with losing their memory, their ability to think and reason clearly, and with losing the ability to maintain a solid sense of self.  An extra crossword-puzzle a day will not fix this problem now, nor would it have kept it from happening.

My responsibility is sad and heavy.  From quite a distance I provide the plan and the direction for my mother’s care.  Care is a loose term as she is completely resistant to help. Her dementia has reduced her cognitive abilities by at least half and she continues to believe that this frustrating and frightening state of affairs is due to something that other people are doing to her. Her raging anger is justified, but clearly misplaced.

The people who provide the little care she will accept are members of her recently deceased husband’s family and a friend or two from their tiny country church.  Of course, she doesn’t recognize it as care, so their ongoing presence in her life is acceptable and for the most part welcomed.  On occasion they invite her over for dinner (but she is becoming disruptive), they spend their days off with her (outside because her house is seriously dirty), they pick her up for church (where her conversation goes around and around in an unhappy loop), they take her to the very small local grocery store (because she becomes grossly overwhelmed in the large supermarket a half-hour away).  They take her to doctor’s appointments and will pick up her prescriptions when I let them know that the pharmacy called.  They are like a silent army around her, trying valiantly to treat her like the person they remember to be. They check in with me by phone, texts, and email.  We work together to do the best we can.  I drive the 6-8 hours once a month and usually stay anywhere from three days to a week.  One time I stayed a whole month.  All of this strain and fear and extra effort of kindness and care have to happen because she refuses to leave her home for a care situation and because she can’t be placed against her will—not yet, and not without some catastrophe.

I do not mean to downgrade the efforts of these beautiful people by referring the “little” care she will accept.  They are giving mightily and would do more if she would let them.  But this means that there are no prompts for hygiene, no housekeeping or laundry being done, no one is allowed to clean the spoiled food out of the refrigerator, and no one is cleaning up after the animals who are not encouraged to use good in-house hygiene habits any more. And no one really knows what she eats or when. There is new danger everywhere when a person can’t remember how to turn things on or off, or how to lock and unlock.  In our last phone call she told me that people have locked her out of everything in her house, that she can stay in only one room during the day, and the only way she can get out is to crawl under the door.  (She speaks this as literal truth, but it takes some  decoding to understand that it’s a description of how she feels.)

Sad. Frustrated. Often overwhelmed.  All of us. Most of the time.

The local authorities say that she seems to be doing okay and that she’s not in clear danger.  They might change their minds if they continued to hear and see what the rest of us hear and see.  But it is what it is.  I am grateful for my years of experience in the field of elder care so I know more than many people who are faced with a similar situation and I have a few more resources at my disposal.

Mercy

And so we practice mercy—certainly the people who live around her continually show mercy in practical ways.  I do the physical work while I’m there in her home, I clean (which upsets her but keeps her more safe), I cook beautiful enticing food (that she often can’t taste or recognize), I listen to her spiraling anguish (which goes on and on) and do my best to relieve her anxiety and redirect her to more peaceful thoughts. But the rest of the time I’m praying and searching for better ways to help her and keep her safe.

I’m not Catholic, but I set great store by many of the teachings of Pope Francis—no matter if you’re Catholic or Protestant or somewhere in between you will find that he does speak universal truths.

Last November he made a statement that went straight to my spirit, my heart.  I am one of those who feel gifted for works of mercy, and whenever someone speaks about mercy in new ways I listen.  I have his words on the desktop of my computer so whenever I open it I see …

 Now is the time to unleash the creativity of mercy, to bring aboutnew undertakings, the fruit of grace.

 He wasn’t necessarily speaking to adult children of aging parents with dementia, but the words certainly spoke to me.  There is so much power and movement here—unleashing indicates that something has been restrained and that it’s longing to be freed.  Creativity speaks to all kinds of empowered movement across the whole spectrum of the human experience. And beautiful mercy, so often thought of as only gentle and quiet, meek and mild is now shown as a power ready to break out allowing us to do new things that still, in the end, point back to grace.  Powerful, innovative, creative work that makes way for kindness, compassion, and care that meets needs and changes the world.  Sometimes it means pushing against the norms, envisioning new things, and taking risks in real life, other times it means being quiet and meeting needs in a way that is relevant only to the person on the receiving end.

That’s what I want.  I need more of that kind of power unleashed for me, in me to find the way to get the best care for my struggling, lost mother when it seems like every avenue of help is closed.  I need that unleashed power to better fulfill any and all of the life tasks ahead of me. I need that power to see and begin new things.

And so I pray and listen, ready for the next step.

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Summer

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The glorious moments of summer can save the day.  I’m ready for them, I breathe them in, especially this year while working under heavy loads of responsibility shadowed with sadness.  These joys require little besides the ability to receive them in the moment.  They are health giving; life sustaining. Gifts.

These are mine: Brilliant blue skies and white clouds, bright blooming flowers, fields of grain nearly ready for harvest, a small town 4th of July celebration with children crowding to pick up candy tossed from old cars and firetrucks in the parade, dinner under the trees, the perfume of nectarines ripening in the kitchen, long light-filled evenings, windows and doors open at all hours, putting fresh strawberry jam in the freezer, hearing the birds, friends who bring extra fruit and produce to the door, a movie in the park, ice cream, fans to keep the warm air moving, laundry dried on the clothesline, snow on the mountains, 72 colors of green in the forest, tomatoes ripening on the vine, watermelon, watching a pair of Northern Flickers enjoy my backyard, the encouragement of friends.

I am grateful.

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A Beautiful Day Away–With a Surprise

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Yesterday I celebrated my birthday (a few days late) with a trip to Olympia, Washington with my daughter.  It takes a couple of hours to make the drive up Interstate 5, with scenery that helps to melt to stress away.  I enjoy many things about this town—its waterfront, the proximity to the Olympic mountains, the small town feel with all kinds of interesting places to go, and the beautiful buildings and grounds of the Washington State Capitol.

We went to our favorite place for lunch—excellent food, beautifully prepared, and served in an artistic setting with a beautiful view of the water and the busy marina.  Afterwards we wandered across to the Farmer’s Market which is housed a welcoming and easy to navigate barn like building with more booths and stalls and a performance stage arranged outside.  There are so many wonderful things to see and think about in that barn.  We were amazed by glorious flowers and splendid displays of vegetables and herbs.  All kinds of handcrafted goods called us to see and touch, and we enjoyed talking to the artisans about their work and methods.  We bought a few things: seed packets for heirloom flowers, a 16-ounce bottle of Worm Tea, a concentrated plant and soil conditioner made with worm castings, and a blue lace-cap hydrangea to plant, and I’m still thinking about placing an order with a clay artist for a custom house number sign.

As we went out into the sunshine we had to walk between giant bins of beautifully fragrant apples to get to a coffee stand.  If there was a perfume that smelled like those apples I would wear it.  It was magical.  Just a short distance on my daughter spotted the coffee stand and I saw the happy surprise I didn’t know I was looking for: Poems, Your Topic Your Price.  A young woman sat at a table just large enough to hold her small manual typewriter, with her earned money going into a large sewing box at her feet. I absolutely could not resist.  I asked her about business and she said she’d been pretty busy all day.  I asked about typical topics and she said the range of requests that day had been wide and varied although love was generally the most popular on any day. And so I said yes, I did want a poem.  My topic would be cooking with spring produce, and I would like a mention of rhubarb please.  We agreed that I would pay after I’d heard the poem, and that I should come back in ten minutes.  Deal.

Poetry in Olympia

Clickety-clack, type, type… I was back and it was done. She asked if she could read it to me first, and she held up the small piece of card stock and read:

Shoots rise,

crisp with spring waters.

Leafy greens unravel

magical secrets

of clean blood.

Stalking the rhubarb

to fill the pie,

sweeten the sour

with strawberry light.

Alchemy

of the reborn Sun,

foods forgotten

in winter’s long passing,

steaming fresh as bodies transform

into summer joy.

Seven Bremner/www.yourtopicyourprice.com

I am so happy with this rhubarb poem. I’m going to frame it for my kitchen as a reminder of the great fun of writing on the fly, and of a beautiful day unfolding just when I needed it.

Nearly a Month Ago

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Nearly a month ago I boarded a train and headed many hours south, expecting to be back home in a week or less.  My stepfather had passed away fairly unexpectedly, and since it was still winter in the mountain passes the train seemed like the safest and most stress-free option.  I traveled in the nearly empty Business Class car, shared a table in the dining car with three interesting people, and generally had a good, but long trip. 

Nearly a month ago I arrived at the snowy small-town train station, and was greeted by a brother in law.  It was after midnight and the train was more than two hours late.  And that was when normal stopped.  The forty-minute drive was like listening to a travelogue of the previous ten days with my mother and stepfather. An old woman with dementia, who had been beautifully loved and cared for by her husband and who proved her inability to live on her own while he was in the hospital.  An old man who was very sick from a previously undiagnosed disease, who was given great hope and believed it, until all the sudden it was the end.  It was sudden for those gathered around his bed and for me who took his regular phone calls, but apparently not for him.  He spent the day before he died giving directions, discussing financial matters, making sure his family knew what he expected of them in the coming days: love God, love each other, and get along. 

Nearly a month ago I arrived at my mother’s house in the middle of the night and found a woman who looked much older and more frail than when I’d seen her three months before.  Her confusion deep, and her memory much shorter than I could have imagined. Her clothes were not clean and she’d lost a great deal of weight.  In her husband’s declining health he had not wanted to admit that he couldn’t keep up with the responsibility of her increasing dementia.  All I heard in our regular phone calls was that they were doing okay. Everything is okay, don’t worry, we’re doing fine together. 

Nearly a month ago I boarded the slow train of dementia.  Even though I am well-trained and experienced in the art of patient, calm interaction it has required the constant work of quiet self-discipline and prayer.  The anxiety, great delight, anger, quiet hours of silence, panic, repetitious questions and comments, paranoia, amazing confabulations, hurt feelings, contradictions, laughter, and the never-ending feeding of indoor and outdoor pets fills the days and evenings. All of it in slow motion because fast movement, fast talk, fast action, fast anything fuels the upset and anxiety.  When she says, “I wish you’d just relax,” she means please stop moving. Come and sit still.  I sit still for as long as I can, looking out the window watching the quail, doves, red-wing blackbirds, sparrows and their friends coming to eat the wheat she puts out for them more than once day.  Then I get up and move again. 

Nearly a month ago I prepared food only for myself unless I invited friends over.  Here I make sure three nourishing meals make it to the table everyday—fresh, colorful, appealing food served in small pieces to make it interesting and easy. 

Nearly a month ago I packed a suitcase with enough winterish clothes to last for a week or so.  I have to wash and re-wear them so often I’m afraid they’ll be threadbare soon.  I’ve been into town often, 30 miles each way, having forgotten what it’s like to shop for a week to 10 days at a time.  Every time I go check the stores looking for a few new pieces to augment my meager wardrobe.  So far one top that works well with a cardigan or without.

Nearly a month ago I was looking forward to watching the daffodils and tulips bloom in my yard for the first time, and to see the cherry trees blossom in my neighborhood.  Instead I’m watching the daffodils and grape hyacinths just starting to bloom here in mountain elevations, with light snow still coming nearly every day. 

Nearly a month ago I could never have imagined simply walking away from my home, my friends, my church, and my job.  I sent an email to my office and said I was taking a leave of absence.  I sent a group email to my praying friends and told them where I was, and a message to my neighbor.  Soon I will go home for two weeks. And then I will be back to see if my mother will finally agree to let someone come in to help her.  Maybe after two weeks of friends and family coming into help it might seem a new normal and then it will be okay.  I can hope.

 

 

 

 

 

 

February 12 – 19

It’s interesting to me how dates, or symbols look so innocent on a calendar when the actual living of them can take a person to edges of who they are.

We reach our edges for many reasons, but it happens when we are stretched past the norm emotionally, mentally, physically, and spiritually, exposing new thoughts, realizations, or clarity.  Sometimes we see deeply personal and long-felt pains come to life and resolution when hope had become a blurred shadow seen only by God.  Other times we see that piercing, crystalline essence of life in something simple, yet painfully profound. And on rare occasion we are brought into the presence of some joyful exuberance that was never part of our life before and it leaves us wondering, what if?   What if I had had the freedom to experience joy in this way before?  How would my world be different?  And the list goes on. 

I realize that not everyone thinks or lives like this.  Some say it’s a special gift, or that it’s the province of sensitive people.  Maybe so, but it’s no less real for belonging to just one type of person, gift or not.

Many people have found ways of staying grounded during these stretching and sometimes overwhelming experiences.  I saw and felt the edges of my life several times between February 12th and 19th.  It was one rolling experience after another—for eight days.  In these short and intense bursts of time I took time to talk and think with God, out loud, while I touched and handled real things, tangible things with color and texture, and light. I worked with my hands, and I experienced beauty.  Somehow that process does it for me—this is how I stay grounded.  It encourages growth and brings introspective calm, it allows me to come back to center after experiencing some of the unsettling mysteries of life, both joyful and heartbreaking.  And later I can see that my life was enlarged.

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During those eight days I prepared for a celebratory Valentine’s Day dinner with a group of single women friends.  We have found our way through some difficult times through the years, and have always chosen to honor one another and the faith-bond that connects us. This year I set the table with many colorful and beautiful things that belonged to generations of women in my family.  And again we chose honor and love even though some are at opposite ends of the currently fractured political spectrum.  My love for these friends runs deep and the harmony we choose and experience, especially in hard times is more than beautiful. Hard won love takes me to the edges.

Along with a small group of friends I went to a concert at our city’s performing arts center.  It was not something I would have ever chosen, but this Naturally Seven concert took me to the edge of my musical experience with a mix of expertly and joyfully done rap, hip hop, jazz, and more.  These seven men have mastered the art of inviting the audience into the music. When the second or third piece of the encore finished my friends and I looked at one another, all asking different forms of the questions: What was this? What have we just experienced?  This was too wonderful.  We left in amazement and are still talking about it. We were changed by it.

Out of the blue I received a phone call from far away with the surprising second-hand news of a relationship being restored, exposing deep emotions and memories of years of loss. And in the same breath was given the nearly unbelievable hope or vision of something new being born—because of loss and because of forgiveness.  The initial events were so long ago that the only other person who understands the value of this news is the person who is relating the story.  I am utterly stunned.  All I can do is think and talk with God. I am overwhelmed at what this means. 

Acting as the advocate-support for a terminally ill friend I hear every part of her life exposed in a matter of fact way. I felt I should have been pained when the questions were discussed about allowing others to handle the details of the most personal aspects of her care, or about the plans for the disposition of her body.  But instead, it was the simple question that was an afterthought by comparison: How often do you trim your toenails?  In that moment it seemed like the most intimate exposure of her essence. And I was taken to the edge with the crystal clear picture of her, where she’d been and where she was going.

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I facilitated and later participated in a very significant meeting that had the potential for being successful or disappointingly bad—no middle ground.  I put hours of thought and prayer into my preparation.  I talked with several of the participants ahead of time to gather their input and so we would all understand the goals and the questions.  I gave it my all, spreading myself so thin, transparent in my hopes and passion for the matter at hand.  Others responded in kind, and now we see each other differently.

And the last, on Sunday afternoon I went to a local theater with a friend to watch the broadcast of George Takei’s Allegiance.  A family’s story of their experience in a Japanese internment camp during WWII.  There are many things I appreciated about this production—the music, the acting, the details of camp life, and the overarching themes that fit into every family in every era of time.  Love, fear, courage, acceptance and the bitterness of regret, or the regret of bitterness.  It works either way.  The opportunity for forgiveness is golden. Don’t let it pass you by.

dscn1868Throughout the whole eight days I was either preparing for the Valentine dinner, or I was washing, drying, polishing, counting, and putting away. Enjoying the way the light was shining through the amethyst glass, loving the weight and feel of the crystal, appreciating the balance of the silver forks, knives, and spoons. Talking and thinking with God, wondering at the benefit of these large experiences, thinking about who needs to know and how I will tell the stories when the time comes.

Sun, Fresh Air and a Bargain

A couple of weeks ago we had a sunny Saturday. I was recovering from the deadly flu with little energy to go on but I was desperate for fresh air and sunshine.   I didn’t have the mental energy for wandering or driving aimlessly so I decided to head across the Columbia River to Ft. Vancouver National Historic Site with a purchase in mind, and with the opportunity for a quiet, manageable walk in sun.

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I don’t think I’d been to Ft. Vancouver in the winter before, but as expected it was not crowded, and was interesting and very calm even with the sounds of the modern world in the background. The wind was brisk, the sky brilliant and snowy Mt. Hood provided a magnificent backdrop.  Most buildings and exhibits were open for self-guided tours, but there were living history interpreters working in the blacksmith and carpenter shops, and a guide available in the big house.  This site holds special significance for me as a fifth-generation Oregonian.  My predecessors came across the Oregon Trail in 1845 and stopped at this Hudson Bay Company outpost before going farther. We know quite a bit about their journey, but I’ve often wondered about the relief they must have felt when they finally arrived at  a welcoming, hospitable place after such struggle.

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I will admit to not being overly excited about becoming a Senior Citizen, but it does have its rewards.  Buying a Senior Pass was the small purchase I had in mind for my visit. The Senior Pass (available in person at federal recreation sites or online) is one of the best bargains in America.  https://www.nps.gov/planyourvisit/passes.htm For citizens and permanent residents age 62 and over, $10 in person and proof of age  will buy you a lifetime pass to 2,000 National Parks and other properties managed by five other agencies: Forest Service, Fish and Wildlife, Bureau of Land Management, Bureau of Reclamation, and Army Corps of Engineers. This pass will cover a total of four adults arriving in the same car, and children are always free. $10, for the rest of your life!  If you buy online or by mail the cost doubles, but even then it’s a stellar deal.  It’s important to note that the cost of the Senior Pass is scheduled to go up this year, with the actual roll-out date not yet confirmed.  Once that happens the pass will cost $80.

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Go out, get some fresh air and see the country. It will make you feel better.

 

Winter-Fatigued

At this stage of the game there’s hardly anything more beautiful than blue sky.  Blue sky, no wind, and balmy refrigerator-like temperatures in the 40’s.  Bliss.

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A few days ago a  report hit the internet saying that Portland could be the most winter-fatigued city in the country for the 2016-2017 season.  Five storms in five weeks, pushing and keeping us well beyond our winter norms for way too long. I would be happy to step up and accept that Most-Winter-Fatigued Award on behalf of everyone who lives in the part of the world.

It was exhausting, stressful business, especially for women who like me, live alone.  On the home-front it took vigilance to keep my pipes from freezing, and near super-human strength to dig my car out, shovel my driveway and sidewalks and then help my elderly and disabled neighbors do the same. I’d go to work on very dangerous roads and come home to shovel more, including digging out another car and getting it to a safe place. I missed one weekend day of driving my car and it refused to start again. AAA was days away from being able to respond to my call because of the area-wide state of emergency.  Because the car was dead in my driveway they suggested I wait at least 3 days before calling again. 

I am blessed with friends who are willing to help where they can, and it felt like it took a village this time.  Vera picked me up for church on Sunday morning and returned me home.  Kay came over with her battery charger which didn’t perform well for us. After a time we moved on to jumper cables, and were spectacularly unsuccessful with both attempts working in that 15 degree wind-chill.  Vera kindly returned to take me to work on Monday. Cindi ordered a Lyft car for me to get to a memorial service during the work day. While at the service friend Lori asked if she might have my car keys to give to her husband so he could have a look at my car.  The battery was not cooperative so Doug called his mechanic son-in-law for consultation. Finally the car started.  It took so much help to make one normally simple thing happen! 

My struggles were easy compared to some of the women who work for my company; many of them single parents who are just making it.  Their cars wouldn’t start, or were unsafe for driving on ice and snow. We ordered Lyft cars to get them where they needed to be so they could work, and we did the same for those who usually take public transit. Some stopped in at the office for various things, in pain from the cold and worried about what was going to happen next. It was a frightening time for people living on the edge, and lonely and stressful for many having to manage on their own.   

Reading the winter-fatigue article this morning actually made me feel better—it was validating. The difficulty was real.

Today I’m sure that all of Portland feels the hope of good days ahead with the blue sky, sunshine and balmy temps.  The weather people say we have a week of sunny days coming.  I for one am very, very thankful.