Monday, September 27, 2010

Take mom to work day II.

Well, our story continues with the absence of the homestay student, the unavailability of a neighbor to mom sit and the nature of the husband (He abhors change, wants to be the extra advisor at youth group and is finished with the mom watching)  results with me hauling mother across the city, sandwich in hand, as a the last minute tag along to the worship I was scheduled to lead at one of the colleges.  I am so lucky that the coincidence that it was parents weekend allowed it to be okay that this funny old stranger was part of their small group worship. To be fair mom's stories, although pure fantasy now and shared as fact ,are entertaining. I only cringed a little when she sagely told them how she was inspired to be a nurse by roller derby.  She only has difficulty telling stories when she stumbles into reality. Her fiction is flawless.  It was not quite disastrous though it was by Grace alone that we got through it.

Obviously I cannot keep dragging mom with me to work. 

It is raining and I am wanting to hibernate. Avoidance has been working so well for my family. Just pretend it isn't there and it won't be, right?  Perhaps I am a bit angry just now. Even though I have hours of undone, time dependent tasks to be accomplished at my campus jobs, today just cannot be a work day. Oh! the expletives I stuff inside. And there it is.  My new alarm clock. Mom is up...gotta go.


Sunday, September 26, 2010

growing to hate Sunday

The best laid plans...This was to be a big church day...then my sister who was scheduled over a month ago for this opening Sunday called last night.  She got sick. I was OK, and even understanding until she said,"you didn't have anything did you?" Yes, I had something.  I had a lot of something and SUNDAYS are not days off for clergy!   Now it is a wake mom up-get her dressed-cook breakfast-launch her to the Baptist church with a willing ride provider-get in my car-go late to my church for the first service-stay and work for half of the coffee hour-get back in the car-drive back home-catch mom when she is dropped off by the same willing driver-feed mom- get her settled until the hubby gets back from the second service (where I am going to be unfortunately conspicuously absent) get back in the car-return to church for the bi-monthly meeting of my campus ministry steering committee-get back in the car and go home so I can let the husband get back to his planning for Youth group tonight (which is scheduled the same time I am supposed to be preaching at one of the colleges)-morning.  I am tired just thinking about it, and that only gets me to 2PM. I am counting on my home stay student or a neighbor (yet to be contacted) to be the home monitor while I work at a College in the evening. Still better than an all church day that ends with mom with the flu. Sermon for my day? We only think we are in charge of our life. Ummm..God? Why Sunday?
Oops...gotta run.

Wednesday, September 22, 2010

and why not? Take mom to work day

With caregivers unavailable I found myself with mom and work appointments at the same time.  It was Alzhiemers awareness day and I was stuck.  I had a bimonthly staff meeting at the hospital and a peace day vigil to accomplish, neither of which I could really miss or get a sub for. So, I dressed in purple and brought mom with me.  Surprisingly, we had a pretty good, if occasionally awkward day.
Today was not just International Peace day, not just the Spring Equinox, not just Alzhiemer's awareness day, I added one more!  Welcome "take mom to work" day.  A bit of a switch since I was younger and it was "take your daughter to work" day, but everything is topsy-turvy now.  Thanks, Grimelda, for purple sprinkled donuts, understanding supportive colleagues and interesting times.

May peace prevail on earth.


Sunday, September 19, 2010

After respite, panic

After a month of planning and an incredible amount of finagling, I managed to get 48 hours of respite.  This time it mostly worked.  It fell apart in the last three hours and now I am up in full blown back spasm and pain. Panic has returned to me.  Pardon me but...WTF?

Too much stress so I chose carefully my respite activity this time. I went away to B&B and for a spa day. That was wonderful. I had massage, body wrap, a manicure, pedicure a facial and my hair done. It was so nice to be taken care of and pampered.  I took a dear friend with me who was also a good caregiver. She did all the driving and helped with the planning.  The B&B was a little tired, but the innkeepers were pleasant and the gardens beautiful. I spent way too much money and never really had a good meal,(just bad luck mostly) but the company was good and for the most part the trip was very relaxing.

It is hard to get away. I got a phone call at least once a day to help with some detail, but the stress level was much less. My one big regret is that I didn't get to see my daughter. We almost made it but had to let it go at the very last minute. That is the source of most of this pain I think. My disappointment  at not getting to see her.  Daughters and mothers, what a job we do on our emotions with this amazing love relationship! She moved out permanently just a while ago (7 weeks maybe) and yet I miss her warm yet snarky presence constantly.

  Seeing my daughter in our plan came at the very end, like dessert. It was to be a short visit, no more than a hug, a tour of her classroom(she is a teacher now) and  a chance to feel her in my arms.  I had to cancel it and come straight home when my caregivers son was hospitalized and she had to leave.  My family members were not around for many good reasons involving life and there was no family back up here.  My best support, she who calls me PW, my friend from the caregivers support group and life, came at the drop of a hat and stayed with mom till I could return.  I am grateful.  But I am in such physical pain tonight from grief, I cannot rest.
I feel as if I used up everything I had to get away only to come back into a well of anxiety and pain. pain pain pain. God, take this sadness, this heartbreak away. Fill me once again with your love.

I fell asleep finally at 4:30.  I got up at 7am and we are back to the routine again.  I am planning a way to see my daughter now.  I hate exhaustion.


Tuesday, September 7, 2010

I speak the silence of midnight

I am once again drawn to writing to calm and restore myself after a trying few days.  The heat of summer has finally broken and the chill of midnight, wrapped in the occasional sprinkle of soft rain has soothed my anxiety.  Odd that it has also energized my insomnia.   I feel a call to write when I am finally silent.  It is as if there are words and images forcing themselves to the surface and if I do not release them somehow I experience pain.  It is often  I am seemingly forced out of bed and elusive sleep to put carefully plait my words, weaving them into life in a journal or on this blog.

 I love to write.  I love to craft vivid images with words and play with metaphors. I bliss out with good storytelling. I also love to read.  I am surprised I have been reading so much non-fiction lately as I usually prefer novels, mythologies and poetry.  I enjoy falling into a story, tumbling into the lives of the characters, seeking their meaning out of the adventure and holding their joy, pain or tragedy as my own.  I can escape, or just hide in a book, feeling safe. Glorious!I find it odd, that at this stressful time, when things are often grief filled and difficult, that I have not picked up much fiction.

Maybe I have enough adventure in my daily existence just now. It occurs to me that possibly I have been driven to understand this altered life. I have somehow internalized that if I just know enough facts about something I will understand it.  Perhaps that is one reason I have not been writing my own fiction much lately. (Fibletts to my my friends mom excluded) This reality is surreal enough.  Who needs to make something up when daily life is so fantastical?

So now I think I will try to see what meaning will come with this non-fictional adventure story.  It is a romance, a mystery, a thriller and horror filled tragedy. Sometimes it is funny and sometimes farce.  All genres are embedded within this tome.  I have started reading a college friend's memoir.  Perhaps indulging in this next art will help me learn yet another method of meaning making.

My friend from the Alzhiemers Caregivers Support group and I were driving home from a visit with her mother who is afflicted and struggling.  My friend and I had been talking for most of the drive home. I made some silly trite comment like "One more successful visit, One less day to do this"   when she said "How does this end?" All became silent. I know how it ends and so does she. Forgetting, death and grieving.  What we don't know, perhaps the real question is "What happens next, and how do I prepare for it? How can I survive and find peace with this?" 

Alzhiemers is a book to read with your finger on the last chapter.  It makes it easier to hold onto what is still there in spite of the losses when you know it will be gone. Hold on, the story is yet to unfold and the meanings and understandings come later.

And now, my heart is calmer, my mind at ease, sleep finally returns my affection. May the calm silence of the wee hours enfold us all in gentle slumber. Thank you, Grimelda, for this lovely night.


Monday, September 6, 2010

Sugar is sweet and so are you...

I have been engaged in a continual "debate" with my mother about food. Her dementia is increasing, but her memory is not deteriorating as quickly as I had feared. On top of her dementia, she has really brittle diabetes. When she moved in with me, she gave me the task of planning her meals and monitoring her blood sugars. The numbers in her head "don't work" anymore and she was having a really difficult time doing it herself. I had no idea how difficult that would be. This has been challenging indeed. Mom isn't exactly cooperative. She is a very picky eater with a bizzare palate and has a voracious sweet tooth. There are simply only so many liverwurst on raisin bread with tomato and Miracle Whip sandwiches a person should eat a week in my opinion! My refusal to give her daily donuts and ice cream sundaes has met with much resistance.
When mom's sugars are off she is coo-coo. After she has been on a roller coaster with her sugar, highs and lows that are typical for her, she comes out "less". My heavy hand on her diet in spite of her protests has stabilized her numbers. I am her food bully now.

When I saw this article in the Cherokee Phoenix about unstable diabetes and dementia being linked I felt affirmed. It has given me the perseverance to continue to "bully" her into good eating. Meals have become a very unpleasant activity. I know I am not alone in finding the role reversal of caregiving a failing parent challenging. But honestly, tuna fish with nuts, apples, craisins and sweet pickles, mixed with miracle whip and spread on crackers? EWW and ICK.

If nothing better comes of this than that I control my own sugar, it will be worth it. But I admit, I hope by controlling hers I can slow down the progress of this disease that is eventually taking her.

Help me find better places to hide the emergency candies and the sugar packets. Keep me from purchasing donuts by the dozen even if it is cheaper. Grant us all the ability to be satisfied with "mildly sweet" and the fortitude to stick to it under duress and massive guilt tripping. Let me once again take a lesson from the earth. Raisins and prunes are both sweeter than the grapes and plums they come from, but just look at them! May we all settle for sweet enough.

Persistant irregular blood sugars increase dementia chances - Cherokee Phoenix

Thursday, September 2, 2010

a different route

A realization emerged from my foggy head tonight. In my grand effort to find ministerial balance I lost my way. Over this year I have been stubborn. I have been trying to run this life according to my own personal notion of what should be right. My biggest problem, I was wrong. Is it any surprise that I kept coming up against the roadblock of my own expectations and human limits?
I gave up after becoming exhausted and supremely frustrated.
I wanted so much to make it ALL work according to some controlled plan that I was blinded to what could be.
So now,after much definitive action and financial finagling, here I am, all rescheduled, hospital hours diminished, students returned to campus, congregational leaders at home carefully included in the circle of knowing, and the caregiving helpers engaged. It looks as if all has smoothed out and the chaos is contained.

But there was still such grief. Such sadness, gloom and doom hovering in the air. My life had become mourning and I yearned for some colorful happiness in the mix. I had quit enough. Lost enough. Torn down enough. Surrendered it all to the chaos of creation. Behold the holy spirit moving in the world. Grimelda to the rescue. I made a leap of faith, answered an ad for a student seeking a homestay, and now with rejoicing, life! Youth, all growing, building, learning, truly vibrant,has moved into my spare room in the form of a young man attending high school classes far from home. His excitement and sense of adventure wakens us from our self centered nightmares and brings out our loving parenting best. This caregiving I know and understand. This I remember how to do with fondness and competence. And it is not just I. All the attitudes of my resident family has also taken a turn towards happiness. The fog remains, (curses on Dementia), but the energy has improved. All of us loved being parents and our homestay was looking for just what we needed to give.

So, I work less at the hospital, but am still there sometimes. I have new students and work at the campus with much excitement always there in the first weeks bolstering my energy. Our student likes us. His family likes us. ANd it is a mutually beneficial pairing. Mom loves having another young one around to tell her stories and worry about.
Life is not just balanced, it feels good.

I know that all is fluid. All is changing, but just now, this minute, awaiting the onslaught of a hurricane...I have balance.

I am going to sleep well tonight and dance again tomorrow.
Thank you Grimelda.

Tuesday, August 17, 2010

Letting love loose

My transition from Hospital chaplain to occasional fill in chaplain has reached its calendar date. The students return next week. I have but three days to regroup before they arrive, hungry and excited. Hallelujah! New Life!

What a long summer this was. Tonight I listen for the rain's return. The heat was dire. All my unshed tears now dried to salt. The arrid dust fills my nose and eyes, my long lost garden turned to seeds and chaff.

Gentle rain, my songs have been too silent for too long. Let the sun drenched soil, and my own parched spirit, be renewed, refreshed and sanctified in your holy blessing. After this drought that has somehow mirrored my own grief, let this baptism by sprinkling renew my soul in hope.


Monday, July 26, 2010

accepting help

Under great stress I go to the hairdresser. Don't you? So back from my latest wedding gig, I go for a "do".

No words. Very tired. (Messy) Said "help". Got some. (Lather) Feeling better. Still silent. (Rinse) Getting perspective. Said "HELP". (Repeat) Some things just need time and attention. Some need action. And some just are.

Resting and being is helpful.

Just tired. Thanks. for the help. For the break. For the moments of clarity. For the time.

I am never this silent at the hairdresser. I dare not say it aloud. The terrifying truth. Only in heart does that spectre burn. Horrifying is my reality. In the middle of the ceremony I forgot the groom's name!

Someday my words will return, unlike mom's. Is it stress? Is it menopause? Is it ... "IT"?


Please...let me find my words again. Let this be anything else. Once again that niggling fear. Always there. Like the dull hum of cicadas in summer heat. The distant rumblings of thunder echo on the mountains. The storm may never come here. I still smell the wind, and get prepared.



Friday, July 2, 2010

and another option....

Today I played. Really played. A good friend from life is also dealing with elder care stress and today we played. Both of us got in my car...drove to the big city and spent the day doing the tourist things we did a lifetime ago with our young children. This time, instead of their wiping noses, making a mad dash to the bathroom so they could get to the potty on time or avoiding the noisy exhibits so as to minimize whining, we went as ourselves. I still wiped noses, my own. We still sprinted to the bathroom but this time I only had to keep track of myself! And we went to the lightning show and actually watched it. I laughed! I feel better too. This was a really fun time. I have been trying to balance without all the parts in play. Work and play!

Thank you Grimelda. That was a great day!
Amen and halleluyah.

Thursday, July 1, 2010

redefining normal

Today was really difficult. I left my mom in the hands of her extremely competent caregiver, a lovely woman from Ghana that I found through an agency, and escaped. I am not sure when exactly it became so difficult to be around mom during the day. It could be when she began fighting me about everything. Suddenly it seems she disapproves of so much I do, or try to do. She complains about the time I spent at the hospital.Now it is also about how I make toast,or planted flowers, even what friends I chose to see, when and how often. I struggle to understand why this conflict.My guess is it is akin to frustration. It could be her ever increasing competency losses, and all that represents. It could also be the lingering wisdom, buried under all her aggression and confusion, that I desperately need and we cannot access. It could be the new behaviors she cannot change yet that I find embarrassing, extremely inconvenient and emotionally draining. It could be that I have just gotten tired always being questioned.

At any rate, it has become unpleasant for me to spend long periods of time with my mother. Her needs seem to always trump mine until I lose myself in her care. I know that trap and am trying to avoid it. What is worse is it isn't just her needs but her every desire that has become mine to fulfill. How did this happen? Maybe it is because I have begun to resent not getting to eat food I like, go to church unencumbered, Or even decorate my home as I like. New normal now has negated my ability to plan my day without a power struggle. This is all so very new, and now constant. It wears me out.

So...I bought some time from the caregiver and I went back to work. I first went to my campus job, always slow during the summer, where I enjoyed lunch with four newer to me students. It was surprisingly odd, as what had been a pretty stable group of religious seekers just a few weeks ago morphed into an eclectic band of unknown anxiety ridden lost souls during the summer months. It was different, but still good. That filled three hours. After the campus lunch I went to the hospital getting a few precious hours of hospital time in while my extremely competent replacement is being oriented.

I am nearly out of my hospital job. My ill colleague has returned,still very shaky, from her extended leave. I cannot help but worry for her as I think she came back before she was ready. When I decided I had to leave this particular chaplaincy a mere six weeks ago myself and gave notice of my intention to be releasing the position to my supervisor, arrangements were made and my replacement hired. She began work the same day that my ill colleague returned, just a few days ago. As NewCHaplain is being brought on board I agreed to help the team and do a few more hours while she is brought up to speed.

As I enjoy the day I become aware of this trap too. I should have just left. It was hard to leave and the seduction of the ministry is strong. I love the work so much and my willpower is weak. I have friends there and with mom I am extremely isolated at times. I worry I will lose my balance again and would continue in this bad job after leaving if they only ask.

A few hours more, seeing patients and helping with office clean up, navigating the computer programs and explaining subtleties of hospital policies and politics, I am once again on my own and headed home.

Oh great spirit,help.

I am surrounded by folks that are better at what I do than I am. In theory that is good and normally I would rejoice to have such great colleagues. And actually I do! Right now, I am just so sad. I have failed in my heart, somehow, to be the caregiver I wanted to be, and that mom needs. I have failed to balance things enough to keep a beloved hospital ministry going. But mostly, I have failed to maintain the connections that I need to stay strong in my faith.

Grimelda shows me the traps of this thinking. She reminds me things are meant to change. Normal is fluid by design. When I stumble the ones who are given the gifts I drop are grateful and all is not lost, just different. Mom likes her caregiver. Her caregiver likes her. She enjoys her work as much as I enjoyed mine. The students will return, always new ones anyway, in September. New Normal can also be good. As River changes its path, it is still a river. All stages of the tree are beautiful in their own way and many depend on it to thrive. Change is neither good nor bad. It just is, and that is glorious.


Tuesday, June 29, 2010


It has been weeks since I could find my voice again. Deciding to leave my hospital job drowned me in self loathing and defeatism. I could not move either way. I was stuck deep in the quicksand of surrender.It is a lonely, frightening place.

What changed? How have I once again found a way to write my soul? Many little things and nothing. Mom has progressed along her terminal road. My hopes of hanging out and just being with her have simply dissolved. Now I long to sit with the ill and dying for a break from her.

Save me from myself Grimelda.

Friday, May 21, 2010

Call Waiting- Call Forwarding-Wrong Number?

I indeed feel in the desert now. I know there is life here too. Not the green familiar. No. Not the lush blooming delicate flowers. Not the soothing green forests. Not even the wet mud of melt and infernal buzzing of bloodsucking insects! This is more than summer. It is an internal climatic shift. My life mirrors the world around me after all.
I must learn from the lizard, the tumbleweed and the baking rocks. Find that new beauty. Right now it just feels dried up and cooked.
After two months of covering for the absent full time chaplain I am cooked. I kept cutting the hours, moving them around, dividing them up into smaller segments, and even so, I cannot make it work. The pay is so small as a per-diem employee that my take home is less than I am paying the caregiver for mom. The reality that I am paying to work, literally, has finally lifted the blinders. I am leaving the job. It makes me sad. I am fighting the grief and building resentment. I also know there really is no other option for me that makes any sense and that makes me angry. So, will I go back when mom progresses and is gone? Will I go do some other chaplaincy that is perhaps more manageable? Or, hope springs eternal, better compensated? Will I just give up? Right now, I don't know. I do know that this adventure is over and it is time to let it go. I loved it while it lasted.
Go with God, hospital chaplaincy. Rest in Peace.

Wednesday, May 5, 2010

self care splatter

I fell off the self care wagon. I have not kept my promise to myself to write everyday. I have been sleeping. That is good. Probably. I have been mostly eating right. That is almost true. I am taking my vitamins and one medication more regularly (almost 50% compliant)...I suppose that is progress. I have been working too, too much.While rewarding spiritually, it is draining physically and the time to be....vanished. That has been problematic. I have missed therapy, my women minister's support group, my denominational ministers group, my standing monthly lunch date, my friendly breakfast gathering, two appointments for doctors. The two retreats I promised myself, one after the other. I am late to everything. My dog and cats have not been to the vet or groomer. Mom missed a follow up eye exam. I didn't even make it to church for six weeks unless I was preaching.

I think I have answered my question. No. I cannot do it all. me to release what I must with joy. Aid me in halting my headlong dash towards exhaustion. Teach me to love choosing myself sometimes. Care for those I must let go to do that. Help me grieve this loss without hurting those around me in my ambivalent pain.


Friday, April 2, 2010

a fear filled glimpse

I hear the abrupt coughing of either Mom or my daughter break a silence that, until now, has only held the sound of cats scratching their ears over refrigerator hum. The information overload of the day has unsettled me. My recent sleepy bliss is once again punctuated with unsought midnight ramblings. My mind will not still.

I began the day with mom care as usual, but she is getting weary, trying to do too much all at once after being so very sedentary for months. I find myself unable to ignore her coughing, her hairball clearing snorts that must be the result of our family cold, the spring pollen, the overstimulated senses and just too much icky in the sinuses. Mornings are long and quite undignified lately.

This one was much the same. I made the coffee, I wrote out her calendar, I put together her breakfast and prepared my own satchels for a day of work. When the aide arrived, I left the home behind and went about my workday as planned. I went first to the Alzheimer's care giver's support group meeting where we were scheduled to have a speaker. I have arranged to be on call off site so that I can attend these meetings. That has been working well for all. I have given up, at some point, the idea of only doing one thing at a time. I am unsure how to change it back now, to focus things more, or if I should even try.

Before I went in, my cell phone rang. I have been trying to close a communication loop with my stricken friend through her husband for four days. It was him. Turns out she is far more ill than I knew. The stress of the work we share, coupled with inadequate support and self care has resulted in a serious health crisis. It looks like possible burnout to me. My heart sinks. There really is nothing much I can do for any of them. I will do what I can, and for now, that is not much. I pray. For her. For her family. For strength and for faith. For guidance. (Are you there ,Lord?)

I go in. The regulars are remarkably missing. The speaker is quite good and the resources shared are excellent. The new folks that have come to the presentation are varied in their relationship to the disease. The gathering includes people who are just beginning to deal with a recent diagnosis, or with the fear of one as their beloved or they themselves struggle with memory issues. I didn't expect to be the veteran in the group. Revisiting those early times, listening empathetical to their stories, I notice how very far mom and I have come already. Yes I am tired and at the moment writing away my insomnia, but we have managed to navigate quite a few of the crises of the early stages already.

I hear again, with recently pricked ears, how important it is to take care of the caregiver. Fueled by ravenous determination, I pick up pamphlets and business cards, and ... my beeper goes off. LOUDLY. I am immediately filled with undeniable anger. I don't want to go. I want to stay with the caregivers group and be fed. But that is not the plan I made. It is the hospital and I answer.

I pray my way down the street to the parking lot. I pray my way to the emergency entrance. I pray my way to the bedside and , indeed, now I am here. Now I am the chaplain and now my prayers are with the patient and her family. This is immediate. The need is intense and just having "the chaplain" here eases the tension in the room. My anger is gone. It isn't me. It is "the chaplain". By answering that call I observe the workings of Grace. At this moment it is clear! This is what I am called to do. How can I give this up?

Afterward, grabbing lunch from the snack bar, I wonder. What is the price I pay for being a caregiver? Can I stop, even if I choose to? Is it humanly possible to do all this? Will I too get hauled off in an ambulance for giving too much away? What will happen to my coughing family if I do? And then the BIG FEAR sneaks up. Will I also get Alzheimer's?

Yes. I am afraid. It was pointed out to me that the opposite of fear is NOT bravery, as I had previously believed. The opposite of fear is faith. To keep faith strong, like a muscle, it needs exercise. I exercise my own faith with prayer. The way I am praying lately, I could be an Olympian. I am also, slightly aware that I think this is sort of crazy. Let's face it, I talk regularly with an invisible being. How different is that from someone who talks to a six foot tall invisible dinosaur named Grimelda? If being this prayerful is madness, then it is this divine madness that will have to see me through.

Precious creator: I seek Comfort for my dear friend in her pain. May she know that you are with her, and myself, as we both struggle to keep ourselves together. I struggle to care for myself. Grant me sleep, and good sense. Restore us all to health. But mostly, help me to keep my perspective, my balance and my center. I celebrate your precious gift of time with mom and my daughter, my loving husband. I also appreciate the gifts of compassion I have experienced through Grace. May all of us move forward renewed in our faith. And say hello to Grimelda for me.


Wednesday, March 31, 2010

making hard choices

For someone who has no full time job I sure am busy! It is spring in every sense of the word. The rain has finally slowed leaving the rivers flooded, the basements puddled or worse, the air through open windows is damp and warming, the smell of wet is everywhere. The spring cold that I claimed was allergies has proved me fallible. We have had the whole family coughing for days now.

It is currently holy week and there are church events ever few minutes! The Hillel students have taken over our religious house to create a campus wide Seder, meanwhile the Christian students are scrambling to get to the various houses of worship for mass, Maundy Thursday, good Friday and of course Easter. The palms from last Sunday are braided into crosses, the matzoh from Monday is stacked on the shelves, the rooms are triple booked as every religious club on campus hosts a big event. Where did all these hard boiled eggs come from? All the while, in the background, is the slow drum beat of terms impending end and the pre-grieving of seniors having one last party, one last concert, one last festival. Spring is the most conflicted term of the academic year.

Meanwhile, @ job number two, the hospital. The full time chaplain, who is both my colleague and my friend, was taken suddenly and seriously ill last week. She is now out on medical leave for an indefinite amount of time. The rest of the pastoral care staff have asked me to cover for her during her absence. I am conflicted.
I have been trying to figure out how to balance just one day of hospital chaplaincy and care giving mom for months now. How in the world am I going to do this full time for a few weeks, or possibly months?

Job #3, the church has given me room to breathe. As a back up minister for them, the Sr. minister takes over for the holidays. Thank you God, in so many, many ways.

Now for job #4. Mom. She is finding her new church exciting, but she too is struggling. Everything at my house for the holidays is different and nothing seems to make sense. She is growing more anxious as she tries to do more things with outsders (a good thing) and cannot keep a calendar or a clock in her head (a bad thing) not to mention phone numbers, or names of folks. She is trying so hard and is so frightened underneath. I wish it was different. I try to ease things but it is next to impossible to fill a bucket that has no bottom. I pour the information in and it just has no place to land. She remains thirsty in spite of the constant flow. I have hired the home helper to come all week, just to get us through, but what is next? How long will this last? When is the next plateau?

I spin, I spin, I spin. As it is, I am so tired I allowed myself to get run down, resulting in first me then everyone else getting sick.

It is time for me to get set for class as today is a campus day, but I carry the hospital pager "in case". What in the world will I do if it actually goes off during class? I am not the only one that needs a better plan. But I definitely need a better plan

Creator, lead me as I am turning endlessly in circles. Amen

Thursday, March 25, 2010

get well soon

My husband takes all these pictures. His eye to my heart.

Wednesday, March 24, 2010

Back to Work

The work pressure is on for me as the calendar doesn't care if I have time and as I have already lost two days to this cold. I went back to work today before I was well. I am sorry. I feel doubly bad because the woman I pay to help with mom was just hours past a bout with food poisoning herself. We both were at the Dr. yesterday. Mom's aide had called in sick yesterday, but feeling well enough last night, had come in weak but no longer "ill". My nose had quit running, I still cough though. Dilemma for both of us: No work-no pay. As independent contractors, we don't get sick days. I could not reschedule my meetings, I could not leave mom alone, the aide was sure she was not contagious, the students are going to come plan for the upcoming holidays and there is not a substitute for me, so with the promise of mutual low functioning and safety first,(love that Purell!)we made a pact. Mom's aide would do little besides make sure mom was safe.
I would guard my coughing and go to work. I would just keep the meetings low key and beyond coughing distance. I also promised everyone to return as soon as soon as I could so that we both could get back to bed. It was the best we could do. Mom seemed to be OK with it, so that is what we decided to do.

Honestly,sometimes I feel Mom would have me stay with her 24/7. I cannot. As much as I love my mother, and I really do love her, I also love chaplaincy. I feel alive to be out there, doing what I do. This day was exactly one of those days. By 10 am I was helping Hillel students plan their Seder, it isn't easy juggling the responsibilities of kashrut and academics. I had already joyously accepted the invitations of the GSA students for the Pride dinner,and I was looking forward to having a quick connection with a protestant student that had wanted to talk about her boyfriend when my cell phone went off. I thought it was about mom so I answered without looking. It wasn't.
I unexpectedly was called to another site, a place where I had been singing hymns with mom as a volunteer, to help someone we just barely knew. In between volunteer clergy, they had found themselves in urgent need of a protestant clergyman. I responded to the emergency call, and by 11 I sat with an aged severely ill woman and her family as she, having taken a sudden turn, prepares to die. The Spirit descends and surrounds us all. Silence. Her unique dying process begun, her beloved family gathering from distant homes,together we share prayers, blessings and amazing grace, the mystery of her passage remains, her final days or hours surrounded by the love she built over her lifetime. It is palpable, her legacy the devotion shared,The grace of awareness among her family and caregivers, Hospice at its best, this blessing I witness and hold in gratitude.
I relocate again. It is 12:30. I must return to school. Class is at 1. Discussion is lively, the energy of Spring and new adulthood fill my heart. As I leave after class I realize I missed lunch. I go home at 4 to find my caregiver already gone, relived by my daughter who has come home early from work, herself sick. She has a cold. She is too ill to drive to her own home. She wants to stay here and be taken care of. There goes the rest of "my rest". I cough, finally, relaxing. This is Home. As I reheat last night's chicken soup, find a Popsicle and pour a glass of juice for my adult daughter, Mom says,"Did you get all your stuff done?"

Yes, mother. Yes, today I got all my stuff done. And I am tired. I am taking tomorrow off. We will take the financial hit.

Great creator, Thank you for this amazing life, bless the young and old in their fear and frailty, hold us all as we find our way through, and may we all be ever aware of your constant love and care. May the love we share be constantly returned, and may all of us be surrounded by Compassion when it is our time to die.


Tuesday, March 23, 2010

making myself sick

One of my favorite poems has always been first fig by Edna St. Vincent Millay.

My candle burns at both ends,
it will not last the night,
but ah foes, oh my friends,
it gives a lovely light.

Somehow, I always felt that I was somehow immune to that extinguishing. My double wicked candle was going to burn endlessly by the force of my own will! Wrong! I find myself doing next to nothing right now. I am home sick. My nose and tears have been running for four days. When I allowed myself to get too tired I got sick.

I wasn't sleeping enough. I wasn't doing enough to care for myself. I gave too much away. I would tell my kids not to do this. I would not let mom do this. And yet...

So I am lucky. My nose is red. My throat is sore. And I am finally resting and renewing. The next step is to make different choices next time. This could become a much more serious problem, like heart disease or depression, if I do not pay attention. Mom's disease is long term, progressive and eventually terminal. May being her caregiver not follow suit!

So thank you Creator for giving me this lovely red nose, these chapped lips, this sore throat. My skin will heal and my behavior can change in time.

I am going back to bed, and sleep.


Friday, March 19, 2010


Coming out of denial is a bit like the melt. Back in August, when we were able to pretend that mom's reason for living with us was all about blood sugar and economics, everyone could paint a picture that was pretty, if cold, of our future life together. As the seasons changed, the leaves turning and then the coming of snow, we could still create those idyllic visions of extended family togetherness, protecting each other from the encroaching frost and winter darkness. But snow is a cold liar. It covers up and hides ugliness with each gentle accumulation of temporary beauty. Now the rain has washed away that snowy denial, and we see what is lurking underneath. What remains is dead, broken, messy and ugly.

It is Springtime, or nearly so, and the snow is melting. All that remains on this day are a few solid icy piles, the remnants of ancient plowing, now protected from melting sunshine by layers of sand, dead pine needles and their massive volume. Assisted by all the rain last week the snow pack of winter has mostly disappeared, transforming the view out my window from a postcard winter white sparkling silence into a raucous cacophony of life, emerging from a overcoat of hidden litter and neglect. Overnight this winter wonderland has morphed into a fascinating conglomeration of filthy, hard ice encrusted with random bits of rubbish and decaying leaves. Where road sand doesn't cover it, the matted grass of the lawn underneath,now revealed, lies compressed, dead thatch. Life is glistening under muddy standing water where waking grass is clearly sprouting green.

This beloved lawn is pocked with the ancient telltale yellow circles, hidden all winter and returning with the melt, proclaiming that a dog lives here. Bits of ravaged feathery papers and loose bent empty cans that have been salvaged from the recycling bin by the lonesome critter seeking self entertainment, now rest encased in the stubborn ice, preaching the unheard story of long lost puppy toys and persistant creative fun. Here and there we can see the still broken branches, the shattered limbs of an old storm remaining, testament to natures violent protests. In short, it is sunny, warm and really looks dreadful out there.

Spring is not all crocuses and daffodils. Spring is this season too. This season begs us to nurture. It wants us clean up, to rise and work outside, tidy up, prune the broken bushes and trees, rake the turf, remove the thatch and sand. Do all this to stimulate the new growth. Early melting beckons us to regain order. Somehow that window will once again frame beauty. Outside will eventually become a garden, a place of flowers and life again, but for now, it is that unique season, "Mud season", where the hibernation of winter ends in a groggy, angry, hungry pout.

When I look at our lives I am seeing mud. I must struggle to see the hope under all the broken bits. Instead, I see that hard ice that still won't let go of the bent cans, holding onto those useless bits, oblivious, just a little longer. I put all sorts of effort into cleaning up the actual yard, and together we all will get it clear. Soon, or at least eventually, we will be welcoming the strawberries right off the vine for breakfast. My metaphorical garden, however, is more difficult to clear this time.

Those broken bent, empty cans of lost capacity will never work again. The recycling truck does not return what it takes and neither can I replace my mom's lost functions. To try to is just to litter the garden with trash. As much as Easter cries for it, resurrection is a miracle, and the hope that revives with spring growth while inspiring, does not heal the broken trees. Life goes on amid the brokenness. There are still buds, but there is also deadwood. I struggle to remember that it can still be beautiful when it isn't all new.

As an arborist is trained to cut out the dead and diseased wood to restore the tree to health, I want to remove her dementia. I suppose that is what we try to do by treating her and ourselves. I cannot help but notice there is still a hole in the tree where the deadwood has been cut. You can not bring it back. That is just the way it works.

Perhaps, I have over worn my metaphor. To put it plainly, I find that just as I want the grass to grow green, the fruit trees to flower and the roses to put out the new shoots that prove, once again, that life survives winter, I want my mother to renew, to create new cognitive growth of some kind. In this Spring of progressive dementia it seems there is all too much winterkill. There are now great holes when you remove the diseased parts and I worry that, come summer, there will be no shade. It is too soon to tell how much damage there has been, but there is no denying it any longer. It is a mess and there are fewer buds on my family tree this Spring.

Great Creator, we are yours in all seasons. There is so much brokenness. I fear being lost in the shattered wood.
Help me to glory in the warmth of the sun, let me once again love to see whatever green returns, feel the promise in buds swell, and savor Spring with the birds as together we rejoice in song.


Thursday, March 18, 2010

Finally the quiet

I have been trying all day to get my head around my sermon for Sunday. The day begins so early and I actually got a great many tasks for work done today. Even so, I have not yet completed my service. I kept telling myself when things settle down I will be able to concentrate and get things done. It is finally quiet and it is also almost 2 in the morning. I have to be up with mom in just a few hours.

Clearly, I have been fooling myself that I can ever find the time to get it all done. Now I must learn a new way to write. A new normal has come again. I adjust once more. I hope this is like training for a sports event. The more you bend the more flexible you become. The more you work to exhaustion, and then allow for recovery, the stronger you become. But the flaw with this metaphor is that i am not getting the recovery time. I am not resting. And even the best athletes have limits. I am approaching mine too quickly for comfort.

I am having a hard time letting go.It is so silly. I know I need to sleep. I know I need to rest my body. I desperately need to rest my mind. Yet it is so difficult for me to let her go. I want to let her do for herself what she can, but what is she safe doing alone? I just don't know how to tell. The constant concern steals my concentration.

Still my worried mind. Grant me wisdom enough to help in the way she needs it. And Help me care for myself with at least the same diligence I care for her.


Wednesday, March 17, 2010


I do not like that I am always late.

Tuesday, March 16, 2010

so much happiness

In spite of broken major appliances, torrential rain, darkness, cancelled parties, and missed deadlines, mom and I had a pretty good day. Even if she can count the bills from the bank but not be able to tell you how much money there is, we had fun getting out, and she could still count. Even if her inability to find the word she wants is frustrating, we had fun playing the charades that got us to understanding.

No way to cook? We went out to eat. Too much to get a handle on, so we didn't. We survive. Some days you just can't get it all done no matter what. This was one of those days. Tomorrow could even be better. In the mean time, there were smiles, tears, festivity and lots of rain. For now, I will look for rainbows in the morning. Sleep now and the Maytag repairman will come in the morning, enforcing normal. It was good to grab the fun while we could. May we have more days where the fun outweighs the grief.


Monday, March 15, 2010

blog time

I was unable to blog for three days now. Part of it is because I was too tired. Part of it was because I was not at home. Part was because I did not have Internet. Mostly it was because I was never able to be alone. Ever. I have these overpopulated times pop into my life from time to time, when my mom has had a rough day, when my in-laws are needy, or my husband feels neglected, or my children are having a difficult time. That is when I have to struggle with every ounce of my being to keep some time for me. This weekend was such a time. It is now late Sunday night, actually Monday morning now, and I am getting to write for the first time since late Thursday night. I am amazed at how much I missed it.

I have only been keeping this blog for a little more than a week. I was surprised when I realized I was craving writing, like chocolate or potato chips. I am really beginning to feel a difference, not just in how I cope with balancing care giving and work but something much more profound is happening. It actually makes a difference in how I face the next day. If I take the time to clear my overwrought head and release the confusion in my heart, if I force myself to put all those words into enough order that sentences form and coherent thoughts appear, my stirred up self quiesces.

Clergy are taught in Divinity School, if not other places, the necessity of keeping your own religious life healthy outside of your service. When I have been particularly down or disheartened it has been nice when a colleague has asked me "How is your prayer life?". I was reminded repeatedly during my training about the importance of keeping ourselves intact by maintaining some type of regular spiritual practice.

I used to go to church, participate actively in the congregation, and join in choir and women's groups. I loved the teaching of Sunday School and preparing and studying for classes, and later sermons. Now that my work is bedside, my prayer life is even more obvious and the frequency of spoken and corporate prayer becomes manifold. One would think that since I am living the religious life and praying all the time that my own spirit would be satiated. It isn't.

I have been needing and saying to my loved ones that I need to get away and get myself right with God again. So much has happened that I simply cannot keep up. There is so much grief. So much fear. So much anger that I need wrestle with, I have been trying to get away from everything for a week at least, so I can work it all out. That would be lovely, wouldn't it?

Life isn't made that way right now. So, here it is, the gift I missed. While I was looking for a retreat week away, some organized intensity of experience to purge my disease and fill me with spiritual ecstasy, I accidentally (really?) found a spiritual practice that almost fits into my daily life in its new form. Out of curiosity and insomnia, I Googled my name. I was astounded by the hits. I had over 143,000. Most of them were old newsletter articles or sermons published on the websites of former congregations I had served. Some were old announcements of classes I had taught or workshops I had presented. What surprised me though was how many times people were quoting me in their sermons, or on their blogs!

I am sorry, I am just not that quotable. The words I read were indeed mine, but old. I don't even remember the context of some of them, but my own thoughts on those subjects had evolved, while the words had apparently remained set in time. That night I decided if I was going to be in a blog, I should be in my own. I think it was a mixture of righteous indignation, hubris, loneliness and a dash of desperation that spurred me to post that first post.

Now, I find to my dismay, that I don't want anyone to know it is me that is writing. The words are public, yes, but the conversation is between my soul and the universe, a prayer life that is immediate, from my whole self to the whole of creation, knowing that as I type and post here, I cannot ever deny or take it back, even should time rob it of context, these thoughts are the core of something holy, something that has touched my life, and hopefully yours as well.

The blog breaks the loneliness. It gives voice to the strident hopes and boisterous wishes even as I diligently weave them into submission and control with my keyboard. This is the deep truth of my life. Everything I do ultimately becomes a prayer.

Bolstered by that insight, gained through grace and google, I can once again face a life that is indeed too full of giving, too brimming with grief, and way too busy. May grace continue to surprise me and may the love it breeds overwhelm us with joy!

Friday, March 12, 2010

making time



One of the most difficult transitions for me is when I must come home after working at the hospital. It is my job to go quickly to the bedside of dying patients when the pager goes off. Sometimes the person in the room is unconscious, intubated and surrounded by machines and staff carefully keeping them patient as the inevitable takes them away. Other times the call is because a person has just gotten bad news, or they have decided it is time to quit fighting. I am called for the families, to help them through the crisis of losing their beloved. I am called to the bedside of the elderly man who is sinking slowly into oblivion, alone and afraid. Sometimes there is a crowd of bereaved. Sometimes there is no one.

I never know exactly what I am walking into when that beeper goes off. We are there in pastoral care for any patient, no matter how ill or hardy, to provide spiritual support during their stay in the hospital. Unfortunately we are spread very thin and often only have time to see the most critically ill. I am there to accompany, as far as any living person can, people as they die. Most of the patients in the hospital get better and leave. I don't usually get to see them.

Everyone eventually dies. It is what happens. Sometimes people come to the hospital to get better and sometimes it becomes clear that health is not in their future. They have come to the hospital to die and that is when someone will page the chaplain. We come to sadness, shock, grief bringing whatever god they have to focus, sometimes by just introducing ourselves. I am awed by my job. I encounter that amazing mystery of life and death intimately almost every time I go to work there. I worry that my job can make me seem rather creepy. I can't talk about individuals or details about what I do during the day so I am forced to rely on generalities. When someone asks "how was work today?" I can say it was good or fine. But really, what does that mean? I find myself hiding behind euphemisms to maintain courteous conversation.

I work differently as the hospital chaplain. When I am doing that holy work I am totally there. I can and do shut out everything but what is happening right here and now. These are also the days I work the most hours in one place. I cannot be constantly checking my phone for messages from home. I found early on that breaking the day up so I could run home and feed mom Lunch was making it impossible for me to really function at work. The jarring of center, of identity, was spiritual whiplash. It was for those days I was working the hospital that I first hired someone for mom. It has helped.

Today's chaplain work was pretty easy, almost all my patients were in one unit, folks were very ill but my case load included mostly folks who are going to recover and go home soon, something that I don't ever remember happening before and in fact no one died on my watch, which is also quite rare. Usually I come home with adrenaline pumping, jumping out of my skin at the beeper on my hip, and my heart weary from holding so much grief.

Mom had said to me yesterday during one of our long talks that she really hated when I came home from the hospital because I was mean. Apparently my "chaplain" persona is not bubbly and welcoming. When I think of it now, I am not surprised. But for mom, all she sees is that I left before breakfast, left her with a stranger she likes but doesn't want to need, and I come home tired and short tempered, whining about having to cook dinner. She had expressed that when I am like that she feels like I resent her and want her to leave.

Well, D..n.

I don't transition well from that intensity to the jocularity of pizza and "American Idol". I need more time, more downtime to move from point a- to point z. I tried today to express that need by telling mom I needed fifteen minutes before I could start "home". It started out OK. I fell asleep during the TV show. When I woke up, now able to be at home, she scolded me and sent me to bed. When I didn't go, she did. I guess there is no way yet for me to not be mean.

Well, when there is no hope of fixing it, you call on the chaplain to bring god. I am paging the Great Spirit. Hold us through these transitions, comfort our pain and bring us ever closer to your peace.


Wednesday, March 10, 2010

there must be a sermon in there somewhere

Today was one of those days in which I totally lost my balance and splatted on the hard pavement. Luckily no one is hurt, (At least I don't think so) but my pride is bruised and my inner competence meter bent if not broken. This eclectic work day I struggled fruitlessly to get lots of the little things done. I wasn't trying to do any big projects. I have a couple of those waiting for Friday.

An academia day during Spring break, this day with just one meeting on the calendar, was mine. This was to be an administration day. I was planning to use this student light day to catch up, clear my metaphorical desk. Silly me, I had a vision of normal clergy work, just simple things, like correspondence with congregations where I am scheduled to preach, or phone calls to their music directors, follow up notes with colleagues regarding board works in progress, paperwork for reimbursements from the treasurer, short little e-mails confirming or declining engagements, all things that previously took less than an hour or two of my day. In my fantasy I would use the time when mom's helper was caring for her, to restore some semblance of order to my professional mind space.

Well, at least I had a plan. At this point none of this is complete. That I expected otherwise considering the decisions I kept making along the way is testament to my delusion. Having Mom here has changed everything.

I am beating myself up because I did not get my "work" work done. My first thought is that, perhaps, if I changed how and where I tried to accomplish things it would help. Right now I have created the new habit of doing clerical things in places that were not designed for such activity. I began doing this because I needed to be in the same area as Mom to keep an eye on things. It seemed logical that I could do some of the computer work that I have always done from my home office by multitasking in the living room on my laptop. I was naive. It hasn't worked yet. My files are upstairs when I am downstairs. The composition is always interrupted, at least once,and my concentration is perpetually split, unfocused and, of course, fails. I fell behind. I began to cut corners, leaving things "good enough" only to try and save time. This "Workus Interruptus" had me missing important elements, and consequently I ended up doing nothing appropriately or even remotely on time.

This tends to make others unhappy.

After several months of trying to make things flow smoothly, I surrendered. I just got too frustrated. I was getting increasingly stressed as it seemed that the addition of Mom to our lives had opened up every anxiety on the planet. In retrospect the anxiety was probably mine being reflected back, but as a result all my little part time jobs began to suffer.

My identity is tied so thoroughly to my ministries,this chaos of careers in jeopardy untethered me. I was holding on to every thread of my former life, every fiber of denial, shreds of ripped relationships and the strings of hopes that would never be realized. The unrelenting storm of this disease was twisting them all into a rope to strangle me. I was lost.

I called the Alzheimer's Association Hot line. I cried on the shoulder of the angel that answered the phone. I got help. Thank God! Each strand of information, each affirmation of this new reality, each connection to another caregiver veteran brought me hope. When the packet of brochures and scientific articles arrived in the mail I devoured them. I began to see what was happening.

The chaos was actually real. I couldn't fix it. The disease was not going away. I was not going to be able to deny it any more.

When she moved in I was having difficulty making sure mom was safe as I did not yet know what she needed and she was having trouble. My house was flooded with all her belongings. I had not wanted to cause her any more stress by forcing her to give up all the contents of her apartment as well as the location of her home, so I had the movers pack everything and put it in my garage to be unpacked as we could, bit by bit and sorted here.

I didn't, however empty my own house of our own detritus of long residence before she arrived and so there was really no place to put anything. We then spent the first couple of months moving things about, trying to incorporate her treasures into ours, the goal to become one family. Great idea that seemed right at the time. Add dementia. Order isn't part of her skill set anymore. That is the hardest thing for her now. If it is going to change, those of us who are not ill have to do it for her.

We started by clearing out her room of anything she wasn't actually going to use in there. She lives in the room that used to be my office. My office is now in the room that used to be my sons. Most of his things are gone with him, but not all. My house is so cluttered,almost all in my home office, with things moved out of the way that I cannot even find my desk, let alone clear it.

So now, here I am trying to make order out of this chaos. I was beating myself up because I didn't get my "work" work done. But I did. I forgot my other "work", that of being mom's executive function. Today I did not get the e-mail done because I signed her up at the gym. It took us four hours from beginning to end to help her get the membership, the helper and she oriented to the protocols of the facility, to get her acquainted with the water exercise instructor, signed up for the class, and home again. She wants and needs exercise and she needs the safety of the helper or me with her to accomplish that task.

So, today we created another little bit of order in our universe. I forgot that on top of my official ministries I have another. A full time one. I only thought I had the one scheduled meeting after all. It is Spring break. Even the Biblical God took a day off. Now there is an inspirational story of wrestling chaos into order! Today the balance tipped to mom. It will have to do. And I need to rest. Tomorrow is a hospital day and the balance must shift there.

Great spirit, help me remember that all ministries are sacred, that work is just one way it is expressed and that rest, and recreation are also holy.


Tuesday, March 9, 2010

after hours

The wee hours of the night have become my sacred time. When sleep has finally claimed the household, dog and cats, people are snoring, now I hear myself think. With each keystroke breaking the silence, I feel myself returning. The noises of the night have become my waking lullaby, bringing me joy with each barely audible hum or gentle sleepy purr.

For now, no one is needing me. For now, I am free. Welcome gentle night, I don't want to waste you sleeping. I want to be held in your silent solace. This is a good time for being.

I hear the house creak, softly, as if it is relaxing too. It is still too cold outside to have the windows open, and yet I can hear the trees outside, waking from their long winter sleep, preparing for their glorious resurrection of green, not long from now. Trees wake slowly, yet tomorrow, in the warmth of the day, I will see their nights work in the swelling buds.

When I am not so busy, when the darkness finally slows me down, I find that I feel the world more deeply. I like it. I want to remember it in all its subtle detail. The timbre of the cat's snores, the tiny scratching sound of the mouse that must be behind the wall. The mouse too has found this time to be safe.

I know I should go to bed. I should get some sleep. The sun and the raucous birds will wake us all in just a few hours, triggering mom's broken inner clock. The morning will start her reveille. Not bugle calls but water running, throat clearing coughs like hairballs, inner doors opening, my startled dog barking, and the sound of the cats fighting for her lap as she settles loudly into her chair will rouse us, to start the morning, to anticipate her needs before she stumbles.

Yes, I should go to bed. But the "wee hours" are so peaceful. I am loathe to relinquish this heaven, this glorious silence, just to feel a little more rested for what is bound to be another day of inevitable fatigue.

Why must we waste the best times sleeping? I type the question to the universe, a prayer of frustration. And my soul responds, "All times are the best times." And so sweet world, I will rest in your gentle quiet, and go to sleep. May my rested body remember that "all times are the best times" when I wake.


Monday, March 8, 2010

caregiving circle

Ahhh. Monday! Today is my day off. I get one, and only one, every week. It has been my day to have sabbath and recharge for years now. I long to sleep in, call friends, poke around the house. Do Nothing. Recover. Recharge. Renew. After a week of sitting with the ill and dying, being present for the questioning soul and preparing sermons, I long and need a rest. I have built my ministry around that one day of renewal, holding it sacred so that I can effectively serve.

Mom took care of her mom. Now she is need of care she lives with me.

Monday. This morning I awoke to the sound of her shutting the door. Not ever a good alarm clock! She had let the dog out to potty,(bark at the school bus) but in the process let both indoor cats out as well. She is awake. She decided to try and make coffee for me, something she has not been able to do for at least a year, and discovered (again) that she was unable to accomplish the task. By the time I managed to get out of bed, grab my robe and race down the stairs she was weeping.

All She wanted to do was take care of me. That is what mom's do. But she could not remember how to do the simplest tasks. She could let the dog out to bark, as she says, but that had not worked right either. She had lost her precious cat trying to help with the dog. As she was tearing up,sighing her helplessness into her torn tissue, the alarm went off upstairs. It is now 6 am.

Good morning mom. Don't worry. Go get dressed. I will take care of it.

I re-made the coffee. I found the cats and gathered them indoors. I stop myself from sitting on the couch and answering e-mail from work. ( I have a deadline for a newsletter at noon that I put off last night) Breakfast must get served and Mom settled first. I feed the dog, also the cats, pour a cup of coffee for both of us from the still brewing coffee maker, (I love the auto stop drip do-hickey) and taking a banana (so she can take her pills) and the very hot beverage back upstairs, I find her, sitting in her recliner, petting her cat, (How did that cat get up here so fast?)" I got my banana already". Ah. Well at least that worked out for her. I go back downstairs and make the eggs.

It is the little things after all. Thanks mom, for your wish to take care of me.

Over breakfast she asks the same questions every morning. Today is no different, if a little earlier. "Get the paper?" "You need to feed these animals!" "Where are we going today?" "Do we need to fix those people today?" (This is how she refers to my hospital chaplaincy) "You need to get dressed." "Where are you going to be today?"

We go over the calendar again. This is when that appointment is. This is the day I work at the Hospital. This is the day that I teach at the college. This is the day of the support group. This is the day of your haircut. "OK"

"Did you feed the animals?""Should I go get the paper?" I go get the mail and the paper and she settles down to read.

I do the dishes, take a shower and get dressed. Twenty minutes for e-mail correspondence. I almost make the deadline. A quick prayer for forgiveness and the phone rings. "Are you free to officiate a wedding in July?" Time for lunch. (Already?)

I make arrangements to meet the bride and groom next week, and then prepare lunch.

"Did you get all your stuff done?" "What time is my ears?" "You need to read this article I found."

We go to the audiologist. We just make our appointment. It is a beautiful day outside. I want to sit in the sun and read a book. "Is Coldwater Creek around here?" "Is it far?" I was planning on meeting a friend for coffee while she napped this afternoon. "I want to see that skirt." She is not napping today. We go shopping.

The women who try to help us are baffled. I am giving her size so she can try on the clothes she has been wanting in the catalog. Isn't that why we came? She only wants to buy me clothes. "Mom,I sit with the dying and their families. It is a special time, but not a party. I wear my clergy clothes. I am not going to wear bright beaded clothing even if it looks good on me". She loves the skirt. She has no money anymore, long ago spent on her mother's care. Maybe she wants me to have it because she cannot. Perhaps it is one more time she is trying to "take care of me."

I finally get it. This is retail therapy. I buy her some new clothes, including the bright beaded skirt. She is so happy. " I have been wanting to come for two weeks. About time. Ever since we got that catalog."

That was two days ago mom. It is time for dinner. I call my friend. "Sorry about missing the coffee, next week?" I start dinner while mom finally takes a nap. As the potatoes cook, I settle down to my computer to catch-up with myself.

It was a good day? Perhaps. My rest day is gone. I never saw my friend. I never cracked a book. I didn't get enough sleep. I am still tired. What happened?

Mom went from tears to smiles. I now have one more memory of my mother to hold onto. We also have some new clothes, including a very loud beaded skirt.
Grant us both sound sleep and rested feet, and enough wisdom to NOT wear that skirt to work.


Sunday, March 7, 2010


I have always been sharing my identity with another person. I was a partner in a competitive sport with my brother as a child. I was the assistant or associate or co-chair or you name it professionally until just recently. I have been the wife, the little sister and a dutiful daughter; all identities which define me as my relationship to another. After a lifetime of being somebody's partner, I have become accustomed to being co-dependant. It is as if I don't know what I want until someone else tells me. I have grown rather weary of constantly explaining myself to others only to have them tell me I need to figure out what I really want. I am finally listening and taking it to heart. As a codependent person it is revolutionary for me to put my own personal needs and desires first. For we folks struggling to affirm our autonomy being self centered is a holy act. Let us pray.

So much of what plagues this planet is beyond my capacity to understand or impact, it can be overwhelming. There is so much tragedy and suffering out there. There is danger behind every exhaust pipe and potential apocalypse in every human disagreement. For starters, I want the world to be a bit more compassionate and a whole heck of a lot kinder. I want people to be treated fairly in both the workplace and in the home. I want to recognize the holiness of care-giving, to reverence the wisdom of patience, and to allow ethical behavior to take precedence over power and money. There must be a better way to live life than the one causing all the emptiness and fear I see all around me. I am not the world, but I am a part of it. I want to be part of the change the world needs.

Big dreams for an individual person. Yes. I do dream big. Pretty pictures of redemption and glory, where all beings are calm and happy. I also dream small.

My small selfish dreams are more tangible, and akin too often to nightmares.
Sometimes my small hurts seem quite minuscule in perspective, yet they cloud my ability to think clearly, and consequently, work on the big dreams. So many small, spiritual injuries pile up and make an insurmountable obstacle to soul clarity.

Hey people! Picking up my pitchfork, let me shovel some of this spiritual dung out of the way. Let me clear a path to functionality. I want to stop being the one others can always depend on. The price of such dependability is too high. I want the freedom to sometimes say "no" when I am asked to work on the days everyone wants off, (like school vacations and holidays) without fear of losing the work at any time. I habitually do what must be done, when others with more power can or will not. I want to feel good about that choice or make another one. I am tired of being invisible when the easy and fun stuff is being handed out.

Sometimes it is even more concrete. I don't want to cater my own support celebration, just because it was on the calendar for months, expectant people are coming, fork in hand, and everyone thought someone else was doing it. No one remembered to order the cake. Co-dependant me bought the cake myself and served it to all. While I refuse to apologize for feeling disappointed, I also refuse to keep doing such ridiculous favors that harm me while helping others.

Ah...I see a little light over there now. What is that stinking, steaming pile over there?

I work several part time jobs. Someone said to me that in one of my work places, part timers are invisible. I have indeed found this to be true. It is bad enough that we don't get benefits or access to what our even half time co-workers take for granted. We know where we stand when we don't find out about the office celebration until after it happened and the pictures are published in the newsletter. In solidarity with my fellow per-Diem and contract colleagues, I will say something. I will no longer collaborate in my own marginalization if I can avoid it. May I say, "ouch."

My that one had quite a few flies...But it is already beginning to smell better around here. Is that something over there? It looks mighty familiar.

Hello family! Please notice that I help with, or purchase, every one's holiday, birthday, anniversary gifts, yet the people I help get all the thank you notes. I should not care. I am embarrassed that I do. I think perhaps it is because I have allowed myself to be invisibled again,even at home. Now, how to fix that? I will add my name to every "from" on the gift card from now on? I put time and effort into choosing that gift because I cared. Perhaps I should stop doing the gift shopping until I feel like caring again.

In the mean time, my dear ones, I don't need the stuff. Mostly, I really don't need the social lies. Gifts are a concrete expression of our feelings at best and an annoying obligation at worst. The whole gift giving thing is way out of control. I now have a huge file of rain checks for forgotten presents from family members, handed to me sheepishly with the words "it is on back order" or "it hasn't arrived yet" that end up never redeemed. Those excuses are becoming a shrine to being forgotten and I do not wish to worship there.
When giving a gift causes pain, don't do it. Just say, "I didn't get one" and let it go.

Smell that? Much clearer. Who knew we just needed to vent the stink out of room? But wait...It is still hard to see the way forward through the bulk ahead, even if the air is clearer, the pathway remains cluttered. How do we stop the piles from coming back? Change!

So...I am calling in the rain checks. I am saying "No Thanks" more often. Alas, I am an altruistic person by nature and do get good feelings when I help out. What to do? Now, I will decide when I need to step in and help and when I can just say no. Let's refuse to be used. It hurts, makes me angry and I don't like that. It is finally time to begin practicing the fine art of Independability!

Perhaps, what I want isn't a great deal different than what most people want. I want to be the protagonist in my life's story. My autobiography is supposed to have me in it at least, isn't it? It should have my voice in it by definition. For my sanity, I need to be the protagonist even if the story isn't about me. Otherwise it would be someone else's book. I want the people I am talking to, or writing to, actually paying attention to me, funny quirks, odd opinions and all, not their projection of who they want me to be. To do that I have to change my patterned behavior. Only I can break my own bad habits.

I am, after all, going to be the protagonist in my life's story. It is a good place to be interconnected with others lives. Relationality is a positive force and worthy of anyone's energy. That said, I don't want to come to die and realize I had lived my whole life only as character development and background color for someone else's saga.

Write your life. I will write mine....Then we can save the world cooperatively.


Saturday, March 6, 2010


When I turned 50 a few weeks ago I crossed a threshold. I felt I had finished something and was entering something new. It was all very fuzzy and mushy and trite, but it was also quite real. Through choices I have made in my first 50, I have created a life for myself that is too full, too intense and frankly, occasionally quite unpleasant. I decided to take a real good look at my life and figure out what I wanted to do with my last 50 years.

Let me look. I take care of a whole bunch of things all over my life. I am a mother, a daughter, a wife, a sister, a friend, a chaplain, and the person in my family that has been the "goody two shoes", choosing the "right thing" without too much thought. My mother is ill, she has dementia among other ailments, and has moved in with me. I am now her primary caregiver. My children have moved away and become independent individuals. I have been working out in the world, helping however I can with finances, since I was thirteen. I have had many different jobs and some careers, in myriad fields with various levels of success and failure. In the last 25 years I have been following a call to the ministry. Thirteen of those years have been as an ordained minister, and now a chaplain. At this moment in time, my faith is very strong, my calling intact, but my clergy career is quite confused. The work I have found is, in many ways, non-traditional, in that is no longer based inside the church building, but at the bedside of the ill and dying, or in the classroom. Maintaining the balance between all the different aspects, and locations, of my ministry is a challenge I have yet to achieve.

Though I am privileged to do meaningful and soulful work, my income is constantly under threat of collapse, an unfortunate consequence of years and years of compromise in order to put my husbands job and my family first. In retrospect, I like most of my past decisions, but not all. I like my life now, mostly. Truth: I am tired, sometimes, with a fatigue that far exceeds my stamina. Perhaps the most frustrating aspect of my life, and one source of my fatigue, is the nagging reality that my life, because I am a caregiver, is not just my own. I am living in a whirlwind of transitions and it is time to take advantage of the chaos, and create. This blog is my own account, my narcissistic adventure perhaps, into that chaos, in the hopes of finding guidance, answers, a little glimpse of a clue, what to do next. I have chosen a life of service, but I am no saint. I have a driven need to survive as well. Let it begin.