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.