Caring for the Care Partner

You are wondering why a picture of this book?  It just happens to be by my favorite author whom I am going to greet up close and personal this Wednesday when she arrives in Houston her usual nervous wreck to sign this wonderful book.  I hope to get more copies to give to everyone I know who struggles with life.  And who doesn't?  It life, right?  It doesn't come in neat, tidy little packages, only in moments, just moments, one at a time...sometimes they are tiny, full of joy, sometimes long hours of grief, sadness but Anne's point is that we must be authentic in all of them to find meaning in our lives.  To find meaning in our lives, we must really live into them.  It is what we have to work with so take it by the horns and wrestle and ride.  Damn, that's a big order and I'm not sure I have a saddle.

For me as a Care Partner (notice the capital letters...I deserve a title) of an spouse with Alzheimer's , it means learning to live into the moments of clarity, hold on to them as part of the life we know together.  And it also means fully accepting the feelings of frustration of my partner AND myself when expectations aren't met, communication breaks down.  It means making new priorities in my life, accepting the losses of time, place, energy and finding new ways to find joy...easier said than done.

One of my joys of retirement is the time to pursue long-held interessts with great abandon, mainly art and writing.  But now I find my time is needed in other ways so much so, that I must take a close look at what is most important.  Alzheimer's disease is sneaky.  It eats away slowly at the hours.  First for this Care Partner it was taking over the finances of the household and discovering I probably do a better job than hubby did.  Then is added instructions on how to turn on the TV or dealing with repairmen and so it goes and the clock is ticking.  Priorities, priorities it says.

And so here we are now facing a move.  It is with such mixed feelings letting go of years and years of art supplies and as a mixed media artist that means not only paint, brushes, paper and glue, the bones of collage but all the other stuff like buttons, tickets, maps, game pieces and a hugh collection of rubber stamps.  However, along with the sadness, comes a sense of relief.  I like to think I'm closing this door so that another may open.

But it is the time thing that gets a bit squeamish here.  How much time do I allow myself to do things just for me?  Go to poetry events? How much for hubby?  How much for church, community?  And what of all of that is the highest priority?  And that gets back to Anne Lamott, my first priority for the week.  I am going with a friend, I will get her to sign my book and I will come home elated having met one of my most favorite authors.  Why a favorite?  Because Anne Lamott addresses the realities of life with disconcerting honesty.  She puts out there for all of us to look at those big questions about life that can only be part of the Great Mystery.
So for all you Care Partners out there trying to find meaning in your life.  Read Stiches.  Even if you don't consider yourself a spiritual person, you can dig this.

Surprise!

Living with Alzheimer's is always interesting and full of surprises.  In the process of clearing out and cleaning up, hubby and I came to the conclusion that it was foolish to hang on to a large collections of CDs, most of which we never listened to anymore.   The plan is to let them go and empty the wonderful cabinet they had been occupying for way too many years.  I had not used any of them since I can remember and was content to just see their interesting cases waiting in the cabinet.  So yesterday I assigned my life partner the job of going through the CDs to keep what he wanted in a new basket and put ones to part with in another box...destinations labeled so he couldn't forget.  He did a marvelous job and created a huge stack of CD cases to delete.  

Great!  Then it was my turn to pick out any that I might want to hang on to.  Whoops!  As I checked case after case, they were empty and I tossed them on the floor.  But where did the CDs go that belonged in the cases?  I found a few in the car case but where were the others?  After a diligent search, I found them all stacked in a drawer of another cabinet.  It seems when hubby played a CD, he never put it back in its case.   This must have been going on for years, not that we haven't all done this occasionally but we are talking over a hundred...more evidence that the disease may have been present long before diagnosis.           

Guess what I'll be doing today!                                                        

Lonely but never alone...the story of an Alzheimer's caretaker

I'm sitting at the breakfast table with my first cup of coffee. It's early..around 5:30 am..early for this slug-a-bed.  The house is quiet except for a few furry hungry feline faces wandering around my ankles.  And it is cool enough that I'm wearing a sweater.  I remember my dearest Aunt Katrina wrapped in sweaters as she grew old.  And now it's me vacillating between burning up and feeling chilly.
It's daunting and overwhelming, this task of facing the reality of where I am in life's seasons.  No one tells you early in life to be prepared for losses.  You know at some level that some near and dear to you will fade away, that your parents will transition but the gradual losses can be just as big.  My best friend, spouse, lover, partner of 55 years is no longer the companion I'd grown accustomed to as his memory and reasoning is more and more confused.  There is so much loss with Alzheimer's.
We have both lost some of our independence.  The big one for him is his independent mobility when his car keys were taken away.  My loss is in time...my time is spent fixing his meals, driving him places, finding his missing date book, explaining once again how to use the phone, the remote to the TV.  My independence has shrunk as he wants to go with me on errands, to shop, the postoffice.  At times I feel like I'm drowning in "togetherness".  I'm lonely but never alone.
 And there are household tasks which each of us have had to give up...cleaning chores like mopping, scrubbing a tub, changing a light bulb in the ceiling.  I love the ad on TV as the husband watches his elderly mate climbing a ladder to dust a high shelf.
The thing I miss the most are the long conversations about books, about relationships, government, politics, about all kinds of things.  But a bigger loss is in the works.  We need to sell our house.  It is too big for us to care for anymore and I must plan ahead for what is to come with hubby's illness.  Twenty years of crap to get rid of.  Daunting and overwhelming and very sad.  I will be giving up my studio full of art supplies and the potential of canvases and collages that might have been.  The bedrooms and closets and kitchen are easy but letting go of special inks, brushes, paints, print-making tools, art books, exotic papers, glues, rubber stamps, ribbons, tapes, pencils, pastels and on and on is just so hard.  They all have been such a big part of my life for so long, my best friend and lover.  Of course, I will hang on to a small amount of paint and paper and glue but the rest has to go.
What to do with all those journals I created for the last 40 years...the stories of my life that I was going to use as poetry prompts?What to do with all the art work I've created?  Canvases and drawings in closets and flat files?  Sometimes I think it would be much easier to just walk away with a few clothes in a suitcase.  Fly to San Miguel de Allende, Albuquerque, Asheville and never look back?  Talk about a clean start.  But back to reality, it is all about selling this house ASAP and I'm gonna need some help in finding the joy in this adventure

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