tuesday morn 'till tuesday eve

sunday evening into monday evening

Another peaceful day is gifted to us, after a night of some fever and worry. All is hushed...the Satie switched out for Schumann...much as I have found myself switching out things today, like the jar of straws and glasses that will not be sipped from on the bedside table for a long-lost photo of my mom's family when they first arrived in Hawaii, everyone heaped with leis and Mom barefoot...

 

I didn't know before, how similar this feels to preparing the way for new life. We cannot read, we cannot spend much time in contemplation...but washing and folding and putting away fill the hours not spent soothing her brow or rubbing balm into her lips and hands or simply sitting nearby in the consoling light. 

There is little left to clean or put out of sight as I write this, but there are always more candles to make and light, more glasses of wine and water to pour, more tender messages to send and receive, more loving words to whisper in my mother's ear...

 

 

"All shall be well, and all shall be well and all manner of thing shall be well."

 

-Julian of Norwich 

 

xo

weeks, days, hours

*this was written many days ago and newer posts have been made since...you may find them to the left in the sidebar...*

 Just three weeks ago, we were steeping ourselves in the gorgeous Autumn, the days full of their usual beauty and hardship...

 ...encouraging Mom to eat while we sat in the sun in her pretty sitting room...

...finding new thrift store outfits to work with her always declining abilities...

...getting Mom out in the earthy world she loved during the generous portion of warm days we were given,  and all the while feeling all the usual frustration and gratitude and limitation and sweetness. Tho' we had begun to take new sorts of steps...being accepted into Hospice (for the late-stage Alz., not end-of-life), filling out paperwork for handicapped parking as Mom's walking was getting more difficult for her, as was to be expected. But life was going on its usual way.

Just two weeks ago, Mom fell down in her cosy room, as she did her usual puttering around after a nap. There was nothing to trip her, she was simply walking from her closet with her new pair of shoes, when I heard the dreadful thump from the kitchen.

So began a week that is a blur of pain and confusion for Mom, worry and sorrow for the rest of us,  emergency room and hip surgery, days camping out in her hospital room, so many prognoses and questions and finally being able to go home Thursday afternoon, some ten days ago.

 

Just a week ago, Mom was tucked up in bed, eating her own supper, watching her favorite movies...kept somewhat comfortable and comforted with medicines and her own things about her. I was taking moments out to stock up on all of the things we might need for the long weeks of nursing ahead. It was daunting, but we were stepping out on that journey, and gathering our provisions for it...

 ...making a big batch of tapioca pudding, just as my mom would do when I was a child, filling new shelves with ample bedding and all of the strange supplies that came with the home health agency and hospice help, arranging the room for all that would now take place within its walls, and all the while reassuring, comforting, loving this dear woman...

Then just five days ago, Mom stopped eating...and drinking...and her anxiety and distress grew much larger than they had been. There was no more consolation to be found in our preparations, and very little we could find for Mom except in stronger medications...

 And just two days ago, things shifted again and a peace came down...to my mom, to her room, in our home, in our hearts. She is sleeping, off the medications, breathing easily for now, accepting our ministrations with little fear or pain.

 Yesterday and today, the house has been blessedly free of all those good people who are helping us through this....just Douglas and me...lighting candles, making playlists of Mom's favorite music to play in her room when we tend her, communicating with all who have loved her over the years, making candles as we run low, eating the tapioca pudding for breakfast with our toast, creating an Erik Satie station on Pandora to listen to as we do the laundry and wash the dishes, and glance out the window for quick views of the beautiful, leaf-speckled, bare-limbed, blackbird-dotted world outside.

 We are happy to stay inside mostly....feeling the sacredness of this time. So grateful that our long-held wish that Mom be here at home at the end of her life seems to be granted to us...that she is out of suffering, for always, we hope....that we are here to love her and remember how she loved us...that she is still under our wing.

I am typing this as I sit on the sofa in her bedroom and sun sinks and throws its glow through her western windows...she is sleeping peacefully, her hand on the little white dog that I brought with us to the hospital...there are flowers and a pitcher of rosemary nearby and the painting of her own wondrous mother overlooking her bed. All is calm. May it remain so.

I will keep you posted as we move through what we believe to be the last days and hours.

xo

sweet burden

 

Long time no words....

It is hard to write when it is mostly struggle. You can see that we have sweet and beautiful times...thank goodness, we do.

But there has been more burden than sweetness these days. It is partly because Mom is losing ground, physically and mentally. My heart aches for her when I watch her try to move her uncooperative body as she tries to dress herself or take a step after sitting awhile. My spirit falls when I discover the results of her uncooperative brain when she has tried and failed to remember where to go to the bathroom.

There is lots of adjusting going on here. Both the adjusting of expectations and what we now perceive as "normal" and the adjusting of routines and coping arrangements. We now have a bathrooming schedule and are in the midst of trying out new technologies to be able to keep an even better eye on Mom and stop some situations before they begin.

It is all rather sad and tiring....for Mom and for us.

How do I get through? Especially as all my lovely plans for regular respite fell through soon after I last wrote of them? I am writing this from the screened porch with birdsong and faraway thunder nourishing my ears...and white sheets hanging on the line and the green apples peeking through the green leaves on the trees in the kitchen garden nourishing my eyes...and the buzzard flying so high and peaceful amongst the blue and white of the sky nourishing my soul...a glass of an iced herbal infusion nourishes my cells.

That is the sweetness.

The other part of the burden is being 53 years old and instead of an having an empty nest, finding myself with a nest filled with an adult I am completely responsible for who doesn't even know anymore that I am her daughter. Yes, she still knows my name and she is affectionate....but she doesn't understand our connection any longer.

And I am at a time in my life when I long for more freedom, not less.  

You know, I could go on and on...I have so much to explain and that I want people to understand. But the reality is, I've had to get up and check the monitor five times while I've been writing this (as its range doesn't extend to the porch). The last time I found Mom up and wandering her room and had to put her back to bed (the bed she doesn't recognize as a bed)...so I am going to end sooner rather than later.

And instead of writing I will try to setup the new camera that my brother researched and found and that we hope will allow me to be on the porch whenever I can be....and perhaps even the garden. So the next time a long-awaited rainstorm comes by, I can welcome it, reclining on the porch sofa with the monitor withing hand's reach....taking care of both myself and my mom.

And I will continue counting the days until my other brother comes to relieve us for a spell at the end of August.

And I will hope that the glimmer of the possibility of regular respite that was shown me last week will be fanned into a proper glowing sureness in September.

And you may be sure that I will go on knowing how good I have it, in so many ways, as I think of a friend who is dealing with losing parts of her precious body to cancer. I can truthfully say I would rather have the burden I do than that one....and I will continue to nourish myself as I am able...and speak my truth...and remember to breathe....and cry when I need to....and keep learning and loving and hanging on.

xo