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

dotty and duncan

More than a year ago I first discovered Bob DeMarco's Alzheimer's Reading Room. I've been visiting ever since and have learned so very much through what Bob has shared with us there...especially from his journey as a caregiver for his mom Dotty. 

For the past almost-three weeks, I have been honored and humbled to read what Bob shared about his mom leaving this life. Morning and night, I would check for a new post, hoping to find out how they were doing...thinking of them each time I passed my dressing-table altar...and many other times besides.

When we returned from an out-of-town trip a few weeks ago, we found one of our elderly goats (one of a pair of brothers, the last of dear line of hooved creatures) at what looked like death's door. It wasn't unexpected, but we gave him delicate treats and herbs and tender care and he rallied for awhile, but a few days ago he took a turn for the worse and I knew this was the end of his time with us, sweet Duncan. 

He spent the last few days of his life in his familiar paddock, resting on a thick bed of golden straw, with cloths to keep the flies off and frequent visits from us with water to pour upon his tongue and green leaves to nibble. Wednesday evening when my husband returned from a rehearsal and could be in the house in case Mom woke up, I took myself to the barn with a flashlight and something to lay down on and spent an hour or so with Duncan.

The flashlight was turned off, I was stretched out next to Duncan listening to this breathing and stroking his furry cheek. His brother Mackay was laying in the straw nearby and I listened to Mackay's stomachs gurgle...and Duncan's mostly peaceful breathing...and I watched the canopy of stars beyond the overhanging roof and the fireflies shining out now and then over the paddock and hayfields. I watched planes fly over and thought of the variety of people sitting in all those seats and all they were holding in their minds and hearts...I thought of Bob and Dotty in their  house in Florida and hoped they were having moments of mostly peace, as well. When Duncan called out now and then and feebly moved his legs, I stroked his legs and murmured endearments and comforting words and was grateful that the episodes quickly passed...and I thought some more about Dotty and Bob...and also about my mom and myself and how I hope that we will be able to be together and as peaceful as possible at home when it is her time to take leave...

More stroking and listening and watching and meditating, until I left Duncan with a kiss...peacefully sleeping. A tiny bit of water and a few leaves the next morning before I had to go into town, and another kiss...then a phone call in the afternoon from my husband to let me know that Duncan had gone. When I came home, I found that my husband had added Duncan's name to those of Bob and Dotty that I had spelled out a few weeks ago, near the beginning of the last part of their journey together. And then this morning I found this when I checked Bob's blog.

Sweet Dotty. Sweet Duncan....I don't want anyone to think I am being disrespectful or in any way comparing Dorothy Olive DeMarco's life or passing with our dear goat's...not at all. But they have been woven together in my days this last while...woven together with the love and the stars and the tending and the fireflies and the caring and the peace and the Life within and around it all.

respite

I read this last night in my current novel...

"Respite.

If happiness was now beyond his reach, he could at least know respite, and respite, with its lifelong rhythm, can in the awareness of it be called by the name of peace.

"But there must be no before or after," said Sally.

He looked at her with polite astonishment, and she laughed.

"Please forgive me!" she said. "I was thinking of moments of respite. One can't get the most out of them unless one treats them as the next thing: as though it were the only thing. I mean, if you think about the toothache that has just stopped, it so easily becomes the toothache that is going to begin again, and all your peace is lost."

Except for a few hours on Mothers Day when part of our extended family was gathered together for a few hours, I have had ten days of respite from caregiving. The first few days with Mom in the care of a dear lady whom she loves and trusts in town (who used to manage the respite care that Mom attends now and then) and the last several with Mom in the care of one of my brothers at her beach house. The first few days found my husband and I in Asheville NC steeping ourselves in the vibrant, warm atmosphere and celebrating our 25th wedding anniversary. And the last several days have been spent at home with me straying no further than the edges of the waving hayfields. Heaven.

At the beginning of our respite, I found myself now and then counting....seven more nights without the glowing monitor by my bedside...six more days when I can flit in and out of the house and do and go wherever I want without a thought...five more nights of staying in bed the entire night and early morning, without a single trip down the hall and no long minutes watching the monitor in the wee hours...four more days of working in the garden for as long as I like without the monitor beeping in and out of range constantly or needing to worry whether Mom will be happy for another minute or two as she sits nearby...three more days with little routine and long hours of quiet and no need to speak or encourage or cajole or instruct...and then I read those words last night and stopped thinking about before or after this wonderful, generous period of respite. 

Peace.

Tomorrow I will take up my sweet burden again. And the respite will come around again, as well. And not just the week every three months that my brothers aim to provide, but the every-other-week sleepover that we are trying to make a habit with the same dear lady in town, and the Thursday afternoons at the respite at the church when I do my errands and enjoy a few town hours on my own, and the moments I try to weave into each day...listening to the mockingbird in the sweet night over the gentle hum of the monitor, the ten minutes of weeding before Mom wakes up in the morning, the time with my novel and a cup of something while Mom naps, the moments when we are side by side together and she is content...