sinking...

...just a bit...

We try really hard to keep life hopeful and happy day to day here...pretty and comfortable surroundings, light and sunshine, interesting books and movies to fill the sometimes hard-to-fill hours. But there are days like today when I just feel so tired with trying so hard to balance the darkness that is always present with Alzheimer's. Our darkness isn't as dark as what others have to bear, but it is dark enough to me....one night of Mom not waking up and me watching her (through the monitor) wander her room opening doors and curtains, sit on the bed staring into space, constantly fluttering her hands and fingers...until I determine that she is not going to go back to sleep on her own and go and reassure her and tuck her back into bed. The bed that she often doesn't recognize as her bed or even that it is a bed at all. One night like that might help. The same for our home that I work so hard to make safe and beautiful for her, but that she doesn't recognize as hers. Tho' she does comment on its prettiness sometimes...all the while she wishes "they" would paint the fences and get rid of the piles of mulch and lumber. 

The first time Mom used the term "they" and we realized that she didn't understand anymore that she lived with us and exactly how it all works, it was gut-wrenching...like the time Mom referenced me as "she". We have sort-of become used to the "they", but these past few days it jars again.

When the nights aren't broken with watching and sadness, the weirdness of the waking hours are easier to bear cheerfully. I guess it has been a few weeks now without an unbroken night. And there might be the fact that I am trying to get through these days without the comfort food that I have turned to over the past few years to soothe the little, daily disturbing things...and the evening glass of wine. I have read many Alz. caregiving memoirs and it is rather common to "let yourself go" during the years that you are spending so much thought and energy on someone else. But that sets up another layer of  negativity for me, so I will go on in my way, trying not to succumb too often to the cake or the darkness. 

It is past time for me to wake Mom up. So I will pull up the bootstraps of my mind and get ready for the "morning" routine (it is past noon)...A glass of orange juice to entice her to sit up...lots of stroking and pulling her back up into a sitting position again and again for she is always reluctant to wake when it is actually time to...the whole dressing routine and the placing of her chair at breakfast where she will see the least amount of worrisome things...the grass in the hayfield sometimes looks like people or animals to her,  the tractor and the canoe and the mulch pile make her wonder alot and if she sees Pippin laying down she speculates about whether he is cold or uncomfortable, but if she can't see him she worries about where he is....It might be easier not to have her near the window, but I believe the sunlight is beneficial to her, and the activity of the birds that come to the feeder....so we continue the dance of dark and light, and are grateful that most days the light is the one leading.

starting again...

Isn't it lovely how my mom wrote the inscription for my birthday card along the feather? I treasure the bits of creativity and thoughtfulness that come our way from Mom, tho' in a much smaller stream than they used to.

Inside the card it says "Happy Days to you, my lovely doter" "With love, Mom". Of course, the first thing I noticed was "doter"...her spelling is beginning to slip, as are her spoken words more often now. I know my husband made the card and probably prompted most of the wording, but it is a beautiful wish, lovingly written and so precious to me.

I have been rearranging in my life lately...furniture in our rooms...patterns and rhythms for my days. I am in the third year now taking care of my mom (not counting the years leading up to it with all their confusion and wondering and figuring out and taking care of Mom for days or weeks or months at a time), and I am getting better at seeing what I need to do...for both of us...for all of us.

We are only going into town once a week now, an enjoyable afternoon at Respite care for Mom and some time alone at the library or coffee shop and errands for me. Two days in town was one too many for me. Too many hours to fill, to find friendly places to hang out, too much driving...when I just want to be home-writing, reading, tending home and garden and family, watching the clouds and listening the birds and breezes, continuing to figure things out...all the things it takes for me to stay hopeful and healthy. Mom's love of sleep (a lifelong passion that I have inherited!) makes it possible to find enough hours in the day for a goodly amount of nourishing things. And we are more often able, then, to have Mom in the care of a wonderful friend in town for an overnight or two a month...time to go out with my menfolk without worry, time to be alone at home with some uninterrupted hours and without the hum of the monitor. 

And I've been rebalancing my time online. Since I am writing so much at my new creative venture, I will be writing less at The Bower, and strangely, more here. This feels important enough to keep trying to find the time for. Because tho' life with my mom is fairly steady and serene...it is still the odd, challenging life of living with someone with Alzheimers...and if I can be of any help to anyone else going through this, I want to try to through this little blog...and lately I realize that my dear mother, lovely Lo Padgett, is going through this as she has always gone through life, with alot of grace and humor mixed in with all the sadness and anxiety that come with this disease. It seems right to chronicle it, like her life has been chronicled all along the way (starting with that photo of her in her mother's arms).