understanding

Even as I posted this post, I knew the fleeting feelings of peace were leaving me....perhaps that's why I wanted to preserve them before they flew away. 

This is such a lonely journey, one that I try to be brave about and one I try everyday to prepare for...shoring myself up with nourishing food, books and blogs by people who know this journey, deep breaths of fresh air, appreciating the beauty and goodness around me, cherishing the love that comes my way.

I've always been an optimistic person, usually able to make the best of whatever situation is mine at the moment, while still being honest about it. But lately I begin to think it might be more helpful to people understanding me and understanding the life of a dementia caregiver if I appeared less successful at coping. Perhaps if I stopped wearing pretty clothes and washing my hair. Perhaps I could start giving in more to the comfort food and the lure of a glass of wine. Perhaps if I stopped being honest but strong when I have the rare pleasure of meeting friends and acquaintances and instead could be honest and emotional....but no, you can really only feel safe enough to be that way with true friends or other caregivers. Only they can understand. Or at least want to understand.

What I am trying to say is that it would seem, from what I have encountered over the past few years, that, in general, people have to be hit over the head with the reality of Alzheimers. Hints, stories, reality presented with lovely pictures or hopefulness just don't seem to get across what I am sometimes trying to get across. Although if I stop to really think about it, it does get it across to some...to those who live caregiving, to those who have extraordinary empathy, to those whose other-sorts-of-sadnesses-and-experiences have given them the ability to read between the lines or read what I sometimes don't express as well as I would like...to those who leave comments here. But it has been so surprising and shocking to me how few of my dearest friends and family don't get it. That is what has me writing today. Writing for myself and for all those others who find themselves in the same boat. And a lonely, rocky, and rather leaky boat it is.

If you want to try to understand a bit better, would you go and read this and then come back here?

A blog is a funny thing. Much of the time, I might be preaching to the choir....the friends and family that I most wish were reading it, don't, or atleast I don't know that they are. And it's not for lack of trying to get them to do so. Perhaps I put too positive a spin on my caregiving...tho' I find if I put all of the emotion I feel out there, I too often receive advice or accolades, when I what am looking for is understanding and support-both things that are so much harder to give online (and yet online is where I receive it most), but are what I most lack in my day-to-day life. Without your comments and other online support I would be in a very bad place!

So if you are reading this and only know me through my blog (and might be feeling rather helpless at this moment), please know that this post is a result of months and years of friendships limping and dying and me just needing to put my grief somewhere else beyond my own body and spirit and my husband's shoulder.  I will go on trying to take good care of myself, to find more respite, to make new friends....but I hope all who read this will think about who you might know in "real life" who might need more of your loving attention, and that those who are caregivers might think about how you might be more honest in your reaching out.

For me, that will mean posting more here....just needing a place beyond my family here at home to describe what it feels like....when your realize tho' your mother still calls you "daughter" she doesn't know she is your mother anymore....to hear her say "don't leave me" when you are just laying her clothes out in the morning and then going to the kitchen to get breakfast or kissing her at naptime and bedtime....to have to dredge up over and over again the best responses to her odd sightings and sayings, not the ordinary responses that come easily but the soothing, accepting responses that I am now learning to say. All this comes at a cost, one I am willing to pay and one I know I will pay less dearly for as gather skills and support around me. But I feel as tho' I am only at the beginning of this journey and am at the bend in the road where I have accepted that some people that I thought would accompany me just aren't there. So be it. I will find others, and perhaps some of my old friends and family will join up with me further along.

What I am hoping for is that we can all just bring some more understanding into this world. I have always loved the St. Francis prayer that includes the line "let us seek not to be understood, but to understand"....tho' I've never been terribly good at it. I want to be better at understanding others and their lives, but I also want people to understand me. But then, I am not a saint, just a human. So I shall try to be more open here, in the name of illumination. And even tho' I didn't include a beautiful photo this time, I will in the future, as usual, because life is all about the beautiful and the awful....the darkness and the light...the easy and the difficult. Alzheimer's is the most difficult thing I have ever faced, and all that comes with it seems to scare off a good many people, but I am going to keep trying to talk about it...for me, for my mother, for everyone. For understanding.

"Our life is a faint tracing on the surface of mystery, like the idle, curved tunnels of leaf miners on the surface of a leaf. We must somehow take a wider view, look at the whole landscape, really see it, and describe what's going on here. Then we can at least wail the right question into the swaddling band of darkness, or, if it comes to that, choir the proper praise."

- Annie Dillard

gleanings

 

Probably my favorite thing about reading is finding my own thoughts and feelings beautifully evoked by others in the words on a page. It is comforting to know that someone out there understands, and that I have understanding for them. When I am reading a caregiving book or a memoir of someone dealing with Alzheimers, there are usually so many passages I mark that it can get rather tiresome (after the initial "oh!" upon finding my own feelings validated)...but I keep tearing little strips of post-it notes to mark them and hope to be better about taking the time to type them out here.

It has helped me today to reread these from The House of Beartown Road-A Memoir of Learning and Forgetting by Elizabeth Cohen...and I hope it helps someone else out there, too.

"When my father's mind began to loosen its grasp on the world, my mother's love quickened. It grew wings and teeth and extra hands."

"Daddy smiles. He may not know Ava's gender, but he understands jokes. He makes them, too. I think that a sense of humor must be hidden in a box very deep in the brain, where diseases have to search for it. Maybe this is an evolutionary tactic, to keep people going."

"These are silent, private pleasures, not visible to the outside world. They are our secret rituals. Alison doesn't know or can't imagine how hard could translate to challenging, how a rotten deal can be invigorating somehow. How, set against the backdrop of all that has gone wrong, everything right seems heightened. She is awed by the hardship of our lives, the long drive from my job at the paper out to Beartown Road, bringing in the wood, starting the fire. What she doesn't see is how I am blinded by the glare of all the silver linings. Our sweet, lick-crazy dog. This child with great, mooning eyes. The view from the top of the road of a dozen hills, receding in shades of purple."

"At work I have rearranged my cubicle to reflect the changes in my life. I take down a picture of Shane and put up one of Daddy and Ava. I have started to write about my own life all of the time: about snow, about memory, about loss. About Alzheimer's. Writing gives me a sense of control. It has its own special alchemy. I can what is terrible turn beautiful, like our purple-gray shadows on the snow."

"And I wake up before dawn, before Ava and Daddy, and go outside and run through the cemetery. I leave Samo inside, whining at the door. I want to be alone. I want to hear my feet thud and splash with no doggy echo. I want to be a person without baggage, if only for a few minutes. If only in a cemetery in the rain. I run and run. Away from the man who has left me, and the baby he left behind. I run from the remains of the person who was my father. I run from his questions. I pound against the hard ground, I jump over briar patches, ripping socks. I climb a steep hill to a field full of tiny yellow flowers and tall purple stalks that poke through snowy patches. Loosestrife is blooming, it shouts with color."

   "The lilacs are the purple ribbons tied at the gates of spring. The hardest winter of my life is over. In the distance is the untuned banjo twang of a few frogs in the Wrights' pond. And beyond them, the night crammed with stars.

   Stars and lilacs connect us to people. We are are not as alone as we feel. The same stars blink over the Wrights' house, over the people who lost their homes in the floods in Mozambique. Somewhere across the country those stars are shining over the heads of my mother and Shane. Her lilac bushes must be blooming, too. We couldn't be farther from one another, but despite all that has happened, we are still connected, by stars, by night, by spring."

peaceful

Peaceful, mostly, since I last wrote. 

Very grateful for a feeling of equilibrium that has mantled me these past several weeks. Little highs and lows, of course, and longing for some time alone or a little holiday for my husband and I (one day soon)...but mostly appreciating that as far as Alz. caregiving goes, we have it pretty good. I suppose it takes this peace in the heart to realize such things with the head.

P.S. Steven Spielberg (my husband) apologizes for the noises and abrupt ending, he (who is not used to filming) just grabbed the camera one day when he saw Mom and I taking a little walk.

this mother's day

Today, my mother's day gift is to do what I like. My husband offered a meal out and making a celebration out of the day with his mother and mine...but this is what I wanted. So we all slept in (Mom included!), then had homemade pancakes (from the freezer, warmed up) while watching the Sunday news shows. Mom joined us when she awoke and while she ate her breakfast, I went outside and picked some flowers for her. I gave these to her with a kiss and the wish of "a Happy Mothers Day". She was pleased, but immediately asked where her mother was. This is a common subject of her conversation lately and there seems to be no good answer...the truth makes her very sad (and she never remembers it), vague comments ("I haven't seen her lately either.") don't satisfy...so we usually go with distraction...as we did today by bringing her attention back to the flowers and breakfast. 

I knew that the day wouldn't mean much to Mom....she doesn't really remember being a mother. And tho' she knows she is my mother (I think), she isn't motherly anymore and seems to find no connection to the stories I tell her of her life as a mother to me and my brothers.  And I knew that my eldest son was working today and couldn't come home...so, since it won't be a sweet and celebratory day, it can atleast be a restful day with no demands. My loving husband is the main caregiver today, and now that Mom is napping, he and my youngest son are beginning to tackle a big garden project (mulching the paths) that will make me very happy when it is done, and I am spending a lot of time in my studio and online, researching a new project to keep me inspired and connected.

So I am finding the goodness to be had in today. But there is definitely a melancholy in the air. Tho' my mothering is the heart of my life, today, we can't seem to give it the attention we usually do on Mother's Day. This is an aspect of living with dementia that would be good to explore, when I am feeling more expressive...how the energy seems to naturally go towards the person most in need (Mom), minute to minute, hour to hour, day to day...so it takes alot of energy to go beyond that to what you would usually give your attention to. And it even takes alot of energy, I find, to ignore those needs (when it is safe) and distract myself from it all. But we are learning to balance Mom's needs and our own. As I typed this last paragraph, I have been watching Mom on the monitor. She woke up early from her nap, just before the menfolk went outside, but my husband encouraged her to go back to sleep and she seemed glad to. But as often happens, something drives her to get up , tho' she loves to sleep. I just peeked in the house and watched her walk through it and see out the kitchen window that her son-in-law and grandson are working in the garden. Now she is sitting at the kitchen table, staring into space (her default activity), and my heart is touched and I know I will be typing one last sentence or two and going to rescue her from her emptiness. Perhaps it is not too cold for her to come sit with me on the porch while we watch the mulch going in, perhaps the wifi will reach out there and I can continue my research...probably not, tho'. Perhaps it will seem fine to spend some time just sitting side-by-side for a little while. I hope so.

As it turned out, after we watched the beautiful work being accomplished in the garden for a few
short minutes, Mom closed her eyes and I just left her resting on the chaise. It may not last long, but I am going to enjoy another little while in my studio. All day, and as I have been writing this, I have been thinking of all of you who are mothering mothers...and how hard it can make a day like today...and all of the days that aren't Mothers Day (or Mothering Sunday in the UK) for that matter, and I am sending you love.