tranquil

...I don't hear that word much these days, and it does have a sort-of medicinal flavor to it, but it nicely describes our days lately. And even the telling of Mom about her brother. We sat in the sunshine on the sofa, my husband on one side of Mom and me on the other. I held her hand and gently told her we had some sad news and then I told her right away, as I sensed her immediate dread, that her brother had been very sick and then died a few days ago. 

She sat so still, for what seemed like such a long time, but was only a long moment or two...then she asked why he had to die. She asked this a few times, and we told her that he had been very ill. And there were more long moments of quiet and Mom staring straight ahead. And sometimes a question or worry that she hadn't talked to him or been in touch for a long time. I filled the quiet emptiness (oh! those moments when I don't know what my mom is thinking and possibly suffering are such hard ones) with reassurances that she had, indeed, kept in touch with him, and talked with him on the phone and that we had even visited last year. Of course, Mom can't remember any of this, so it felt really important to tell her about the phone calls and the trip as many times as it took to sink in...until she could feel that she hadn't neglected him.

At some point, at last, just a tear or two fell slowly down Mom's cheeks...and she was able to look at us and feel our hands holding hers. After a hug or two, I asked her if she would like to see the photos from our trip last August to Colorado Springs. She said yes, right away, and we looked at those on the laptop, as we continued to sit in the sunshine. We didn't look for long, because looking at photos of occasions Mom was a part of, but can't remember, usually sets up an unspoken tension. She sees photos of herself, there are people she loves there in the photo, yet she can't remember the occasion at all and it is very confusing to her. So we looked just enough to reassure...then I suggested a walk.

Mom was still very quiet outside, tho' I could tell it felt good to her to be out-of-doors and not still sitting on the sofa trying to figure out what to say and do. So we just walked arm-in-arm, at the edge of the hayfields...then I was surprised when she asked "How is Ann, I wonder?". Ann is my aunt, her sister-in-law, my uncle's wife...who, unbeknownst to my mom, has also been diagnosed with dementia. I was so touched that Mom remembered her and expressed concern. It is rather rare for her to make those connections these days. I was glad to be able to tell her truthfully that Ann was peaceful about it all and safe and fairly happy in her new apartment in an assisted-living place.

And that was it. Mom napped soon after our walk and hasn't brought up her brother since then, except once to remark that she hadn't seen her brother or her parents for a long time. But this is a fairly common thing for Mom to say, and we have learned to answer vaguely that "we haven't seen them recently, either" and to quickly get her interested in something else. And then a week or so ago my brother came to take my mom to her beach house so that we had some respite here. That was a super restful and lovely week for my husband and I, and we feel very peaceful as we get back into the swing of caregiving. 

It has been almost two years now, since Mom came to live with us full-time. There were many hard months, getting used to living with the changes-both in Mom and in our lives-but we seem to be in a tranquil place now....seem to be accepting that this our life now, and there is much goodness in it. I am finding a rhythm, finally, that takes care of Mom and me and our home and my family and some of my dreams and hopes, too. We are so thankful for it  all. When my brother and I were saying good-bye to each other at the airport, Mom safely and cosily napping at home with my husband near by, he asked me how I get things done...how I mentally handle the constant not-knowing if Mom will wake up at night or during her nap, if she will be confused or clear each day (each hour)...oh, I can't really list all the not-knowing things there are in a day with Mom...and I realized how far we have come in the past two years in learning to accept and cope. My very short answer to him was that I always keep in mind how good we have it, as far as Alzheimer's goes...Mom isn't following me around all day, asking questions...she doesn't get angry or so anxious I can't soothe her...she is mostly happy and cooperative. I am making the most of these days, which may end up, when I look back, as the easy days.

I have a long answer, too, to my brother's question, which shall be another post. Until then, I am wishing for many more moments and hours and days of peace for us all.

a new grief

While my mom sleeps in this morning, as she does most mornings, I am thinking of my one-and-only uncle, Mom's one-and-only sibling, who died a few days ago. We knew it was coming, as he had been diagnosed a month or two ago with liver cancer, tho' we weren't expecting it so soon or so suddenly. And I say "we", tho' that means me and my cousin and his wife and my husband...because we never told Mom about the illness and prognosis.

Mom and I went to visit her brother, my Uncle Jim, last August. Mom used to often speak of him and tell me that she missed him. I hadn't seen him in many years and was old enough to know that visits with aging loved ones shouldn't be put off, so we planned a visit and it came off very well, all things considered.  Mom couldn't remember the visit just a few days after we returned, and tho' she does mention her brother now and then, it is rather rare. I am pretty sure that she thinks of him as a young man or a boy. The last time they spoke on the phone, she said her usual "Jim, this is your blister...".

She hasn't brought him up in a month or two.

Hanging over my own grief and the concern for my cousin and my aunt, has been the cloud of "What do we tell Mom?". It might seem a simple thing...that, of course, you just break it to her gently. But it is actually much more complicated than that. Mom doesn't really seem to remember about anyone's death...my father, old friends, her own parents. When she first asked about her parents a few years ago, we told her that they had died long ago. She was very, very sad about this and also couldn't remember. So when she was told the next time, was very, very sad all over again. I finally came to the conclusion that I didn't have to be truthful with her, and when she asks where they are now, it has worked to give her vague and gentle answers. When her dearest friend's husband died unexpectedly a few weeks ago, we didn't tell her, feeling it was unnecessary to upset her when he might not come to her mind again in the future anyway....tho' she loved him dearly. But her own brother....

My husband thought that she deserved to know, in the sense that it was the respectful thing to do. My first feelings have been to shield her from the pain of knowing....to protect her from more sadness and confusion. And I know that some of my reluctance is because I know how hard it is going to be to be sitting next to her, telling her, wondering if I can come up with the right words and soothing to get her through it.

I spent many hours researching online, gathering other people's experiences and perspectives on such a situation and came to my decision about it after reading the last link below...

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/960108781/m/3794076597

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/960108781/m/114101731

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/214102241/m/6234016408

http://www.caring.com/questions/tell-alzheimers-patient-about-death-in-the-family

http://www.healthcentral.com/alzheimers/c/62/105038/dementia-loved

http://www.ehow.com/about_4611364_alzheimers-deaths-family.html

I feel much more peaceful since settling on telling her once and then moving into the vague and gentle approach if she needs us to. We are leaving it for Wednesday...our most peaceful day in the near future...when the weather should warm up and we can sit outside in the sunshine for the telling... and I can have photos from our August trip ready to share...and I will have built up my courage.

Then we will see how grief works in my mom...now...I haven't analyzed it, but have just felt that our brains have as much to do with it as our heart. So my worry has been that she won't have what it takes anymore to control and make sense of the loss and sadness. But perhaps she also won't realize that she is the last of her little family

We shall see.

P.S. Deep thanks for the thoughtful responses to my last post. The post was, indeed, therapy for me, as I struggle with changing friendships, and your responses were the best part of therapy for me....caring, dear people listening to me and responding in a way that let me know I was truly heard. And giving me even more to thing about.

I hope I can always do the same for you.


P.P.S. While I was in Colorado last August, my uncle poured me my first-ever Amaretto...mmm.
This Wednesday evening I will be serving some Haagen-Daz Amaretto ice cream, also something my uncle introduced me to. And with every bite I will be silently toasting my uncle.

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."