"I'm not a kid"

This is what Mom said to me ten minutes ago or so. I was uploading photos to my computer in the kitchen, keeping an eye on Mom with the monitor as she changed into pajamas at bedtime. She almost always forgets to take off her underwear before putting on the pajama bottoms, so if I see she is forgetting, I dash to her bedroom and gently remind her (with just a few words and some motions-it is sometimes hard for her to understand words) to take off the underwear. Those were her words in response. It was very hard to receive those words and I immediately told her I didn't mean to treat her like a kid, that she just forgot things sometimes and I was reminding her. Then she told me, falteringly, that she thought I was telling her she couldn't put on the pajamas. So we got clear on that, she continued with her dressing and undressing and I went quickly back to the kitchen, fighting back tears. 

This is so hard.

Mom needs so much help these days, tho' I am still allowing/encouraging/facilitating her doing as much of it as possible for herself. Without my cuing and showing, she does nothing and sits or wanders in a confused fog. So I must do it, but I know that it must grate on her sometimes, even tho' it is probably below her awareness most of the time. Helping her more means she might forget how to do things even sooner, and I look for anything she can do to use her muscles and exert herself, even in the pulling of  shirt over her head...she wants to move so little most days. And then I think, to do more for her is treating her even more like a child...but that is being logical, and there is nothing logical about this.

In the kitchen again, I am looking at the photos I've taken today...beautiful light through the pinecone wreath on the front door, the first really frosty morning, clove-studded clementines. I glance at the monitor again and see that Mom is in the bathroom looking in the cupboard for something, then I see that she is reaching for the toothpaste tube (tho' she brushed her teeth just a short while ago). I dash back to her room and find her with toothpaste on her mouth like white lipstick. I quickly wipe it off with a wet washcloth and look for her lipstick in its usual place....not there. I begin to look for it and encourage her to take off her shirt and get in her pajama top, which she does without comment. I look in the usual hiding places but don't find it...so I put away the clothes she has taken off (in the hopes that keeping her room tidy will make her less likely to putter around it in the night) and the lipstick drops out of the pocket of her sweater. By this time, Mom is in her pjs and I happily show her the lipstick and she goes back into the bathroom and puts some on. Then she almost runs to bed (unusual) and I tuck her in...she asks me a question I can't understand, but I answer in a vague fashion that seems to suffice. She asks if I will come and sleep with her and I jokingly tell her that Doug would miss me and offer her little yarn cat, which surprises and pleases her. 

As I type this, I see in the dim monitor that her light is out she is fast asleep...for now. She won't remember tonight, and I have to figure out how to remember it and meet it again...and again..and again in the days and years to come. For now, I will breathe deeply, go back to looking at today's photos, turn up my music *loud* and keep seeking beauty and happiness in the little moments. I'm sure they will outweigh these others if I work hard at at.

checking in...

Such a long time since I last wrote...but all has been pretty calm and steady. Not to say that things are easy, as Mom is obviously more confused these days...not recognizing everyday objects for what they are, needing much more cuing and help with little things...nothing that would be considered abnormal for her condition...but sad and-somehow-always surprising.

 Lots of small adjustments are needed in so many ways...our routines, the arrangement of things, and especially the adjusting of my perspectives and attitudes. Just tonight, as I was tucking Mom in bed (I don't always, but tonight she seemed to need the cherishing), she asked about "those people". "What people do you mean," I asked. "The people who live here," she responded. A tiny arrow to my heart...for she hasn't used the terms "them" and "they" for her beloved family in a long time. When that happens, it always immediately shifts the scene, from one where I imagine her knowing her daughter is tucking her in to bed, and fixing her a tasty supper and finding an old movie she would like to see....but no...it seems something different to Mom sometimes.

But atleast I can handle all of this better this year than the year before...hopefully not by bearing and burying the feelings that come up, but by quickly recognizing and accepting them, doing what I can to help Mom when there is something to help and then turning my focus back to all my pursuits (beyond caring for Mom). These have kept me busy and writing elsewhere and probably will continue to do so for awhile...but I will always come back here when I need to.

And even if I am not writing here, I am still thinking of those who read here and who are caring for their dear ones, whatever the circumstances...and sending love and strength.

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."

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.

consoling

Mom and I are watching the final of the Monte Carlo tennis tournament this Sunday afternoon...well, I am sort-of watching while I read caregiving blogs and write my own. It was a hard night last night. Mom was up numerous times, getting dressed, looking for dishes for lunch, finding the whole idea (when I attempted to explain it-I still try to reason with Mom too much even tho' I know it is pointless) of sleeping when it is dark outside rather amusing and implausible. Ah me...

The worse part was when I just couldn't reassure her and she stopped using words and "chattered"her teeth at me. Mom has been doing this more often and it is undermining the atmosphere of normalcy that we strive for. But I am aware that part of the heaviness that accompanies such changes is my fear that life with Mom will become less peaceful, less bright, less polite. And I am aware that my wanting of everyday life to stay close to what we are accustomed to is probably folly. And I am aware that as Mom can't help any of this, it is up to me to keep learning how to handle it all. Last night and today, that has meant a combination of anguished moments looking at the moon before bed, felt prayers for Mom and me and every other struggling person on this planet, escape into books and movies, dark chocolate, tears just enough below the surface that Mom won't see them, filling my eyes with the brightness of the dogwood blossoms through the living room window.

I am not getting outside enough these lovely Spring days. The temperatures in the seventies seem to always be accompanied by a delightful-to-me but unwelcome-to-Mom cool breeze. Getting her outside and set-up comfortably doesn't usually seem worth the effort for the short time she will be happy there. But I need to make the effort anyway, for my own well-being. I have felt too stuck lately, choosing to hang out in front of the tv with Mom because it is easier than anything else. What I need are hours pulling weeds and planting  seedlings and just laying upon the flowery earth.

We are in a phase, I suppose, a phase that will pass and then circle around again. Just now, we are very aware of all that this commitment calls for from us. My husband I cling to each other sometimes in the kitchen when something  unnerving has happened with Mom. We wonder how we will go on without the cheerful, funny presence of our youngest son who will be graduating in a few months. We wonder about so many things. And we feel so many things. And we keep going on. Finding other perspectives always helps, Mom's naptime is coming, and I just returned from a few fresh and sunny moments outside letting the goats back into their paddock and listening to the hens gentle murmurs. 

I will keep trying to reassure Mom whenever I am able, and myself, as well. It will be alright, not all
of the time, but enough.

*Just finishing up here after a spell of weeding amongst the rosemary and lavender, and a quick lunch of homemade guacamole and tortilla chips (and getting Mom back to sleep during her nap)...I know I have to shift...that the childish faces and sounds she is making show me how lost and helpless she feels...that I will have to enter more whole-heartedly than I have been able to into responding to her as a mother would to her child. I have been resisting the stuffed animals and the soothing and helping her more. Why? I think I have worried that these things would hurry her along the path she is on, that they will deplete me when I feel like I have been "storing" up energy and strength for even harder days ahead...and because it just feels odd and hard to me. Just this afternoon I caught Mom's eye during the tennis match...she was animated for a moment and for an even briefer moment I saw the old Mom, beautiful Lo Padgett, my loving mother and rather amazing woman. Then she was gone and I saw the frail, confused mom who needs me so much. I will step up my game, I will try to be more what Mom needs me to be right now and make sure not to lose myself in the meanwhile.

getting on with it

It is interesting how long it can take to accept, get used to and just get on with things. For me, anyway, it can take a long, long time. Lately, tho', it has been easier just to get on with it-whatever "it" may be. And this in spite of the constant distraction and problem-solving of the build for my mom's new rooms (nearly there...will share soon!). Bath day is a good example...I don't know why I tended to dread it until very recently. In the early days with Mom, it was nerve-wracking working around the broken wrist, her wobbliness in the shower, the challenge of helping her to stand up after a bath. Now, we are old pros at it...showers only, accomplished as quickly as possible before she tires, all the shampooing and washing rituals firmly in place.

I have learned to respect Mom's shyness about the whole process, and the fact that she can't remember that we have done this week in, week out for more than a year. So I repeat the same instructions and assurances as we go through each step...most steps of which she can still do herself, which is something I don't ever take for granted. The one part of "bath day" that I do completely is the flossing of her teeth. But we have that down to a quick and not-bad-at-all process with flossing sticks and yummy natural mouthwash.

And throughout the process are moments when Mom breaks into little songs that she make up about some phrase I have spoken-"step over carefully" or "sit down on the toilet". It is sweet. She always expresses her appreciation of how good the lotion feels when I massage it into legs and arms and back. 

Tho' it is a strain for her to hear me while her hearing aids are out during the whole bath-time, I jolly her along with jokes and reminiscence...reminding her, for instance, when I encouraged her to try to throw the crumpled tissue in the trash-basket (it hit the rim!), that she was called "Dead-eye" in high school for her basketball talents. 

A few weeks ago as I was sitting on the rug at her feet, rubbing lotion onto her legs, Mom said "I used to do this for my mother." I stopped in surprise...Mom hasn't remembered anything about caring for her mother (which she did for the last ten or so years of my grandmother's life) for many years. I asked her what she did for her mother. She replied "helped her to bathe". I found this very moving. And it is these little "rewards" of memory, insight, humor and connection that help me to keep on with a little more ease and energy than I might otherwise have.

 

*These photos were taken a few weeks ago when I took my mom on a walk to our old orchard to see the asian pear tree in bloom. She didn't enjoy it as I had hoped she would...the air was too cold, the earth too rough for her, but she perked up when she saw this "fellow" in the tree. We laughed at his forlorn face, and for once, I wasn't spooked by what she "sees" in the trees and fields. For once, I could see it, too.*

steady days

...are what we have been enjoying for the past six weeks

or so. Not without ups and downs, of course, and small sadnesses when I notice that Mom is losing a little ground. Some words have been harder for her to find, her habits that have been like clockwork...making the bed, washing her face morning and night, changing clothes....aren't so habitual these days. So there has been a little more oversight and reminding than usual, and therefore a little bit more of Mom's comments to me in the vein of "Ok, Mom" after I make a suggestion. I am taking it with good humor most of the time, but I have many ideas up my sleeve for taking my suggestions and reminders out of the picture now and then.

As a mother, I have been fond of creating little signs and lists and such to guide my sons in their tasks over the years. I made one just this morning to help my 18-year old move through his home studies with just a little more efficiency and focus. The thing is....I just don't know if they will work for Mom.

But if she starts waking up more in the night, or my "reminding" ("cueing" I remember the assisted living place called it) starts to bother her (or me), we will give my ideas a try. For now, we will just go on trying to keep the days steady. That phrase comes from a mothering book I found today at the library that I will be reading to see if there is anything in it that will help smooth our days (whether we have a child in the house or not). I've learned that the steadiness or wobbliness of the day mostly depends upon me. I lost my calm and acceptance for a few days early in the week, and those days really reflected it....mostly inside myself....but that is profound enough to greatly alter my patience and creativity with Mom...and to cause many a tear to fall (mine-in private).  Equilibrium is back again, and I am grateful for it, tho' I don't know why it left or why it returned. Sometimes I am aware that I lose it because I drop my defenses against all that is hard and sad and perplexing about all of this. And sometimes I wonder if it is healthy to cope so much through avoidance....but it is working for now, and I have plenty of time to add more facets to my coping in the future. For now, we are in a good groove...

...never more so than we are zipping along in Mom's convertible beetle, along the straight country roads, listening to the old and new songs I find on the radio, tapping our hands. The best times are when Mom will sing a line or two, it usually happens with songs from the seventies...the Bee Gees, Billy Joel...and I realize that I am the age Mom would have been when those songs where topping the charts. Then I put that thought away and get back in the groove.

on the mend

The day started with a shower for Mom

(I put a kitchen chair in the shower for her to sit on as I wasn't at all sure that she was steady enough to stand-the new shower in the addition will be wonderful with it's teak bench), after a night of much more sleeping hours than non-sleeping hours. And the day is ending with Mom sitting up in her usual chair in the living room, sipping soup and watching the Australian Open. She is very clear and making jokes and enjoying herself again. I am so glad to see her bright-eyed face back in place. I am so glad we are cosily at home and not elsewhere....when the doctor told me on the phone yesterday that she thought Mom had a virus and that I should take her to the emergency room if she got any worse....what a dreadful feeling those words inspired. But we were lucky enough for it to go the other way.

Mom spent much of today sleeping, and I knew she had turned the corner when I found that she had slipped around the bed gate and gone into the bathroom all by herself. I had forgotten to take the monitor with me into the kitchen when I washed the dishes and in those few minutes she woke up and made a break for it. We bought the bed gate last year to keep her safely in bed when she was so disoriented and unsteady after the fall. When she is unwell, just seeing the gate usually stops her from trying to get out of bed by herself....if she is getting a little better, the sound of gate being used to pull herself up or the rattle of it as she tries to figure out how to open it gives me time to dash to her side....and when she is all well, it is an oddity to her that she simply goes around. I will probably use the gate overnight tonight and then put it away again, until next time.

Tools have become so important as we try to keep this caregiving life in healthy balance. I was able to spend much of the day resting on the sofa watching tennis with the audio-video monitor always in view so that I could be at my mom's side just as soon as I saw or heard her awaken. It was my constant companion yesterday and spends every night next to my bedside. The video component makes it possible for me to watch in the night when I hear that Mom has woken up and see if it is just a little trip to the bathroom, or a walk to the window to part the curtains to see if it is still night-time (not that that has significance anymore) and then back to bed, or if she thinks it is time to get up and begins to make her bed and get dressed. It saves me alot of trips up and down the stairs, and gives my mom a little measure of independence that I don't think she would have if I was constantly popping in her room to redirect her. When we bought the monitor last year after her fall and I watched the green light that stays on whenever it is on and listened to the constant hum of the speaker as I tried to fall asleep, I was so depressed, thinking how the sacred quiet and darkness of our bedroom had been invaded and that my life would never be the same. Well, my life will never be the same, but I have come round to being usually thankful for the monitor and all the other tools and strategies that help my mom and I make this life-that-will-never-be-the-same the best it can be.

PS Thank you for your kind comments and emails. They are so appreciated.

this morning

...or this moment of this morning (for my moods can change so

quickly), I am aware of the sunlight through the living room window

as I type and I am grateful that the washer and dryer are working

and that I have homemade granola to look forward to when

I get around to breakfast.

Life is funny.

Yesterday was a town day, starting with a simple follow-up

 visit with my mom's wonderful doctor to tweak her supplements

after some bloodwork....Mom to respite, me to Home Depot to try to

finish up with all the choosing and ordering of materials for mom's

little wing that is nearing completion...then two precious hours in

the coffee shop, deeply enjoying a latte and the creating of a blog

post at The Bower. In that post I wrote of how out-of-sorts January

has been, but how it was starting to flow again. And truly, I felt happier

than I have in a long time yesterday, in spite of Mom's little

decline, in spite of other stresses and worries. Mom seemed really

worn out on the drive home, but I put it down to the early

doctor's visit and no nap.

I let her take a nap when we got home (even tho' it was 7 in the

evening-I usually try to keep to her daily rhythm of one long nap in

the afternoon, thinking that more naps might throw off her nightime

sleep even more than it already is, and she usually just doesn't take a

nap on town days), but I woke her up for a little supper and tennis

on the telly. She didn't eat much, but again, I put that down to her

disorientation after the late nap....she was quite mixed up. Now I know

that she was mixed up because she was getting sick. The night hours

were a blur of trips to the bathroom, soiled sheets and clothes, then

lots of waking up, incoherent. Mom is hard of hearing, so when

her hearing aids are out, she can only hear if you speak very close to

her ears. All through the night, and still this morning, she hardly seems

to be able to hear me at all....tho' it is probably more that she can't

comprehend me in her heightened confusion. It is very hard to see

her weak and her face so different....so far away. It is very

hard to be responsible for another person's

health and well-being 24/7. And yet...

At this moment, I am clinging to peace. I have a call into

the doctor (the doctor who yesterday was celebrating the fact that

Mom almost never gets ill). I have the monitor right next to me and

ply Mom with water everytime she stirs. I am hoping it was something

she ate yesterday, and that that soon she will be feeling well again. I

am trying to remain positive about the steps I took last night to avoid a

UTI after all the messiness. I am trying not to succumb to the worry

and dread that so easily come with caring for my dear mom with her

frail mind in her aging body. And as the sunlight has disappeared as I

write, I am also hoping it returns, because everything is easier with its light.

But even a cloudy day is better than those dark hours after midnight...and

I reminded myself of that last night when sleep wouldn't come in

the snatches of rest between tending Mom.

Sometimes during the long hours last night, I would think of the

dear people that I know are tending their loved ones, or overseeing

their care from near or far, or who might just be sleepless and worrying

too. And I am thinking of you this morning, and wishing for all of

us a little more light.

PS Forgive the odd formatting....I can't take anymore time to fix

it today.

a new year

As I start again here....after my Advent Sale,
after all of the holidays...I find myself hesitant
(as always) to write here. The thing is, what you must
know about the life of a caregiver of someone with
dementia (or the life of this particular one, atleast) is
that it is a pretty constant battle against
low spirits, negativity and grief.

And when you are in a good place, you don't
necessarily want to get outside of it and write
about, you just want to enjoy and appreciate
it. We had been on a fairly steady plane for
a bit with Mom. But I can't avoid the fact that
she is losing some ground. Expected, of course,
but still a sad surprise when it shows itself
in the forgetting of the simplest things
(where her bedroom is, what the names of
things are, remembering that breakfast it
eaten in the morning...) and so many other
ways.

Hardest of all are the moments like one that
happened yesterday (and that happen more
and more often these days) when I was on the
sofa in the living room watching "Billy Elliot".
We can't watch or listen to anything around
Mom that has anything distressing in it. It
can upset her in the moment and we also
learned that these things can stay with
someone like Mom and cause anxiety long
after the event is forgotten. So we squeeze
in our news and movies like Billy Elliot
to those hours when Mom is asleep. It can
set up some tension, having to keep a quick
finger on the remote in anticipation of Mom's
numerous awakenings. So when Mom woke
up early and dramatically from her nap
and emerged from her room dressed in her
long, fur-lined coat and hat and gloves
with confused questions about where
we were going, I felt rudely drawn back
into the oddness of living with dementia,
and found myself doing everything I could
to brush away these weird cobwebs and
bring Mom and my day back to normal
as quickly as possible. Mom's imaginings are
still not normal to me. I suppose I always feel
rudely drawn back into it....even after a two years
of the daily contact with it, each tiny episode
comes with a shock and a reluctance and
certainly not with the sense of humor that
might help me through it all
more peacefully.


Perhaps yesterday was worse than
usual because I had actually spent the night
before away at an old friend's house, after
an annual party with more dear friends. It
was all so normal and festive and free. We all
watched the unexpected snow falling down with
joy and wonder (not the grumpiness my mom
greets the falling snow with), and talked and
laughed with abandon (without the editing
and care we have to show at home) and I
could move joyfully and embrace my
friends without the constant observation
and wondering critique that goes along
with anything demonstrative around
Mom.






I suppose the truth is that I am beginning
the New Year realizing how much we have
lost, how much energy (mental and physical
and emotional) we have to use to make it
all as good as it can be, how things are probably
going to be even harder this year than they have
been already. And before this all starts to sound too
selfish and dreary, I must express two things....
that just beyond and right beneath my own first
self-centered reactions to all the work and weirdness
(and amplifying them, no doubt) is knowing that my
mom is aware of it all (on a certain level). She
can't express it clearly, but it is very clear
to her as it is to us that she "is not herself"
(something she says now and then when
she is struggling to put her finger on it).
Agonizing, when I let myself pay attention
to it, which I can't do very often. And the
second thing is that as long as my dear
mom is walking this hard, hard road, I will
gladly walk it with her. The gladly might sound
strange as it might imply without complaint
...but I think the gladness is in the doing it
out of our love for her. A good day is when
the gladness goes beyond the reason for
the doing and into the way of the doing.





The challenge of the New Year
will be to dance this dance with my mom
as gracefully, healthily and happily as
we are able.




Wish us luck! (Or should I say
success....grace....blessing...peace...)
We wish the same for you.


And now I am off to (hopefully) watch
the end of Billy Elliot.