filling up

I was reading at a favorite blog today and noticed the glass jar on the kitchen table in one of her photos. Heather had shown us the full-to-bursting jar of cookies just a day or two before...it was now less than half full. I found myself swamped by sudden tears, thinking of all the years past filled with baking and filling jars and groaning as they emptied so quickly. And in the same instant thinking of my two sons far away, my husband and I who don't need jars of temptation around to add to our middles, and my mom who probably wouldn't think to reach into a jar to take a cookie as she shuffles around the house. 

Even as I would inwardly groan as the food disappeared so quickly in the days when our home was more full and bustling, I knew great satisfaction and happiness in tending to the needs of growing beings...tending a frail and confused being, no matter how much love is there, is a whole different thing...at least for me, at least for me now. Joy is much harder to come by.

But I will keep seeking it, no matter that it is harder to find. And perhaps I will try filling a cookie jar again and wait to see what happens.

"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.