shower day

In the many years that Mom lived on her own when she was well, an afternoon or early evening shower was her joy. If she had been out that day, she couldn't wait to get home and take her warm, warm shower and change into a muumuu. It is very different now, as a fear of showers and baths is a very common part of the Alz./dementia experience. 

I help Mom with her shower once a week. When she spent a few months in assisted-living before coming to us, the aides there said that once-a-week was all they required, so I have held to that, too. No need to put her through what she perceives as an ordeal more often than necessary.

Friday is shower day for her. I find myself thinking earlier in the week, "Oh good, five days until Shower Day."  On Wednesday I will think "Phew, two more days until Shower Day." And on Thursdays it is "Ok, tomorrow is the Day, may it go well."

It is Friday afternoon now. This late morning, when Mom woke up, I gave her a hearty breakfast of two scrambled eggs and a piece of sprouted wheat toast. She ate most of it, with lots of prodding and encouragement. I ran outside while she was eating and fed the hens outside her window so she could see the "little women", as I like to call them, who give us our eggs. Mom's usual breakfast is a bowl of Honey O's with sliced bananas and almonds, but I like her to have lots of protein on Shower Day to give her strength. Like most things I do, I don't know if it actually makes a difference.

I don't tell her it's Shower Day until her breakfast is finished and we've done something pleasant. Today my husband looked through an old photo album with Mom while I hung out some wash in the sunshine and breezes (shoring up my own mental strength for the coming hour or so). When I came inside, Mom wanted to show me a few photos of our sons when they were tiny and herself when she was with them. After exclaiming over the photos, I took her hand and matter-of-fact-ly told her it was time to brush teeth and have her shower. 

The next words out of Mom's mouth, after a few long moments of silence were "I don't feel well." It is so much like handling a child sometimes. I told her I was sorry she didn't feel well, but that I would help her with her shower anyway and that it would take but a few minutes. And that is the truth, she is only five minutes or so in the shower, and I make sure that the rest of the process is as warm and pleasant as possible.

On a scale of 1-5, I would say this Shower Day was a 4. She told me she wasn't well a few more times and also that she "didn't like this at all"...which is a usual comment. To make her feel safer and happier I helped her off with her clothes more than I usually do...I don't want her to forget how to do it herself, which she will if I take it over sooner than necessary, and honestly, I am grateful for even the little bit of exercise she gets pulling and tugging to get dressed and undressed...but I know it is a challenge for her. She surprised me by thanking me for the help today, which showed me what I knew already, that she would welcome the help more often. Little blows...believing I am doing the best thing for her when I know she sometimes thinks I am being unhelpful. But she is so generous with her thanks throughout each day and I am very fortunate in that, I know.

She was more confused in the shower than usual today. For a few months we have been using simple instruction cards that I made to help her through the process. Since she is hard of hearing, it has really helped for me to show her the signs while I stand outside the shower curtain...

"Rinse your hair, I will give you shampoo"

"Scrub the shampoo in all over your scalp"

"Rinse the shampoo out of your hair"

"Wash all over with soap, focusing on private parts"

Sometimes she laughs at the last one, more often she makes a face or rolls her eyes. Today, she needed a lot of help with the shampoo part and she made it clear she didn't want to wash herself. In the past, she hasn't wanted me to wash her, especially the "private parts", but today she told me she would like me to...and I told her I would be happy to do so. It took just a few seconds and I ended with soaping up her back, which she liked. Then it was time to bundle her up in towels, a few short steps to the cosy chair where I rub lotion all over her, and trim her chin hairs and floss her teeth. Then its into a fresh pair of pajamas...one of our Shower Day treats, so she won't have to go through the tedious process of dressing and undressing again that day, nor will I. Then on to the sunny sitting room where I blow-dry her beautiful hair. Then nap-time.

The moments when I can totally pamper her and answer her needs and desires, my heart opens up and I am glad. Then come the moments, like when I was blow-drying her hair today and thinking about how its white/silver color is so beautiful...then thinking about when she was my age and it was salt-and-pepper...then, inevitably, thinking about how wonderful it would be if she could still revel in her long, hot showers and blow-dry her own hair and not be afraid when she had to change clothes. Then the tears start and I blink them back and try to shut my heart enough to stop those sorts of thoughts from entering in too often.

And I think about how I need to keep putting aside the dread and fear that so often crop up in these days...the dread that a shower day will go really badly...the fear that I won't be able to find the right thing to say or do to comfort her and ease her own fears. This whole fear thing deserves a whole post...truly it does.

But Mom is napping again, after she woke up and I sent her back to bed with reassurances that there was nothing else she needed to be doing right now...and I am going to get out in the sunshine for bit, with monitor nearby and store up some fear-banishing sunshine and moments with the earth and the weeds...

P.S. Mom has been sleeping better the last several nights, with the last two nights with no waking at all...how restful...

sinking...

...just a bit...

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

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

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

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

starting again...

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

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

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

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

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

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.