authority

I finally have one. I have a Parking Permit for the Walking Disabled, aka a handicapped parking hang-tag for my car.  Now when Mom and I go for a ride, I can park closer.

To get this hang-tag, the department of motor vehicles needed the signed application from me, a signed form from her doctor, and a copy of my durable power of attorney.

So... all this paperwork for a tiny blue parking permit got me thinking.

When I sold Mom's house, no one asked to see my durable power of attorney.  No one ever asked if I was authorized to sell this house.   Yes, they asked to see my identification, I am who I am. And, yes, I am my Mother's daughter. And, yes, I have a key to this house. BUT am I the person who my Mother has authorized to "acquire, dispose of and sell real property?"
The people who did the closing wanted to see my father's death certificate, to make sure he no longer had any claim to this property. They are the same people who handed me that big check, and never asked me if I had authority to take it.  (tisk, tisk, tisk)

I have heard of many families, who have parents with dementia, who are fighting about authority, power, control, and money. Fortunately we're not one of them.  My Mother gave me a job to do, and my brother trusts me to do it.

the yelling stage

We are all amazed by the toddler who wakes up hungry in the middle of the night, climbs out of his crib, drags the kitchen chair over to the freezer, and is found the next morning sleeping contentedly on the kitchen floor next to an empty tub of ice cream.  We are amazed because just a few short months ago, this was a helpless baby, someone who could only communicate by crying. Crying because he's hungry, cold, sad, sick, lonely, wet, itchy, scared....

As my Mother's abilities disappear, as bits and pieces of her intellect flicker on and off, her problem solving skills no longer even match those of a determined and hungry toddler.

My Mother is in the yelling stage now.  She is frustrated by her inability to do things for herself. She is frustrated by what is going on around her, she doesn't like her clothes, she doesn't like the food, her neighbors, or her sneakers. She is frustrated by her inability to get herself out of a "problem situation", she doesn't know what to do or how to make it better.  So she yells.

She can't find the right words to communicate her needs.  She can't ask someone, "Would you please put the dvd into the dvd-player so that I can watch a movie?"  She waves her hands around and screams "hey you, HEY, HEY, HEY, disk, ugh, movie, NOW, yes, come on you can do it, DO IT NOW!"

"This is hard!"  She bangs her toast on her plate "No, no, no, no!"
"Mom, you asked for toast, this is nice toast."
"No, no, no, no!  Yuck!"  I don't think anyone could have made a better piece of toast, but it was not right, for Mom.

I brought her the jeans, Sarah's jeans. They looked very much like her old favorites.
"These aren't jeans, I'm no dummy, theses aren't jeans, no ugh, ugh.." she's waving her hands at the pants, I think pointing out that they have no back pockets. "These aren't jeans! Are you stupid?! No yellow..." She's pointing at the lack of gold top-stitching that these jeans don't have.  She balls them up and throws them on the floor.

I'm full of every emotion:
I want to laugh, she is yelling at me because the pants don't have gold stitching, since when has my Mother been so fashion conscious, about her jeans, of all things?
I want to smack her, I want to slap this nasty woman.
I want to yell back at her. "You ungrateful woman, I have been to six stores and five consignment shops, these are the only jeans for 100 miles. I've washed and hemmed them. Just wear the +*^%$ pants."
I want to cry, why can't I make her happy, why can't she accept these pants? Why can't she accept anything? She's fighting, she's frustrated, she's lost.

She is snappy and sarcastic and curt to her aides and neighbors, and me.

I am so sick of it.

pants

Again, I am buying my Mother more pants, she is growing and outgrowing her slacks.

Mom use to buy her favorite slacks from j.c.p.  For the past few years I have been able to replace her favorite pants easily.   But they have recently discontinued that line of clothes. Don't they know I have a Mother with dementia - who will ONLY wear what she knows and likes already?!!! I guess this line of clothes was too ordinary - too basic. But it was great for the way my casual seventy-something Mother likes to dress.

I went to the local consignment shop. I'm looking for elastic waist cotton slacks: denims... chinos... something similar to what she likes to wear, but in the next larger size.  I find one pair, and another, and another. Wow I've hit it big  --  pun intended!  I check the labels to make sure they are really all the right size.  Then I see them. Sarah's name tag is ironed into each pair of slacks.  My heart sinks.  I start to cry, right there in the consignment shop.

Most adults don't have nametags in their clothing.  It's not like Sarah had a great winter at WeightWatchers and now needs a new svelte wardrobe. It's not like Sarah went to summer camp and needed her clothes labeled.

Why doesn't Sarah need all her slacks?
Who has had to clean out Sarah's closet?

blueberries - part 2

"Did these blueberries come from Aunt R's yard?" Mom asks.
"No, Mom, they came from my yard."
"Oh..." she groans "Ok, I'll have one."

So, the blueberries were from the wrong garden, and she ate just one.
Yup, Aunt R has been gone at least 26 years, but I guess her berries are still the best.
I guess the wrong berries can't jog happy blueberry memories. 

I hope the staff enjoys snacking on them.

blueberries

My husband and I have started raising chickens, laying hens to be more exact. This is a new experiment for us. We started out small with our livestock, honey bees, and now we're onto larger animals, maybe next year we'll get some goats and sheep.

What has this to do with dementia?

To get the hens to come to us, to think of us as the source of all good things (food, water, and safety) whenever we go to the coop, we bring a gift. Some yummy gift. Slugs, broccoli leaves, lettuce, tomato ends, Japanese beetles, clover flowers... all stuff from the garden.  This week my husband has started bringing the hens blueberries. They love blueberries!

(All the animals in my yard love the blueberries: robins, bluejays, chipmunks, and even the wild turkeys. It's quite a sight to see the turkeys flying up into the blueberry bushes.)

Just like when I visit the hens, when I visit Mom, I try to bring her a gift.  It could be a magazine, a photo (old or new), a dvd, or maybe her favorite licorice.  (I don't count clothing and pads as gifts, she likes nor desires either, they only cause arguments. I now try to hide the clothing I bring, and sneak them into her drawers when she's otherwise occupied.)

Today I'll bring Mom a pint of blueberries.

I'm sure we'll talk about the time we went blueberry picking up on the mountain and she carried my newborn son in the backpack. I'm sure we'll talk about the forever-blue diapers from the toddler who sat in the middle of the bushes and ate and ate and ate. I'm sure we'll talk about her Dad, the reluctant picker, who stuffed his blueberry pail with pine-needles so he only had to pick enough berries to cover the pine-needles.

Let's go jog some old blueberry memories.

creativity

You have heard me talk of the AAQI, Alzheimer's Art Quilt Initiative, and the small art quilts that I make for this organization. But, quilting is a new venture for me. Something I have only learned these past few years because the opportunity to work in a quilt shop came my way.

Why would I work in a quilt shop if I wasn't a quilter?  Because I am a fabric artist, a lover of textiles, a lover of color and pattern, and most importantly I am a weaver.  Or at least I was a weaver.

My Mother's dementia has stripped me of my creativity. The chaos that has been running through my life because of her condition has chased my muse away. My looms remain bare, there is no weaving going on in my house.

My weaving business has folded.

I was teaching classes, I was giving talks, I was taking classes, my works were in exhibits, I was an active guild member, I was selling my handwoven items at craft fairs, in museum gift shops, and to customers all around the world through my on-line shop.

My looms are covered in dust and I cannot find my way back.

As I cleaned out my Mother's house, I took back the many woven items that I had made for her. The linen table runner that covered her sideboard for many years. The two large rugs from the bedroom floor. The scarf that she wore with her good coat to church each Sunday.

Today at my Alzheimer's caregivers support group we talked about expressing ourselves creatively. Spilling out our grief and feelings with art. Somehow writing this blog helps, but I miss my looms.  I miss the weaver that was within me.

My Mother has lost her creativity too.  She has no desire (impetus, need, want) to do anything. It is so hard for me to accept this part of the new her.  She is not reading, or writing, she doesn't draw or doodle. She has no desire to watch the birds or walk in the gardens. She is lost and so am I.

How can I express my grief with my weaving?  How to merge the process of creating something with the reality of losing someone?
The first thought that popped into my head, was to weave her a shroud. Oh my, how morbid.
Would I be like Penelope? Weaving the shroud by day and unweaving it at night, trying to extend time before the inevitable?  I'll have to make it blue, it was her favorite color.

the shadow

We all do it. All of us caregivers do it. We look over our shoulder to see if Alzheimer's disease is coming to get us too.
Please listen to Alanna Shaikh's TED talk. She has been looking over her shoulder too.