I Was On The Radio

I had the honor and priviledge of being interviewed by ArtScene host and producer Erika Funke at NPR affiliate WVIA in Pittston, Pennsylvania this past June. 

I was teaching for several guilds in the area. Erika was willing to stay late at the station, and the quilters toting me around were willing to make a detour so that I could talk about taking care of Mom and the Alzheiemer’s Art Quilt Initiative.

I’ve been interviewed a couple of times over the phone where I can pace and perspire in the comfort of my own home, but actually being in a radio studio, an NPR studio, was so exciting, and thrilling! It was also just a little terrifying. 

In addition to worrying what Erika would ask, what I would say, and who would hear it, I also worried about uncontrolled coughing, sneezing, hiccupping and other embarrassing bodily noises that might be released in my nervous state.

As soon as we began talking, Erika put me at ease.  I knew she was genuinely interested and she was going to help me through this.

Yes, the microphone has to be right in front of your nose. We peered around our respective obstacles as we chatted.

Erika is part mime, part actress, and part mind reader. Without speaking (with just facial expressions, body language, and hand gestures) she let me know if I was on track, or if I needed to expand on a thought, offer clarification, or leave it and move on. 

After I returned home I sent Erika digital files I had made of Mom and I singing together. You’ll hear those at the end of the interview.  

Please listen to the podcast of our interview, made available by WVIA on their website. Here is the direct link: http://stream.publicbroadcasting.net/production/mp3/wvia/local-wvia-863892.mp3

There is information at the end of the interview about the Susquehanna Valley Chorale. They have just hosted “Alzheimer’s: Forgetting Piece by Piece” and will be performing “Alzheimer’s Stories” for the very first time on October 9 in Bucknell University’s Weis Center for the Performing Arts in Lewisburg, PA.

Composer Robert S. Cohen and librettist Herschel Garfein created a stunning 30-minute, three movement choral work with chamber orchestra accompaniment from the comments about Alzheimer’s posted gathered on the Chorale’s web site. If you are anywhere near Lewisburg, don’t miss it.

This interview was first broadcast on October 1, 2009.

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OK, I Changed My Mind. Again.

I’m allowed.

In speaking with the quilt in question, the one made from Mom’s shirts, we decided that my original anal plan was the one go with. It felt more comfortable.  It involved less “quilty thinking” and more “Mommy thinking,” which was the whole reason to make the quilt.

I was stressing too hard about my assymetry. It happens. I retreated to my comfort zone.

There is another quilt brewing that will be a little wackier, but this one just needed to begin and be done. The angst of planning it (or letting go, as the case may be) was overshadowing its primary purpose, so Mom and I went back to Plan A.

How anal is that?

 Fairly. I cut up 12 different shirts a different color. From each shirt I cut six of each of the three size.” (I planned on a few leftovers.)  The fabrics were distributed evenly throughout the quilt top. I studied and squinted, and found no duplicate blocks. (If you spot one, please keep it to yourself.)

I created a series of three nesting templates so that I could center each of the  four squares precisely. The grain of each patch in the block runs in the same direction. Every time I fused I smelled the detergent the Alzheimer’s facility used and I smelled Mom. I probably should have just skipped the quilt and ironed her shirts.

Originally I was going to hand blanket stitch everything in place by hand. I gave that up after the first block. Majorly annoying, a real pain in the fingers. Cotton and spandex knit does not give itself up to the needle easily. Neither does the fusible interfacing that backs each background square, nor does the fusible web 1/2″ under the raw edge.  (Yes, each of the 54  6″ background blocks,  all 72 blocks (and their corresponding  fusible web) were fussy cut. And you wonder why this is taking so long?) 

The next plan was to blanket stitch around the outside edges through backing and batting, “blanky-quilting” it down.  The thought of wrestling the concentric squares (attached to the quilt) around and around made my wrists ache, so I opted to do that part block by block, pivoting at each corner. Thank you, Sulky; I love the 30 wt black cotton—all 500 yards of it. And yes, I did fish the tails to the back, tied two square knots to secure them, and hid the tails in the stitching… 216 times. Repetition frees the soul.

I joined the blocks with a sashing strips (regular quilting weight cotton) so the thick seams of Mom’s pants (the black) would never have to be folded back onto itself. It’s a heavy quilt, but it will be flat. I hand-basted each seam allowance in place with water soluble thread so that it would stay where I put it. Who knows when I’ll get to quilting it.

For right now, I’m putting it away so I can move on to other things. I’ve saved all the extra fabric. I’ll let the quilting design percolate a little before I decide exactly what to do.  Too many decisions right now.  I’m going to iron some more of her shirts and see what I feel like.

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More Better

I have two quilts planned for Mom’s clothes.  Since she or I made most of her pants, and when she was well she wore pretty wild stuff, I decided Goodwill would never find a long-legged match for them. Besides, they were beyond “gently used.”  There will be a quilt from her pants later, maybe with a wild sock border. Still pondering.

Mom’s shirts were another story. They were fairly new and I felt a little guilty about chopping them up. Nonetheless, they have been “filleted” (cut apart at the seams, another Mom-ism) and as I work around the stains, I’m feeling better about it.

I knew from the start I wanted a series of  squares within squares set on black with a hand-sewn blanket stitch in black perle cotton around all the raw edges. Not that my Bernina wouldn’t do a fantastic job, this quilt just needed to be needled by hand, slowly, over time, to let the sad out and the happy back in.

So, the last couple of days I’ve been fusing Pellon’s 906F, a very lightweight fusible interfacing, to the wrong sides of Mom’s cotton/spandex shirts and the two pair of LLBean extra long black stretch slacks. I got to cutting the patches out and arranged the first four last night.

There was something very satisfying about the colors. Each block would be a different combination. It would be bright, and cheery, and… boring.

Mom wasn’t like that. She was wild and exciting. Although she could, she never colored within the lines.  That had already been done before. And she never lined things up! I’m the anal one. I’m Monk. I actually took a ruler and measured all four sides on each square in an attempt to get the patches perfectly centered, one on top of the other! And yes, it DOES bother me that the blocks aren’t lined up in the photo. I can’t imagine how long I would have fretted before fusing. Nope. This wasn’t her.

This may not be her either, but as she would have said, it’s ”more better.”

I can still see too much me in there, but it’s a start. Maybe with practice I can push a patch or two beyond the boundary of the patch beneath it. That will be my new challenge.

I was thinking of drawing a line 1/8″ from the edge so that all the stitches would be even. Maybe I should purposely make some really long instead. I need to embrace my inner asymmetry. With each design choice, I will channel Mom. What would she have done? Wish me luck!

Wigging Out

Madison T. Dog here again. Mom’s laughing too hard to type. She was cleaning out Beebe’s closet upstairs and found her clown wig. My Nannie used to be a clown.

She went to Clown College when she was in her mid-70’s so she could entertain the old people. She talked in a funny voice, painted faces, and once got stopped by the cops on the way to a performance. (She was dressed in her clown outfit at the time.)

All the reminiscing. It was such fun. And then Mom leaned over with the wig and before I knew what was happening I was blond and curly!

I’m hoping I get an extra scoop of kibble for this.

Could I please remind readers that I am a BOY dog. Is there a union representative I should be talking with?

Whatever you do, do NOT under any circumstances tell the squirrels in the back yard. I would never be able to live it down. I’m just grateful they have dial-up and won’t wait until all the pictures load.

Madison, like President Madison, not Dolly.

Towel Hugs

I’ve been spending a lot of time “nesting.”  For me, that’s attending to small projects around the house. Nothing major, just putting away the clutter and cleaning drawers and closets. Organizing. Taking inventory. Weeding stuff out, and re-purposing. I’m not a big thrower-outer. I have pack rat tendencies.

Major stuff would be cleaning out the garage. All of Mom’s things from her room at the Alzheimer’s facility are making it pretty hard for Steve to park in there.  He is motivated to clean the garage. Me? Not so much.

I re-purposed towels. The towels were in the garage, so I am helping. Just not very fast. The towels had BEEBE monogrammed in wide-tip black marker on the part near the edge. That was so that all her towels wound up in her room and not someone else’s. Marking them I thought of summer camp where you do the same thing.

I liked the towels. They match our bathroom, coincidentally. And I liked that fact that they were Mom’s. I just didn’t like staring at her name.

So, I found fabric that looked like they were from the quilted shower curtain on the opposite wall, and I cut strips from it about an inch wider and an inch longer than the woven part of the towel.

I placed the strips on the towel and folded under the edges to cover. Then I pressed Steam-A-Seam onto the wrong side of the strip. After peeling off the remaining paper, I just plopped the fabric strip over the BEEBE, fused, and top stitched the fabric strip in place at the crease of the fabric.

I did all Mom’s hand towels and all her bath towels.

So now, every morning, I get a towel hug from Mom. It’s a nice way to start the day.

 

Thank You

Thank you for surrounding me with love. The hundreds of blog comments, emails, cards, and letters of condolence have touched my heart in ways I can’t even begin to express. Through my tears I’ve read them all, most of them more than once, grateful for the kindness and the wisdom you shared. I have printed the e-stuff, punched holes in the letters, and put the cards in plastic pages all in a big binder because I’m going to read them again. Some are so profound I want to use my yellow highlighter!

I’m discovering that grief is a lot like menopause. Tears come like hot flashes, when I least expect them. Unlike the hot flashes I am learning to recognize the triggers:  sights, smells, songs, basically anything that reminds me of Mom. Yeah, I’m a mess. I should buy stock in Kleenex.

But, I am acknowledging my grief. That’s a good thing.  For so many years, I just put a cork in it and soldiered on. It’s a new experience.

And what am I learning?

1. Blinking quickly doesn’t make tears evaporate off your eyeballs. You can’t blink that fast. Best to just give it up and wipe your eyes. A good nose-blowing works wonders too.

2. Don’t attempt to acknowledge condolence cards in public, like on an airplane. (See #1.)

3. Don’t NOT think about the person you lost because you’re cheating yourself out of the experience of remembering. Let your mind wander and go where it needs to go, otherwise your head might explode. (Just wait until you land.)

4. If your mom wore Channel #5 go the the perfume counter at the department store, find the free sample, and spritz some on. Sometimes walking around all day smelling your wrists is just what you need to do.

5. In the depths of your sorrow, if you have an urge to build a snowman, obey the urge. It’s great fun, especially with your grown-up daughter. While you’re embracing memories of the past you need to make memories for the future.

6.  ”Final arrangements” should comfort the living.  If you want to throw a party to celebrate the life of the one you lost, the people who love you will not only understand they will help. (Hey! I’ve got some serving dishes and spoons with no names on them that aren’t mine. If you’re missing something, I’ve got them!)

7. There’s no “right way” to do a lot of things. Grieving is one of them.

8. There probably IS a “really good way” to sew little squares cut from Mom’s cotton/spandex shirts into a quilt, but for the life of me I can’t figure out what it is. Special needle? Stitch? Foot? WHAT?! Can you help me out?

Ami Simms

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Her Name Was Beebe

I have been losing my mom, bit by bit, for at least the last seven years, whenever it was that Alzheimer’s first began its dirty work. I lost the rest of her this afternoon as I stroked her hair and told her how much I loved her. Jennie and I said good-bye as she took her last breaths, hopeful that she heard our voices, felt our caresses, and knew in her heart, if not in her mind, how much she was loved, what a good mother and grandmother she was, and how many lives she touched with her gentle spirit. We told her that she would live in our hearts forever, and she will.

Beebe clung to life longer than any of us expected, surprising two sets of hospice carers over the last 27 days as we kept vigil, first at the Alzheimer’s facility where she had lived for almost three years and at the hospice care center where she died. (Beebe’s obituary.)

I have made Beebe’s struggle with Alzheimer’s a public one. Sharing it has helped me deal with the grief and frustration of losing her over the years. It was also the only way I could think of to fight back. Connecting with others who walk along the same path has given me strength. Knowing that our journey has helped others cope has kept me going. Reading the comments you have written over the last month especially have given me comfort.

My job as personal advocate for Beebe is now over. The part of my brain that had to keep track of her safety and well-being, the minutia of caregiving, can now be filled with other pursuits. Although I will continue to fight Alzheimer’s in her memory, it is time now for me to reconstruct that memory, to focus on the woman who was my mother, not just on the woman who had Alzheimer’s and needed my care. 

For many years I assumed the role of her parent; now it is time to switch back to being her daughter, to remember her throughout her whole life certainly, but to refocus my memories of her before the Alzheimer’s. During the last year I had to retrain myself to call her Beebe instead of Mom. It never felt right, but she simply forgot she was a mother and wouldn’t know someone was talking to HER. So, she was Beebe to everyone, including me. Now I can call her Mom again.

Mom was a hoot. She loved to make things, to grow things, and to learn things. She had a slew of friends from all walks of life who always smiled when they were with her. She loved to laugh. You just weren’t the same after you met her. I’ve spent the last six hours trying out all sorts of ways to share what she was like with photographs and comments and I’ve come to the conclusion that my family pictures and quaint stories are only fascinating to me and a few friends who love me too much to tell me otherwise. 

So, I thought I’d take another tack. I’m sure some memories with corresponding photographs will ooze out in the blog in the months to come, but for right now I’ll share some phrases that have been in my lexicon my whole life, thanks to my mother. As they’ve popped out of my mouth these last weeks I was reminded how uniquely “her” they are,  except that she probably picked some of them up my grandfather because my cousins pepper their language with some of the same Beebe-isms!

When Steve and I married they became part of his vocabulary. When Jen came along they worked their way into the next generation. I want to share them with you because just recalling has made me smile. Maybe you will too and when you pass them along you’ll think of the remarkable woman who gave them to me.

WASH YOUR PAWS: You’d want to do this before eating, even if you use silverware but especially if you don’t. Similar to WIPE YOUR PAWS, like when you come in from outside and your shoes might be muddy. Also useful for small children when crossing the street: “Give me your paw.”

TROWEL: Something you dry your paws on if you’ve just washed.

SHOVEL OVER: What you tell someone you want to sit next to when they are mostly where you want to put your butt. Could be a sliding over in the back seat of the car, on the sofa, or on the front stoop.

MAROON: A sad discovery of limited intelligence that could have been avoided had the person just not opened their mouth and allowed the rest of us to simply wonder.

STOOP: So incredibly similar to a maroon that they are interchangeable. Nothing, however, like a front stoop.

DESTRUCTIONS: Sewing patterns come with them, so do children’s toys that need to be put together. You’re supposed to read them before you start.

ORAFICE: The place where you work. As in, “See you later, I’m going to the orafice.”

SPOOM: The eating utensil that is next to your knife and near your fork.

BERSERK: What you get to eat if you finish all your vegetables.

STOMACH CAKE: A kind of berserk with frosting. If it is served in honor of your birthday then it comes with candles and maybe ice cream which you can eat with a spoom.

TOOKIE: Another kind of berserk. Many people like chocolate chip tookies.

FLUTMEAL: Named for the sound this breakfast cereal makes when it is cooked on the stove: “flut….flut…..flut.” (Not Cream of Wheat.) Flutmeal also makes good tookies.

HYSTERICAL MUSEUM: Like the Art Museum, but the displays are about events of the past.

That’s it for now. I’m not going to make it in to my orafice for at least a few more days so if you would like to share a comment, please do so here on the blog.  And now that I’ve posted I’m going to reward myself with a flutmeal tookie, Mom’s favorite kind. As always, thank you for your kindness and compassion.

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Hospice Continues

Mom continues to fight with strength seeming to come from nowhere. She has allowed us to feed her small amounts of soup and apple sauce, Jello and other soft foods, some liquids, but I can’t tell you when that started because all the days seem the same to me. I can’t imagine how the small amount of food she has consumed can sustain her. She weighed 84 pounds sometime in October; I can’t imagine what she must weigh now. She looks more emaciated than any body I have ever seen.

Mom sleeps most of the time. She goes through periods of apnea when she stops breathing, sometimes for as long as 20 or 30 seconds and then starts up again. I try not to listen to each breath, but it’s difficult not to. When she is awake she stares upwards and to the right. I sometimes move to where she seems to be looking, but there is no focus there.

Her words are gone. It has been days since she attempted to speak. If she is startled her face shows panic. Although I don’t think she understands the words, telling her the bed is going to move, someone is going to change her, or roll her over, for example, goes a long way to keep her from becoming startled.

The beds at the hospice care facility can be lowered all the way to the floor to prevent falls. They put gymnastic mats on the floor on either side. It has been several days since I saw Mom even try to get out of bed. The staff no longer walks her to the toilet or commode. They change her and bathe her in bed. The most movement I’ve seen is when she tries to get her arms out from under the covers. She no longer can turn over herself. She has to be turned.

I am a little slower moving these days too, not surprisingly. Getting up in the morning is harder, getting ready takes longer, eating is a chore. The drive to hospice is about 30 minutes, along the same route to the elementary school I used to teach at. (Yes, I have gotten in the wrong lane exiting the freeway, my brain on auto-pilot and obeying signals from the early 80’s to go to school.)

I bring sewing and computer work to do, but don’t seem to get anything done. I hold Mom’s hand or stroke her hair, tell her I love her, and watch her breathe. I play music on my iPod for her, classical stuff mostly and songs from her era. I don’t know where the time goes. I sometimes go back after dinner to be with her too, but I’m trying not to if only to pace myself. At night I fall into bed, get up, and do it again. 

The hospice staff has been excellent, and the idea of being actively involved in the dying process seems to make a lot of sense. Alzheimer’s complicates this, however. Verbal assurances of love, forgiveness, remembrance, and acceptance are communications Mom’s damaged brain can’t receive. Before this most recent decline she literally couldn’t hold a thought longer than a few seconds. Yet, recognizing this sad fact in my own brain doesn’t stop my heart from attempting it anyway.

I remember early on in the disease I was always taken aback, surprised, by her strange behaviors or lack of logic. She looked like my mom, her voice was the same, her mannerisms and speech patterns identical. Yet she would say or do the strangest things and I was always fooled. As the Alzheimer’s progressed her mannerisms changed, even her gait changed. I got used to the strange language, irrational thoughts, and odd behaviors. She looked and acted differently. I expected the Alzheimer’s when we interacted. Now, when she sleeps she looks so peaceful and remarkably “normal.” Her odd reactions to the world around her are so infrequent that I am fooled again into thinking her brain isn’t broken. Oddly, that seems to help.

Thank you for keeping us in your thoughts and prayers. It will take months for me to catch up with all my unread emails, but I do read each comment you post to the blog. I’ll get to the other stuff eventually.

Ami

Hospice Care Center

On Tuesday (Nov. 11) I moved Mom to the hospice care center. Although she had been receiving hospice care at the assisted living facility since mid-August, after her fall on Sunday (which could have been prevented) I lost all confidence that the assisted living facility could keep her safe. She is receiving much better care now.

Sadly Mom’s “recovery” at the end of last weekend, while spectacular in comparison to being totally non-responsive, only returned her to the cognitive level she was before the downward spiral: extremely confused and dependant on others for her most basic needs. She can’t, for example, remember how to sit. She has  to be “cued,” the process broken down into micro-steps. She has to be supported and walked to the chair, rotated, coaxed to take a step backwards, told that what she feels on the back of her legs is a chair, her hands placed on each arm rest of the chair (a fairly long process if she is holding on to something else at the time) and told to bend her knees. Sometimes that won’t even help as she will lock her knees and refuse to bend. We re-approach and start again from the beginning.

Still, the few bursts of “clarity” she experienced, whether stray phrases from the past temporarily unlocked or true thoughts allowed to exit, were moments I will always treasure. With the “recovery” came a period of what I can only describe as hyperactivity. She was almost constantly in motion, trying to sit up, stand up, moving her arms around, reaching and “picking up” unseen objects, picking at her clothing, pulling at her fingers. I don’t believe she slept more than a few hours in two days.

She has not eaten anything since Tuesday and adamantly refuses food or drink whenever it is offered. We are by her side, just waiting. Her body is telling her it’s time, but her spirit just isn’t listening. I am not surprised. This is the woman who never wanted to leave a party, or stop sewing (or painting, weaving, or dying fabric) until she was ready to fall down from exhaustion because she was afraid she would miss something.

Without nourishment of any kind she is, amazingly, still able to stand and walk with assistance. She is alternately agitated and confused, or sleeping peacefully.

The strange ability to speak some coherent words every once in a while has diminished, although she did seem to know who I was for a moment and called me by name. On Wednesday, I told her it was my birthday and she said, “Happy Birthday.” Yesterday she said, “I love you, Pussycat.” I don’t think at the time she knew that was anything beyond just a phrase she used to say, but since she used to say it to me and I happened to be there to hear it again, I am grateful for the gift. As soon as she uttered it she was gone again.

Jennie and Steve are with me and I feel your prayers and support.

Thank you,

Ami

More Ups and a Down

Beebe continued to do well on Friday and Saturday. Hospice staff who come out to the assisted living facility to check up on her have been amazed at her recovery, one nurse saying in more than a decade of nursing he’d never seen anything like it. She ate well on Friday and Saturday, gaining back more strength. She took several laps around the facility pushing her own wheelchair (with us hanging on to her for dear life). Truly amazing.

She appears to be more talkative, uttering a few more real words amid the gibberish. Some even match up with questions we ask. Jennie sneezed and Beebe said, “God bless you!” When asked if she wanted something to eat she said, “Why the hell not?!” Asking “Hello Beebe, how are you?” gets her to open her eyes, shoot up her eyebrows and say, “I’m fine, how are you?” This many words in a row that atually make sense is not something we have heard since spring. She has even been able to focus her eyes on my face once or twice when I speak to her.

It is hard to say why this is happening. She hasn’t received her pills for almost a week, perhap a side effect from the drugs that stabilize her mood is sluggishness.

She is also extremely restless, she sees things that aren’t there, and random thoughts trigger fear and aggitation. Because of her Alzheimer’s, she has no appreciation of her surroundings. Her newfound strength is now a major concern as she is able to move her body into dangerous situations without knowing it.

Just after midnight yesterday (Sunday) Beebe got out of bed. The person caring for her didn’t change the batteries in the radio receiver they carry for Beebe’s bed alarm. After realizing it wasn’t working,  the care associate just listened for the bedside alarm,  which was turned down so as not to frighten Beebe. Beebe fell and cut her head.

No broken bones that we can tell, but Beebe’s restlessness and aggitation have increased and she only ate very small amounts of food on Sunday. I don’t know if this is due to the fall, sleep deprivation (she didn’t actually sleep until 6am) or even less remnants of the drugs that she used to take in her system.

I’ve not had a chance to get to emails, but I have read your comments to the blog. Thank you so much for your thoughts and prayers. Your comments have given me strength and comfort.