At the Hairdresser's

Yesterday I got my hair cut. I know, by itself, not exactly big news. But this stylist is the same woman who has done Mom's hair for at least the last 5 years, maybe 5 1/2. She said that she cannot believe the number of people who have been asking where the lady in the wheelchair is. Not just her customers, but the customers of the other stylists who rent spaces there. "It's amazing," she said, "how many lives your mother touched."


It's amazing indeed.

The End of a Long Journey

Mary Margaret Kilgust finished this stage of her life on Friday, February 12, 2010. I don't pretend to know what the next stage is, but I know that she has been released from the fear and pain she endured on this earth.

She died the way we hoped, at home, with Jeanne and I at her bedside.

She'd had a rough week, starting with diarrhea on Wednesday, which weakened her so that she could only manage to swallow 2 or 3 bites at each meal. By Friday, her breath was labored; we could hear how rigid her lungs were becoming. We went out that afternoon while an aide sat with her. We got home around 4:30. She woke up, and stayed awake. Her breathing was so labored, more so when awake than when sleeping, so after talking to the aide and the guy who split some wood for us, we fed the animals, and decided to put her right to bed. We changed her, got her into bed, and raised the head to try to help ease her breathing. She was so clearly struggling, we both stayed with her, talking to her, trying to help her relax. Then she took 3 or 4 agonal breaths, and she was gone. We'd been home less than an hour. We are grateful that she waited for us.

Mom's doctor, my college friend, had made it clear that if we wanted her there when Mom died, she would come, no matter when. So I called her, and she came right over, missing her son's school performance (she did get to go the next night and see him emcee the show). Dr. Barb declared the death, helped us put a nice dress on Mom, and waited for the funeral home so she could sign the death certificate. Her presence was a big help in keeping things calm.

Jerri and the girls were on their way over to spend the evening. Obviously, while we knew Mom was failing, we didn't anticipate she was going to die quite that soon. Jeanne called Jerri and told her not to come, and why. The girls were in the van, and Kiana listened carefully to her mom's side of the conversation, so that when Jerri hung up, Kiana said, "Who's dying?" Jerri said, "What?", and Kiana said, "You said, 'She's dying right now?' Who's dying?" Jerri told them, "Mary died." Kiana started crying, so Jerri pulled over to comfort her. "I'm so sad," Kiana said, and when Jerri asked her why, she said, "Because now Grambie doesn't have a mommy anymore." Then she proceeded to tell Jerri how grateful she was that she still had her mommy. She's a pretty amazing kid.

Avri, amazing in her own way, hadn't really been paying attention to all of this until the mommy thing came up. Then she announced that she was sad, too, and that she was glad she had her mommy.

The funeral home here in town was great. Here's a link to her obituary:
http://www.asimas.com/ASIMAS/randledable/obituaryDescription.jsp?domain_id=218&deceased_id=218644

Being present for Mom's actual death was what we wanted, but it was also the thing that scared me the most. The way it happened, though, left me feeling that being with her for that moment was a great honor and privilege. It made even these most difficult last few years worth it.

There is, as usual, much more to write, but for now, I send this notice out to the world. I love you, Mom, and I'll miss you always.

Now or Never

Kiana, Mom, and Avri

Dec. 2009

I was ready to write again the day after my last post. Guess what? It didn't happen. I'm always waiting for the correct amount of time and energy, never quite figuring out that I need to write what I can when I can, and let the rest fall by the wayside. Let's see, I was going to write about the visit to the neurologist, the last two respite stays for Mom, Christmas, and I don't even remember what else. My brother's visit. Oh, yeah, getting fired from daycare over a parking dispute. Mom is now home with us 24/7. I hope to be able to write about some of this at some point.

We brought Mom home from respite today. When we checked her in on Thursday, they weighed her. She was down to 78 pounds, fully dressed, including shoes. She still eats and drinks, but less and less all the time. The neurologist says she isn't metabolizing everything she is eating. She sleeps most of the time, which does make having her home all the time a little easier.

The picture above was actually taken a week before Christmas. Jerri and Dave were taking the girls to Florida for their first DisneyWorld visit, and didn't want them to leave without saying goodbye to Mary. There was some concern that she wouldn't make it to Christmas. You can see from the picture that she was momentarily awake and alert. She had already tuned back out before the next picture.

Anyway, when Mom came home from her December respite, she had deteriorated significantly, and we were no longer sure she would make it to Christmas. Jerri and Dave knew Kiana in particular would be upset if she didn't get a chance to say goodbye, and I wanted a last picture. Well, as usual, Mom rebounded, and though she's still losing weight, she is also still here, and shows no signs of dying this week. That's about all we can predict.

And about all I have time to write tonight. As my subject line says, my new approach to blogging (for today at least) is now or never. So this isn't much, but it's better than nothing. I hope to write more again soon.

Odds and Ends

So ever since I wrote the last entry on Music to Grieve By, I think of other songs I would add to the list. Of course, I haven't been writing them down, so this will not be a complete update. But there are some songs I would like to add.

When I finished my PhD, I made a mix cd for my advisor. Ever since I started the program in one of her classes, I knew that someday I wanted to give her two songs that give thanks--Sinead O'Connor's "Thank You for Hearing Me" and Natalie Merchant's "Kind and Generous." So I had another 70 minutes to fill on the disc, and I filled it with songs that somehow reflected the dissertation/PhD experience. I listen to that cd a lot, as it turns out, and there are some songs on there that do help me in this extended grieving process. Several are from Patty Griffin's Children Running Through cd, especially "I Don't Ever Give Up," "No Bad News," and "Up to the Mountain (MLK song)."

I also find helpful two songs in particular (there are so many to choose from) from Amasong, a lesbian/feminist chorus from Champaign/Urbana that my former college roommate belongs to. They do a lot of folk and spiritual music from a variety of cultures. The two songs I turn to most often (though only one is on my mix cd) are "I Cannot Keep from Singing," and Bobby McFerrin's "23rd Psalm (dedicated to my mother)."

Not on my 'special' cd: I mentioned Peter Gabriel last time; he has many selections that stand out, but "I Grieve" from the City of Angels soundtrack deserves special mention for this purpose.

Yesterday I listened to Shawn Colvin's Fat City. The lyrics sometimes reflect her relative youth in 1992, but her songs are usually thoughtful and emotional, and that works for me. This was also my first Shawn Colvin cd, so I always think of it fondly.

And lest I forget the most important song from the most important film ever made, let me add Judy Garland's "Somewhere Over the Rainbow." I grew up loving that movie, my parents both loved Judy Garland, and "Somewhere Over the Rainbow" is one of the last songs I could get Mom to sing along with. "You are My Sunshine" is the other one. Israel Kamakawiwo'ole's version of "Rainbow" is also a favorite, but in my world, nothing compares to Judy.



Moving on from the music, there is one other item I wanted to post. Yesterday, a friend asked me in an email how my day was. I responded with unusual thoughtfulness on my part, and realized that what I wrote I could have written for this blog as well. So I am inserting a part of it.

"My day is winding down. We get a little online time while watching Mom eat her dinner. She eats herself, but needs some coaching and prompting, and lots of cleanup. But for those 30 minutes or so that she's actually eating, we get a short break. We'll eat after we put her in the recliner, just as we did when you came. It's been an emotional day for me. More and more in the mornings, after getting Mom up and washed and dressed and fed and off to day care on the van, the impact of her long, slow dying, and the prospect of her actual death getting more real and foreseeable, all puts me in touch with a grief that doesn't moderate with time. It's worse on the mornings I go to yoga, as I did this morning. Yoga makes me slow down, breathe, and become aware of what's going on internally. And now the end of the day, near the end of the week, and I'm tired. It was a good day overall, mostly because it started with yoga, and no matter what that brings up, it still feels better to start the day that way."

And so it goes.

Music to Grieve By

So today I thought I'd write about some of the music I listen to that is most helpful as we live with Mom's care. And the truth is, it is music to grieve by. Every day as I watch Mom deteriorate, even slightly, the grief continues and accumulates. It's as wearing as her daily care. It is, in fact, almost inconceivable, which is why finding something like music that acknowledges grief, accesses it, and/or comforts it is something I spend time thinking about.

(Warning: I'm a Lilith Fair kinda gal, which explains the pool from which I dip. )

The most obvious choice is Rosanne Cash's Black Cadillac (2006). Written after losing her stepmother (June Carter Cash, d. 5/15/2003), father (Johnny Cash, d. 9/12/2003), and mother (Vivian Distin, d. 5/25/2005) in the space of two years, the album is clearly a personal portrait of loss. At the same time, Cash leaves room for the listener to access his or her own grief, whatever that may be. Two of my favorite songs include "I Was Watching You" and "God Is In the Roses." Throughout the album, Cash speaks directly to, about, and for her parents, especially her dad, Johnny Cash. In "I Was Watching You," she speaks to him, singing, "All these years to prove how much I care / I didn't know it, but you were always there / until September when you slipped away / in the middle of my life / on the longest day / now I hear you say / I'll be watching you / from above / cause long after life there is love."

Lest you think she gets maudlin, in "God Is In the Roses," she takes the stock image of a rose and makes it concrete and real, playing, I believe, on the cliche, "God is in the details":

God is in the roses
the petals and the thorns
storms out on the oceans
the souls who will be born
and every drop of rain that falls
falls for those who mourn
God in in the roses
and the thorns



The sun is on the cemetery
leaves are on the stones
there never was a place on earth
that felt so much like home
we're falling like the velvet petals
we're bleeding and we're torn
but God is in the roses
and the thorns

If I could play one song at Mom's funeral, that would be it.

There is also Cash's song "September When It Comes," from her Rules of Travel cd. It's her only recorded duet with her dad, and it's unbelievably touching. He was clearly weak when they recorded it, and his voice is a little scratchier than usual. Plus it's about aging, and was recorded in his last years. I heard Rosanne interviewed on NPR's "Fresh Air" after it came out, and the whole concept of the song and performing it with sick father was incredibly moving. Here's one verse:

"I plan to crawl outside these walls / Close my eyes and see / And fall into the heart and arms / Of those who wait for me / I cannot move a mountain now / I can no longer run / I cannot be who I was then / In a way, I never was." To hear Johnny's voice creaking a little on that verse is poignant, to say the least. And then for him to actually die in September--that's synchronicity.

Another album that gets frequent play around here and helps me keep in touch with my grief is Annie Lennox's Songs of Mass Destruction. While not specifically about grief, both the tone and lyrics set the mood. Most notable for me is the song "Dark Road." It was on this morning, and these lyrics jumped out at me: "I can't find the joy within my soul / it's just sadness takin' hold / I wanna come in from the cold / and make myself renewed again / it takes strength to live this way / the same old madness every day / I wanna kick these blues away / I wanna learn to live again." It's not that I feel my life is that oppressive all the time, but sometimes you just have to give vent. Another song on this album that gets me is "Lost." On this one, it's not the lyrics as much as Lennox's plaintive voice wailing that one line, "We're lost." It speaks grief to me, and speaks to my own grief, watching my mother die by degrees.
Of course, Lennox plays some much stronger, driving songs, and those can help process feelings, sometimes regardless of the lyrics. It's a very addictive album.

The other album on my most frequent rotation list really has nothing at all to do with grief, but Sia's singing is moving nonetheless. Some People Have Real Problems is my favorite, but Colour the Small One has some great songs, too. I got interested in Sia after seeing her phenomenal video for "Soon We'll Be Found." I'd never seen anything like it. Then my granddaughters fell in love with it. If Sia is playing now, and that song comes on, Avri freezes and says, "Listen! It's my favorite song!" She and Kiana try to do the signing then (she does some ASL in the video), but that usually evolves into general interpretive dance. Anyway, Sia is a great one for a contemplative soundtrack.



Looking at an incomplete list of my itunes music, the Beatles get several mentions ("The Long and Winding Road" being the first one to pop into my head), Elton John a few (see, I do listen to some male music), Peter Gabriel, and a few odd other assorted characters. More to be added? No doubt. I could revisit this topic over and over, I believe.

Incredible tenacity

Well, apparently this positive thinking isn't working as well as I'd hoped. Six weeks since the last time I wrote. Honestly, though, I did feel like writing again the day after I wrote that last post, but I had so many other things to do, I waited. And then I just had so much to do. How does one get out from under this?

I have work. I only work part-time, but it is teaching, which always needs more time than you have. Right now I've got two sets of assignments for each of two classes to grade and return. And this is my afternoon off, so I won't do it now.

Besides my "regular" job, I have Mom. And we do get paid for taking care of Mom. Though I prefer my oldest brother's way of saying it: "If you don't have enough money to live on, then you won't be able to take care of Mom." So we get paid by her trust (thanks, Grandma, for willing enough money to Dad that Mom can be provided for after his death!)

Mom is still holding on with incredible tenacity. She's down to 97 pounds, fully dressed, and she's all muscle and resistance. We try to get her dressed in the morning, and she clamps her arms to her sides, and steels her knees so they can't be separated. We try to get her to drink, and she won't swallow. We try to brush her teeth, and she grabs our wrists with a grip that leaves bruises. It gets frustrating, and no one really understands what it's like. Half the time I don't even understand what it's like. I think about how much time her care requires, and sometimes I wonder how she can so completely zap my energy. Then I think about the battles we try to fight on her behalf (the latest being with her day care about the absence of safe parking they provide), with her battling us at the same time, and I don't have to wonder. But keeping that awareness present, so I remember that I'm not crazy or whining, is difficult.

Now that I've started writing, my mind is uncovering all sorts of threads to write about. Can I retain them for more than a minute?

We almost folded the other week. We have three cats and a dog. Our cats our 13 and 14 years old, so they have some health "issues" of their own. One has a special food to prevent tartar build-up on her teeth. One has arthritis, so needs to eat a soft food we can mix her Cosequin into. The third one has kidney disease. We almost lost her last November, but she's doing really well now, thanks to a special food she doesn't like and to twice-weekly subcutaneous treatments. If you're not familiar with what a subcutaneous treatment is, it's basically giving her an IV. Which she hates. We bought a special bag to bind her in so we can control her long enough to stab her and squeeze 150 mls. of fluid into her. We have to feed the three cats separately since they each have their own special foods.

Then two weeks ago we had to take Cleo the wonder dog in for a teeth-cleaning. She had to have two broken incisors removed, which put the cost at you-don't-want-to-know, but worse than that, she wouldn't eat, had accidents overnight, and had diarrhea for ten days in a row. That was the straw that came perilously close to breaking the camel's back. I really was not sure I could take care of one more living creature. Oh yeah, I was simultaneously conferencing with my freshmen, what they call "developmental advising," making sure they weren't failing school and/or suicidal. It was a lot all at once.

But, here I am, with an afternoon off, but ending this post before I tell EVERYTHING there is to tell. Jeanne wants to use the computer as we sit here in Starbucks, and I really should let her. Besides, I don't want to get into the habit of this writing thing. People might get the wrong idea.

p.s. I am aware of the irony that I need to take an afternoon off from caring for Mom in order to have time and energy to write about caring for Mom.

Trying to think positively

Mom smiling, 5/29/08 1:30 a.m.

It happened rarely enough even a year ago to make it a picture-worthy occasion.

I feel like this blog, though I seldom write to it, is too often negative. Perhaps I've been inspired by Julie & Julia, but I can't help but wonder why anyone would want to read this. And maybe that's not why I'm writing this--it's not my 'stated' reason--but still . . . . If it didn't matter if no one reads this, I would just be writing in my journal. By the way, I don't write in my journal at all anymore, and haven't for years, so I guess I'm not doing too badly by this blog.

Anyway, I've decided to try to write about the positives of caring for Mom. Unfortunately, at her stage of the disease, those are few and far between. This morning, for example, Mom smiled when we woke her up. She smiles now about once every 3 or 4 months. The neurologist says she has lost the ability to smile. But this morning, she looked just a little like she was smiling, and when I spoke to her with my own big smile, the left corner of her mouth turned up just a little more. Enough to qualify as a real smile. But not enough to see in a picture.

After Mom was diagnosed with Alzheimer's, back in '96 as far as we can tell, she did well for quite a while. Once it became more and more apparent that she couldn't live alone much longer, Jeanne and I asked her to come live with us, not because of obligation, but because we loved her, and enjoyed her company, and we wanted to do this for her. When the time came that she did indeed need to move in with us, it was still sometimes hard to tell how advanced the disease was. We still talked, and laughed; she even voted in the 2004 election via absentee ballot. We asked her if she wanted to, and she said yes, as long as we didn't tell her who to vote for. We watched the Kerry-Bush debates, discussed them, and let her come to her own conclusions. She had definite opinions. Then I helped her fill out the ballot and mailed it in. She didn't like to order her own meals at a restaurant anymore, but she always took voting pretty seriously. That was a decision she still wanted to make.

Her disease has advanced slowly, which allowed for some quality time in those first couple of years living with us. But she no longer has that quality of life. She rarely responds even to our granddaughters or the dog, and they used to be the light of her life. Mom is enduring more than she's really living.

Jeanne and I did, as alluded to earlier, see Julie & Julia earlier this week. It's a wonderful film, and Meryl Streep is an absolute delight as Child. Afterward, I couldn't help but think, "Mom would have liked this movie. Unless, of course, it would have made her feel inadequate about her cooking." Mom was a great cook, but did not try anything remotely Julia Child-ish. Confidence--about anything--was not her strong suit. Her most elaborate dish was Beef Wellington, which my dad insisted she learn how to make after having it at a hospital fundraiser. She made it every year for Christmas until too many of us became vegetarian to make it worthwhile. She may have watched Julia on occasion; she liked her, though her favorite cooking show was "The Galloping Gourmet." Still, I believe she watched these shows for entertainment. She was interested in their cooking at the spectator level, not the aspiring gourmet chef level. At least Mom still likes to eat. And believe me, the quality of the food matters. She's not picky, but if she doesn't like it, she won't eat it. There are some aspects of quality of life that still matter to her.