About Me

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Spokane, WA
This profile photo is my mom and me at the beach--she is 26 and I am about 18 months. LOVE the joy!! I am a mom of three and a teacher; being a teacher means I have to go back and cut the f-bombs. There were a few. Because Alzheimer's sucks badly. This blog, for nine years now--skipping a few while I was too cheap to buy my domain name-- helps me un-peel and process the endless layers of sad woven with weird and--impossibly--comedy.

Wednesday, December 21, 2011

Crumbling Foundation

The dream I had last night would be a perfect case study for an Dream Analysis 101 course.
First, neighborhood parties were happening to which we were not invited. Kids weren't inviting Alex to play with them, and I was upset because winter wasn't coming and everyone's flower baskets were still thriving, even in December. I couldn't back up my truck (I had one that I couldn't maneuver)because there were large household objects in the back and too many tables and people were in all the suddenly undeveloped neighborhood streets. And once inside our home, I noticed that the house appeared to be circling and shifting. WAIT FOR IT.
Mike doubted what I was saying until the stairs started caving in and the ceiling began falling as the walls started to buckle inward.
So I left and walked past a flea market in which I started perusing vintage magazines. I saw a photo of my little brother as a teenager. Then I flipped through the pages and there were all these glamour shots of my parents when they were first together. Ones I'd never seen: Gorgeous. My mom, resembling a glowing, Amelia Earhart in a wide fur collar. Holding newborn me, giggling. So I had this woman start recreating all these magazine shots into photos that I could keep. I saw my mom as a glamorous and happy woman; my parents the adventurous, carefree and apparently wealthier couple that they never were. And it didn't matter that my brother in present day walked by and didn't see what I was talking about. But I felt whole; I wasn't worried about my crumbling house or the fact that I wasn't invited to any parties or that I didn't want to go visit my mom in her nursing home-the one that does exist, for real--where she isn't really sure who I am anymore.
Analyze that.
As my former therapist from the 90's used to say, (I went to him to talk about my mom, of course!)
"Whew. That's big stuff."

Thursday, October 27, 2011

The crying nurse aid's prayer list

When I first walked in, my mom saw me from across the all-purpose room and smiled. When I sat to talk to her I thought she was on a new medication. She was talking all nervousy and giggling a lot. She knows when either I or Chris is here that it's time to be funny, at some level. There was no reason to laugh and I found it maniacal until she stopped laughing and stabilized and I realized that she was just happy. Tiny bit of joy.
She was wearing God knows whose sky blue colored sweater vest with a white sailboat and pink highlights. A red rubberband held back her bangs in a ponytail and she had no glasses on, so the view of "The Waltons" on cable across the room was blurry but she was never much of a fan.
Where are her clothes? They aren't in her closet, or on her body. Laundry? No one else is wearing them.
I brought out a small photo album from when she and my dad were first married; photos of their first kitten, Frank. I was trying to make her laugh by calling him "Fancy photogenic feline Frank." (They had a professional portrait of him from 1966).
She did some rounds of walking when I began talking with a few of the nurses' aides.
There's one woman who is always there when I am, and each time Chris and I have been. He always remarks that she looks like she's about to lose it at any moment. Turns out nothing makes her more sad than watching my mom and I. She has no idea how my mom was before except that it doesn't matter to her. She and my mom play games together each night she's on shift. Anyway so after 50 minutes of the same old thing- me walking around to find her glasses, taking a look in her tiny vertical closet- (seriously, where are her clothes?) walking down the halls and mouth breathing all the while to avoid the pissy stench which she comments on periodically. I had to go. I was feeling sad anyway, before I went. During one of the laps we made, she said "I just would like to take a bath." So I ran over to a nurse aid to see if that could be arranged. That simple wish made me so sad. Like a child asking for one marble. No, a small feeble child with British accent..Tiny Tim.
Turns out she WAS on the bath list for tonight-
yeah. I still want her out of there. I have never seen another visitor when I've been there and the staff seems to think I'm there often. Once a month, maybe twice? yet compared to the rest of families who come-NEVER-it's often.
So I was leaning into her and saying goodbye and I just started sobbing. I don't do his. Um. Ever. And her play partner I described earlier, also her personal confidant (Although she confides babbling nonsense) ran over and said, "Oh, honey, don't cry," at which point she began crying and hugging us both. I couldn't stop for just a few minutes. My mom wanted, as always, to be a part of it but didn't really understand what the sadness was about. I said a few times "I miss you." the nurse aid was telling was telling me " I love you almost as much as I love her." and told me they sometimes dance together.
Now listen here.
I have been in a few fabulous senior facilities that cost as much as Parochial college tuition and as lovely as their decor may be, I don't know that you could find that kind of love and loyalty. It's something. As much as she loved both of us, she had to ask me my name to write me down on her prayer list. Then she told me to drive carefully. The alarm went off as I left because my mom's ankle bracelet is super sensitive.

Sunday, September 25, 2011

Sad-ass Sunday

        So this deep blue funk I'm in is palpable. It's been building since I cleared out my mom's storage unit in her condo that, after a year on the market, finally sold for some ridiculously low price. (Which means there's a chance, once the numerous creditors and former adult community are paid back, she can get into a nicer place, in or nearer Spokane.) I had to get her keys to the guardian so I did a last quick lookover at the boxes in there. I was going to take the antique curio cabinet that she loved but it was awkward and big and difficult to get in my minivan and she probably wouldn't remember that she cared about it anymore.  I took the childhood photos and the nice pillows and I left the sewing machine, bike rack, Christmas stuff.. just most of half a storage unit there for the guardian to deal with.
        I also took a small box with two vibrators in it; they are sheathed in these awful hand-knitted slippers that my grandparents gave her for Christmas in the early 2000's. They were created by some ladies from the Arlee Senior Center. The dichotomy of those objects is just too silly, and her lack of desire to masturbate so incredibly absent, given her neurological status; the whole thing is just so weirdly private I can't touch them, much less throw them away. They were the expensive ones I pressured her to buy at my friend's Passion Party six years ago.
       In other disjointed emotionally upheaving news, we're moving everything out of two floors (we have a 4-level split) in our house so we can get new carpet so I've been in hyper-mess overwhelm (paired with suppressed sadness) and ADD-sidetracking every two minutes. There are boxes of mom's stuff to give away, mom's stuff to keep (photos of my kids and my wedding, mostly) boxes of photos and curios to go to my dad, a few boxes of things she might want to have should she ever have her own room again. Six boxes of our own shit to donate.
       I tried on my mom's super nice black wool long coat a few minutes ago out in the garage (where all our furniture is) It's too small for me and I got sad about the leather gloves inside the pockets. Why? She doesn't go outside of her nursing home, much less dressed up, so she doesn't really need the gloves, or the coat, and there was a list in the pocket, too:
garbage liners
milk
cereal
laundry soap
from back when she still was trying to live independently and thought she'd remember to look in her pocket for the list.
      As I was moving a box of ceramic miniatures (that I had on a little display cubicle shelf in my childhood room) I stopped to show them all to Isabella (my husband was in the middle of carrying furniture that I think I was supposed to be clearing off, or helping him move or something) I gave her a tiny crystal perfume bottle with an emerald topper that my mom has kept for more than 50 years. I told her it was very special and to put it up on her tiny shelf in her room. Half an hour later, she came in to tell me Sophia had thrown it and it broke all over the driveway. I cried because it was actually an heirloom and I was stupid to have given it to a six-year-old and I knew Sophia was just pissed because I'd given it to Isabella and not her. And my memories of my mom and who she used to be and what she used to determine was worth saving and reasons she did are just that fragile. Throw+crash= .43 seconds.
So maybe I'm a little less sad now that I wrote this down but I also have a headache. I will go start dinner. And by that I mean heat up the oven because Mike went to get Papa Murphy's.

Wednesday, August 10, 2011

Fricking Mama Cass

                 The thing about me and processing this whole "my mom is kind of a zombie now" thing is this: I can be all cerebral about it and learn about the 5-7 stages and consider where she is in them; two or three times a day I get scared because I can't remember something like Dan Marino's name-today I couldn't remember Foghorn Leghorn- And I mostly glide along enjoying the gifts of this life                   I've built with my beautiful family, but always with a nagging presence..a gentle whispy cloud.. of grief.
               Then I'm just working out at the YMCA and using my daughter's pink MP3 player because I didn't bring my own Ipod, and there's these songs my dad put on it and suddenly I'm crying on the elliptical listening to Mama Cass sing "Dream a Little Dream of Me."
And once I start grieving, I have to switch gears quick, because I can't just lay down and sob..especially at the YMCA.
               It happened dancing at this bar with my friends a few months ago, too. There was bad jazzy blues and people dancing like they used to at the Top Hat in Missoula and I thought about how I had to go to Blues Festivals with my mom there. She LOVED jazz and blues, and I really didn't..but that entire genre for me is painful now. I mean, even more so. It represents to me how she used to be when she had preferences and passion and brushed her teeth and knew who I was and it's...a lot.

Sunday, August 7, 2011

record of demise

I'm always waiting for it..the vacant stare that lets me know my mom doesn't get who I am anymore. I think she'll always be glad to see me. I always look pretty when I go because it feels less shitty, plus that's how she would recognize me. But the delay between the first blank stare and a glint of recognition is getting longer..she still relates to me as the person who's going to take her away..and asks me to. She starts to discuss a disjointed escape plan, so I just redirect her to her juice.
Today we inadvertently went at mealtime, so we just stood next to her at the dining room/activity room, took her on a walk around the institutional grounds for ten minutes outside then brought her back. She told me she hated the olive colored velour sweats se was wearing. It was laundry day, so those were loaners, I suspect. She seemed to be in the lady diaper again, so her own pants could be too tight. Her weight fluctuates dramatically both because of the pull-up bulk and she eats in erratic patterns.
But anyway, I'm familiar to her..she knows she's glad to see us..but it's just so cloudy. She didn't talk about me being her daughter today,..and didn't say anything about the kids or their names..I know some visits are more lucid than others, but it's an hour drive so a 20 minute visit seems? I'm not sure. What we can all handle..
It is, in spite of the wonderful staff of nurses..ok, a few wonderful and the rest pretty good,,the saddest place I've been in my adult life. Perhaps even more sad than the half-way house with the psychotic street people. Different sad. I can't believe she could have been in Clare Bridge a few years ago if different choices had been made. That place is Buckingham Palace compared to where she is. sigh. It doesn't make me happier writing about it..but it does provide an insightful record of demise. So, that's something.

You got a prize!

I meant to write about the last time we went to see mom. It was a few weeks ago on/near her birthday and we brought white coconut cake. Selfishly, but also for her, I make my children come. It's more pleasant and normal for me, and can go much more quickly when they start running around. Yeah, they hate it there, but she seems to enjoy our visits more when their little faces are there..it's eerie though; the people there are so ill or decrepit they have so little humanity left; it takes everything to move their limbs..their ability to find joy in small children the way other old people do.. ANYWAY, we were opening my mom's gifts (Buying gifts for her was dismal. Knowing that she needs nothing because she doesn't do anything or go anywhere. Got her a cotton nightgown/dress and slippers) she was chewing on a ginger candy that she really enjoys (the ones you can get in the bulk section) However, one of the side effects of not having brushed her teeth for the past 6 months is that (she not only has killer gingivitis) her teeth are weak. Anyway, the candy pulled off one of her crowns. It was half white and half silver..like it had already been mended cheaply. Hell for all I know, it was the $1500 root canal. When she pulled the crown out of her mouth, still trapped in the ginger chew, Bella saw the silver glint and said excitedly, "Oh, grandma, you got a prize!"

Saturday, June 4, 2011

Misplaced Grief

My grandpa died yesterday. My mom's dad. I don't know quite how to tell her. I don't know if she'll be able to conceptualize it, or keep forgetting and need to be reminded, or not need to be reminded..if she already thinks he's dead? Will she be casual about it, or cry? And for how long before she forgets why? I called her guardian about what to do in these situations, but she hasn't called me back. Do I try and take her to the funeral? Would I take off her ankle collar that sets off an alarm when she leaves her skilled nursing facility?
I have cried a few times since I found out, not because I grieve the loss of "my grandpa," who I haven't really known for about 30 years, but because I feel sad for my grandma who has been married to him for about 70 years..She also has Alzheimer's (has for about 20 years-)she will likely go in and out of knowing that Earl is dead and forgetting where he is; the people at her nursing home will have to keep reminding her that he's passed away, or maybe they'll just tell her he'll be right back in a  few minutes. Or that he's still in the War. That's their business. But I've decided that my business is coming up with some really magnanimous thoughts to say at his still-to-be-created funeral. I don't know who'll organize it; my mom's two brothers might be a part of it...
I've been OK with not having involved grandparents..you don't really need them, right They let me in their camper a few times when I was young...My bigger issue in life has been not really having a very strong mom. And now my issue is having a mentally incapacitated mom; one who I have to explain has lost her father. He's almost died a few times~he had two kinds of cancer after all. I don't know how old he was. 93? His obit isn't in the online version of the Missoulian, but a friend of my mom's called to tell me she'd seen it in the print version.
About 5 years ago my mom made a lovely photo scrapbook album about her family with old photos she had to steal from my grandparents because they wouldn't let her have the photos or the negatives. On one of the pages she had this great photo of her on her dad's shoulders in a lake. She's about 3 to 5?Underneath the photo is a caption taken from a great poem by Susan Ariel Kennedy (SARK) "There was always love--large, raw and imperfect."

I think I'll read this at the funeral. I don't have anything else to talk about. He took me fishing a few times; we used corn, and it really worked.


How To Forgive Your Father

I am not Daddy's Little Girl. I'm a mountain lion in a skirt, with prayers in my heart. 
When I asked my dad what he wanted in a "dream daughter" 
he said "I wanted a daughter who would wear an apron and make soup from a ham bone." 
I'm a vegetarian who doesn't cook. 
My "fantasy father" would be super literary and work at home. 
My dad was a travelling salesman who struggled with spelling. 
When I was 4, my dad's head was as big as the world! 
I rode on his shoulders, clasping his forehead with my tiny hands 
and laughing as we ran through the grass. 
Together we were taller than God. 
My dad held my red Schwinn bike as I balanced my first solo trip, 
and ran alongside before letting me go to pedal into a new world. 
My dad always got mad at dinner and I thought it was because of me 
so I sat up straight and tried to do it all perfect and he still yelled. 
His dad got mad at dinner too. 
I finally learned that when I could show softness, my dad could show support. 
I wish I'd had more time to be with him. 
I remember whisker rubs and "serious talks" and standing on his feet to dance around the kitchen. 
He tied my ice skates double-tight, 
and there was always love--large and raw and imperfect. 
When I prowl through all the prayers in my heart, and in certain photographs in a special kind of light, 
I can see my dad's face inside my own, saying "stick with me, kid!" 
I know now that he loves me in his own language--that the past stuff is just fog on the mirror
--that the little girl inside never stopped loving him. 
She feels the love and forgives the pain. 
HEY, DAD! I'LL LOVE YOU FOREVER, YOU KNOW.

-S A R K

Thursday, May 12, 2011

Resistance

          It's hard to go back to being on my own, with respect to dealing with mom. I don't want to go back to that place without Chris. That Scrabble guy was only our friend because when Chris and I are together we..but especially him, can create fun and community in the most ridiculous situations (maybe his gift comes from years of being heckled in bars as a stand up comic. What could be more humbling? Oh, wait, subbing in the first grade with no lesson plans.) ANYWAY. The scrabble guy is just a big stranger now, and my mom is just the lost lady who walks with her right shoulder down and is happy to see me, but then goes away to pace the west hallway.
         When Chris was here we were a family; broken, tragic, funny, uncomfortably comfortable. Chris and I survived every other family situation like this together: Christmases at the O'Connors where we received a set of sheets (me) and a light-up pen (him), or whatever was from Kmart dollar days. Awkward fighting and tension..we just giggled through it all in whispered tones. Chris would find something..a crooked googly eye on a hand-made felt Christmas ornament~ and we'd laugh until we almost peed our pants. And that was when I HAD bladder control. We did the same thing on those drives to the nursing home last week. After we had to decide about whether or not to go with the DNR order, we talked about taking mom for a walk by the river..
       "Oh, no, oh, mommy, watch out, you've fallen in the river face-first. Oh, dear..giggle "Are we going to go to Hell for saying this stuff and laughing?" "No, wait until you get there. That place is close enough." But with him, it wasn't, it was just how our goofy family looks now. And I don't want to go without some support. What a wuss. I wish I felt differently.
        I think I'm also mourning not having Chris with me. In general ,but also with regard to grappling with this AD thing. I didn't really realize how much more freeing it was to go through this with my other half. SIGH. And I am also resentful;, because he gets to be the Disneyland son (literally, he lives by Disneyland) and I am NOT that, mostly because I do still live here, but also because I'm the one who PUT her there. At least she thinks that in moments of lucidity.
        I will get off my pity potty (potty...man I wish she still went potty) and go, soon. Really.

Friday, May 6, 2011

Scrabble and the Mangy Mascot

Chris, Mom and I in 1975
         My little brother has been visiting from Los Angeles for the last few days to spend time with our mom. The first time we talked about him coming here to "say goodbye" was gut-wrenching. It was three weeks ago, when mom first started to lose her ability to monitor her own number ones and number twos, wasn't eating without assistance, etc. We actually thought she was doing the Alzheimer's rapid -body function-shutdown.  He couldn't leave work at that time (he co-hosts a TV show in LA and just couldn't. Anyway, so he's here now.) I had this conversation with him, it's worth mentioning, in the middle of McDonald's playland. My daughters had a little friend for a playdate, so they were screeching around on the play structure and I was sobbing; the maniacal, seemingly therapeutic consumption of french fries wasn't helping curb my grief. Got a text from a friend asking how I was doing; texted back "How soon can you get to McDonald's? Having a breakdown in playland." She arrived ten minutes later)
        Turns out our mom's not dying; not quickly, anyway, and in fact, may stay in this limbo for a while.
Her guardian called on our way to see her on Tuesday..she was asking for the Advanced Directive for her file..the bright green sheet that nurses, doctors and EMT's know as the "pulse form," or the "DNR."My brother didn't know what she was asking, so said "My God, let me visit her first."
       No extraordinary measures.
       Here are the ordinary measures: they feed her medication, help her get dressed, make sure she eats. (She gets to choose from a daily menu. Good thing she forgot she was vegetarian. Limited choices.) She is combative about showering, which I know from my failed attempts to force her. What with the decimation of Medicaid and Medicare, the addition of bathtubs, particularly in skilled nursing homes, doesn't seem likely.. so spot showers and sponge baths it is. She loves having her hair washed, and still has fabulous hair.
       We were scared my mom might not recognize Chris. He claims she didn't for the first few minutes until she heard his voice. She knew immediately that it was her funny son, and so she was trying so hard to be funny. It was really quite charming. She laughed hard and readily. (She doesn't brush her teeth anymore) and tried to make little jokes. She rallied the first day we were there. It was a short visit, and not as bad, but still kind of worse than he had planned. Because it was in person.
        When Alex and I had visited her on Easter, mom was using the bathroom by herself, but since being put on anti-anxiety meds to get her to stop pacing, and chill her out during dressing and undressing  (It reportedly took three nurses half an hour to get her pajamas on a few nights ago.) she's lost the interest or ability to go to the bathroom on her own, so it's back to the pull-ups. Also, she now walks with her right shoulder hunched down. They say its a side effect of the medication (that and constipation) Chris says she looks like an extra in the "Thriller" video. True, but with less rhythm. Inappropriate? Sure, but you try going through this without gallows humor. Speaking of which...
We've dubbed this mangy cat "The Mascot. " I don't remember its name. It needs a bath, some grooming, a trip to the dentist, and some love. Get in line, kitty. 
.
       On the second day of visiting, we decided we needed photos of the mascot.I don't remember the cat's name, and my promised adherence to HIPAA precludes me from saying its name anyway, even though it's not a patient. Yet very well could be. We've dubbed the ancient long-haired, tiny-framed kitty the official Mascot. It carries itself as gingerly as the patients (who are not confined to wheelchairs.) Like most of the residents, it isn't able to clean, or groom (or be cleaned, or get groomed)   It skulks from room to room, grabbing a nap on random pillows. It's darling in a super pathetic way. I want to hold it, but I can only manage to tap it gently on the head. My brother wiped its goopy eyes, which I thought was rather generous.

I tried to get some annuals for my mom to plant in this box: She really wanted to, but the little town in which she resides didn't have any flowers. Had ordered them, but didn't have them.

It looks kind of pleasant here; and it is, for what it is. A place for people who have no where else to be; whose level of care is too much for anyone else to grapple with..especially running their own families. Everyone there needs 24 hour care. Few are ambulatory. Most of them smoke, just to have something to do. My mom is like a caged animal, pacing and pacing. When we walked out to the "back yard," she actually shook on the locked gate. We decided, after finding out there were no flowers to plant in the whole town, that we would just play Scrabble.
         Word-building. Social. We talked a large kindly man, who appeared to be a former boxer, since he used a fighting gesture to be playful, which is probably where he was brain-damaged. We're just creating that theory, we don't really want to know the truth. Former Heavyweight champion. He put an "L" tile on the table next to the Scrabble board. Just the "L." Chris looked over and saw "ost" on his wooden letter holding ledge. "May I make a suggestion?" he asked. And he added the OST onto the L. The champ rose his arms up and said "Yea!" in victory. My mom left a few times..wasn't really into it. We made up our own rules and put words wherever we wanted. A nurse brought my brother a bag of chips. I had a diet Pepsi. It was 15 minutes of almost fun.
        When we dropped mom off at a dinner table to eat (with 6 men..turns out that scared her. It was the closest table next to the shelves that house the board games) Chris walked over to shake the Scrabble player's hand and joked about winning a hundred dollars off him. Heh, heh.
      A Vet with one leg wheeled over and confronted Chris:
      "Did you really take a hundred dollars from him? That's a lot of money!? Did he take your hundred dollars?" The guy nodded. Shit. Vet was ready to kick Chris's shins in. Chris had to explain the art of sarcasm.
Chris and mom, on the outside walkabout. Not pictured: The smoking shed
       As much as we tried to make light and be friendly and hold my mom's hand and put our arms around her, it was just..REALLY SAD. We were sad. Quiet on the way home. Chris described how mom was talking about being uncomfortable on her bottom and we thought in retrospect she might have diaper rash..then we felt worse. But when he called the staff after we had a few drinks with dinner (after me and my daughters fit in a Girl Scout Mother's Day ice cream social from 6:40-7:30. Of course I was late. We were playing Scrabble with a brain-damaged former heavyweight champion. ) They were all over it. "She's changed, and in bed," they told us. For that moment, on that day, we did what we could. And beyond. But it will never feel like enough.

Wednesday, April 20, 2011

You're a handsome devil; what's your name?

     My mom's new "home" is about a one hour and 10 minute drive .. I was really hoping the place wouldn't be as bad as I pictured, but it was. Actually worse. The strongest smell of piss was in my mom's bedroom. But it's actually just a hospital room split I to three spaces. She had brought a few wooden craft projects from her creative time at the holding place, and they were in a paper plate on the top shelf of the industrial hospital-ish nightstand. Plastic Easter eggs with googly eyes. Are you kidding me? And a little painted bird house. She only had the patience and follow through to do one side-or maybe someone painted it for her. Who knows, I threw them all away to put her real belongings; things she's had for 10-40 years. In the two bottom drawers I put underwear and jeans, a few shirts and the rest of the clothes that would fit in the 26 inch wide closet I just hung up. But it seems as though she may not be using her cute jeans anymore,
what with the pull-on diaper...incontinence pad undies.

     I found her in the dining room/ cafeteria/multipurpose room being prodded by a capable, confident male nurse to eat her broccoli. (seriously, begging a diaper
clad person to eat their broccoli? Familiar and yet...) The first thing she said when she saw me was "How did I end up here?" so I of course explained (because even though I've read the guide books about dealing with people with Alzheimer's that tell me to just say generic things and agree and not argue~path of least resistance~ I don't like lying or being condescending) "Well you ran out of money, and the previous guardian mismanaged your bills and finances; then there was the APS involvement, which actually I may have had something...Oh I don t know, a van?"

     When Mike and the girls walked in her face lit up but she looked at Mike and said something like "Oh, are we going dancing?" at which point I turned to him and quoted one of my favorite, albeit less celebrated lines from John Cusack's Grosse Pointe Blank: (when his mom looks at him after talking to him for several minutes and says )"You're a handsome devil; what's your name?"
     My mom got up from her broccoli to go to the bathroom and I went with her, encouraged that she may retraining herself to use a toilet. But she had a soaked diaper on for panties which, after she was done wiping, just went right ahead and pulled back on. (STILL...the fact that she was able to sense that she needed to go means that last week's incontinence is perhaps brought on by freaking out over the abrupt change of environment and not the process of system shutdown that happens in late stage Alzheimers...) The smell was pungent; I looked to my right and noticed a clean diaper and thought, hmm, I should put one of these on here, but then I'm not really trained..Is that her size? I wondered..I thought of my daughter Sophia when she sometimes still wets her little jammies if she drinks too much before bed...her sleepy half-naked little body in the dark as she digs fresh panties out of her drawer to change. I didn't do anything for my mom because this was way different and there was no biological imperative to do so. I did help her wash her hands, but it's not like I felt magnanimous about it.
     After putting some of her things away and while she was walking around (which she does endlessly, at all hours..and her shuffle steps have become wider; seemingly more confident), she asked me: "Why did you put me here?" (Yea! She knows me still) Fair question, except I of course didn't. I actually found her the best place in a three-state
area to live last July but when we were ready to move her, she took a tour, and was lucid enough to tell me and my brother "I would rather slash my wrists than live here." It seemed like a pretty bold statement of preference. She wandered away. 

     My husband kept trying to coax her back to the family room (Mike was, by the way, in work mode, having seen his share of nursing homes as a firefighter/EMT. He took it all in stride; was professional, cordial, sweet, placating) to watch TV with her granddaughters , a kindly-though-gruff older man and his three-legged beagle, Scooter. (I am completely serious about the name "Scooter." I am not creative writing).
     I showed the social services liaison where I'd placed my mom's belongings including mismatched jewelry and a beautiful glass egg and framed pictures and scrapbook photo albums, should anyone like to go through them with her. 
     On the cork board assigned to her section of the  room, I push-pinned some photos of her looking beautiful in various outside locations-mostly Montana-including this cool waterfall place I took her when I worked in Yellowstone Park. She's sitting in
the waterfall, looking backwards and smiling and so young; I realized she was 42 in the photo. There were a few more photos with she and I, or Chris and I. All from the 1980's. 

     I showed whoever walked-or rolled by-which is incidentally how I figured out one of her roommates doesn't talk.
    "Look how young and pretty my mom is here." 
    "She still is young and pretty," one of her new friends said.
    "Yeah," I agreed, "She is."

     The dining room/ cafeteria/multipurpose room also serves as a makeshift chapel, and when I went to find my mom, she was sitting at one of the tables with her eyes closed in prayer. I started to walk toward her to say goodbye, but I didn't want to ruin her moment with God. Plus, she wouldn't know we were there, much less that we hadn't said goodbye. I think I at least helped her to feel a little more "at home."'

Monday, April 18, 2011

"She usually wears her hair long"

So today's the day my mom was moved to her new care facility~or rather, home. Since she became incontinent last week, the list of lock down "skilled nursing" places who'll take her got very small. Oh, and that take Medicaid? Small. Tried to Google her care center, but with taking care of people who can't function and relying on all the sweet public dollars Whitman County generates, there doesn't appear to be a dedicated IT person. No website. Reading reviews was mistake. But that's what families do. Google the diagnosis, treatments, physiology, cures (none in this case)...
In doing her laundry last night I wondered as I pulled out her pairs of underwear and big robe...do incontinent people get to put on underwear ? Will they try and retrain her to go little and big? (the social services liaison's answer today: That might come back once she gets used to us.)
When my kids were potty training they would regress if we were traveling, or they got sick . But then , they had lots of synapses firing; ready to re-learn or learn anew. Her synapses are done firing. What about a robe? Will she be wearing it again? Likely not if she's got people getting her dressed. This is some f-ed up line of pondering, for sure.
Last night the kids and I went for visiting hour on her last night at the local mental holding center. She had stuff in her teeth, recognized the children but scuffled around in small steps and five times got up from the industrial table (that serves as a craft and dinner table, as well as a hospitality table) and got up to check out those damn Easter egg cutouts. My daughters had been counting them ( then got scolded for hitting the wall because of the loud sound; never know what will activate the schizophrenics) Anyway, she just followed them with her finger. She also scuffled, which is apparently common among dementia patients. The scuffling was further complicated by what appeared to be a grownup diaper under her sweatsuit. She didn't know the girls' names, but here's the beauty: in the car I asked my daughters (I'd asked how the visit was for Alex already. His answer: 'Absolute Hell.') : "Well, what did you notice about grandma? Is she very different than the last time you saw her?"Yeah, she had a pony in her hair. She usually wears her hair long."

Wednesday, April 13, 2011

Where is Allen Funt, and WHO painted that google-eyed bunny?

           I was sitting with my mom in the visiting room (at the lockdown facility for high-risk people in various disturbed states) and she needed to use the restroom. Actually, I had said something like "yes, but you don't have a home yet," her eyes teared up, then she immediately forgot why and said "I have to go to the bathroom SO bad."
          So, while she left the room and I helped myself to some cold water in a Styrofoam cup, I took a look around the room that someone had attempted to "decorate" for the motley crew of temporary residents and their frazzled friends and loved ones. But the placement of the pre-fab patterned egg shapes in a horizontal, not straight but certainly not playfully lopsided line across 3 of the 4 walls was so...sad. "Look, everyone, it's EASTER TIME!" Somehow, it was just as sad as the sweatsuits. 
         And the painted brown Easter bunny taped on the wall? Was it made by an adult or a child? Was it supposed to look like a chocolate bunny? It had googly eyes and looked several years old, but well-kept. 
         Why does the woman sitting at the table across from our table have bitter beer face? 
         For survival reasons, it would be nice to see the humor in this...my mom tried to, too, after joining me again in the visiting room with the egg shapes and ice water. She was of course surprised to see me. 
         She wanted to make fun of the obese dude in the orange shirt, but all she could come up with was "he looks like a bee." Still, no matter to what extent she knows it's me, her daughter, she knew being funny was something we do, and tried. She kept telling me "you're so pretty." I just held her hand.
         After the short long visit, I asked the nurse if she was on some kind of anti-psychotic medication, because she was so listless and slow and shaky and her eyes appeared dilated, but the nurse told me she hadn't had a dose since two mornings previously. 
         I was told she's been like that the whole time, and the only time she showed any animation was when she saw me. She was holding a newspaper and looked surprised and happy, then dropped the newspaper she was holding to be dramatic..a teeny bit of her..
         There is no furniture besides chairs and a table, no personal effects allowed ..they have lot of suicidal people who can't be trusted to not use personal belongings in self-destructive ways. 
In the lobby are posters of "schizophrenia: the warning signs," and resources for the mentally ill. 
        When I left, my mom tried to go with me, setting off the alarm, but I walked her back in. She told me, "OK, so maybe see you tomorrow. You can call me, or no, I'll call you."
She doesn't know how to use a phone any more. 
She does have a "discharge manager" which is encouraging; she WILL be discharged, she just needs a place to live in a dementia unit: Locked down, and nice, and that will take medicaid. There's a team, and a few personal friends trying to find a place.
       I keep hearing that Alzheimer's is more painful on the family than on the patient. I'd say.

Things I think when I can't sleep...yes, about my mom

From late night entries on my iPod.

March 2011

Listening to sappy music after sort of sleeping...woke up sweaty enough to have soaked the bedding & jammies for a third time. How many more days will I have this fever?
The point is, I was just listening to Boz Scaggs on Pandora radio and thought of my mom listening...Our album was the one where he's smoking a cigarette laying on a lady's leg. Boz thought he was hot stuff. Given where things are now, I can almost take all the old pain of seeing my mom in her blue robe, listening to jazz albums, or Boz Scaggs, on headphones and drinking glass after glass of Franzia (Chris called them "wine pillows") I get the music and trying to wind down. But I do that by talking to my husband, and then being with my kids. 
I mean, I now get the "going away." (me and Facebook, blogger, You Tube, Hulu, take your pick!)  And, I understand the headphones because we all made fun of her bad jazz,  but the wine made her go all the way away and I just wanted her to talk to me. I see now, and get now-literally- she had nothing to say. She didn't want to be asked anything because she didn't have the confidence to answer

August 16, 2010

Can't sleep at Barbara's cabin in spite of having taken a Lunesta.  
It's  5 and I've been up since 4. So having posted upcoming events on my calendar, now I'm writing about how my best present: Having my mom remember my birthday. I don't want to know if one of her caregivers just took her and threw a few items in  cart. I really think she picked out the gifts because they looked like me and like what she recalls goes with my house. I will continue to view it as any other little miracle: believe it is and don't research why it isn't. (Which is why I believed in Santa until Dave Bennett told me at his 50 th birthday--I was 19, I think.)
"Yes Virginia, your mom remembered your birthday." 
I figure this and the video of her dancing disco with Sophia should be good for 6 months of easy time in independent living.  Jesus. It's freezing in this guest cabin!!! And now the stupid sun is already coming up and my girls are rolling all over with their sleeping bags moderately covering their squirming little bodies. Thank God we're not in a wet fricking tent.


July 2010

This is a few days after my moms birthday..On Monday, two days before her actual 64th birthday, Chris and I decided not to move mom to Clare Bridge. 
That was before her Birthday lunch.
I told her to put on flip flops. But that involved dealing with her feet.  Oh dear GOD it wasn't just the dried flaky skin but a yellowish coating & what appeared to be athletes foot but  
was just weird thick crusty film. 
So...she doesn't wash. And I am starting to see what the pros are basing their suggestions on. I was already late to take her to Lunch and I had wanted to go shopping at Nordstrom (that's what normal moms and daughters do on birthdays, right?) so I got a pan of soapy water and a washcloth and took deep mouth breaths and drew on my deepest reservoir of compassion; the one I have when my kids are sick in the middle of the night and also on gratitude that I don't have to do this kind of thing for a living. She is family so it's not as gross as a random foot. Also, while there I cut and painted her toenails. (I will be going to Heaven.)Lunch was good, though. Rock City Grill. She had iced tea, I had a martini. 

June 2010

Fucking insomnia. 
Here's a thing: How can I still be popping zits when I have to also pluck gray chin hairs and dye my hair every 2 weeks and hand my mom over to “the state” I say it this way to be dramatic but I do feel this guilt if I were just more compassionate or maybe Japanese I wouldn't have a choice . But there is something about our  
society dropping off it's mentally ill old people..Mike doesn't  
understand how I could be feeling sad about letting go if I never had her I the first place ..unrequited love maybe? 
Damn this gaping hole! Why can't I be OK with what was and is? Shoulda coulda woulda my dad would say back in the 1970's. Got it from Laugh In or Saturday Night Live, I think? 
It's because now I know that mothering is NOT a basic function. It's an up in the morning, late at  night pride swallowing siege yes I'm misquoting Jerry Macguire. 
Must sleep. Therapy and court date (to assign a guardian)tomorrow. The temptation to drink is high. Too bad that's not something my mom and I do. Now we don't really do that much at all . She pays someone to put together a puzzle. 
Touring Clare Bridge with the family was helpful only to see it won't be a place they'll want to be..even to a greater degree than where she lives now. But as old as those residents were, and hanging out, waiting for the next meal-of course thinking that they hadn't yet eaten-they did remind me of mom. At least people are on the same wave length there. Alex said he didn't like grouchy ladies snapping at Bella and that it's "too far away." I am just not doing anything..but I'm not sure thats  
OK yet.




Sunday, April 10, 2011

Limbo in gray pajamas

          Today is the day my mom goes to court for two things: and in reality, she's not going anywhere. She's wearing gray pajamas in a lock down facility. More on that in a moment, but first the "hearings:" One is to decide if she should be in her temporary care facility for another 72 hours. Since there is no where else for her to go yet, this seems logical. Second, there is a hearing to appoint a new guardian, since the other one did a poor job of monitoring my mom's demise, which culminated in a most dramatic way as we were on a short "spring break" at the end of last week:
          Even for my mom; never a stranger to self-generated (whether consciously, or in the past 5 years, unconsciously) chaos, has outdone herself. While we were away in Montana for a two day trip to see grandpa and grandma, the supervisor of APS (Adult Protective Services) finally visited with my mom, who, after being abruptly taken off three Alzheimer's drugs and one anti-anxiety drug three months ago, is being (understandably) more crazy: Talking to people who aren't there (and telling them to go away) pulling the fire alarm, then standing beneath it with her ears plugged.
Also, she's had apparently been night-walking and sleeping on couches. And lwalking away from the huge building down the street with no coat. She is registered with Safe Return, but never wears her medical alert jewelry. She forgets!
         So, for an undisclosed amount of time, (72 more hours, or 2 weeks??)  she is in a locked mental facility until we find a dementia unit. I'll hopefully have a new guardian today (come on, court system??) to work on her behalf, and after rummaging through everything in her apartment, and the storage unit in her unsold condo (anyone want a Brown's Addition 2-bedroom condo with a view of Sunset Hill for $115,000???) I have dozens of photos, preschool drawings, report cards and newspaper clippings regarding me, my brother, my children, and love letter from when my dad was in the Army. The autographed Monte Dolack posters are in storage or in my Tahoe.
         I found my (1976) "Bluebird" pin in a random box, so I put it on my jacket. I got it when I was seven. My troop leaders were my first exposure to an openly gay lesbian couple. I learned to tie-die, my dad got some tips on fixing old cars, and the only Camp Fire promise I remember is the one they added: "To learn about girls and how strong we are."
         What a powerfully sad and funny surge of lots of memories I dug up in her respective storage facilities. And WHAT to do with the dozens of jazz LP's from the 1970's collection ??

Haven't brought my self to visit the psych ward (which is not in a hospital, and euphemistically referred to as a crisis stabilization service.) The grey standard pajamas are just a little too much to deal with right now. I may change my mind by the visiting hour: 7-8 pm. Wow.

Back when there were still marbles rolling around





This was written in January. My, how things change in 3 months. Call it a record of regression. Isn't that the opposite of progression?

          I had a long conversation with (my mom's caregiver) Maria, last night. We both are concerned about the push to get my mom into a Dementia care unit before she's showing the requisite traits that suggest this is the most prudent move for her. 
          In my dealing with her, my mom has been completely normal, except or having no short -term memory. We went shopping the other day, and she had fun; I had to keep reminding her to finish pulling on and off her pants in the middle of what we were doing, but she is still self sufficient at both dressing and grooming. I have asked Maria to document her daily (or nearly daily) experience with her. Maria says she believes it would be "horrible" to move her from a place that she has a degree of Independence and freedom to a dementia unit. I concur. 
          Yes, she needs someone around to redirect and remind, throughout the day, but it has taken her nearly a year to get used to where she lives, and she seems happy there. Comfortable. I can have Dr. Greeley make his recommendation. His theory is to keep someone where they are most happy. I have no concerns about her walking off from where she is now, but moving to a dementia unit is another story; especially with the level of self care and awareness. (she still has her same personality and sense of humor) seems ridiculous if it is just to follow the protocol of medicaid transition. 
          It will still cost the government less to pay for someone to come and drop in on her throughout the day than to put her in a full-care unit for which she is neither mentally or physically prepared or needing at his point. I understand that she seen as a burden to some of the residents of Park Place, but that should not be a guiding factor in forcing this transition.


Saturday, March 26, 2011

"You have a great memory!"

The other day I ran into a man whose wife and I had bonded at the 2008 presidential caucus. We both had moms (hers passed away)who were both alcoholic and had Alzheimer's. And we were both named Lisa. So I remembered a couple of things about her husband (like he was teacher,  etc.)and he was impressed--since I don't think he remembered my name, even though it's the same as his wife's--he said "Wow, you have a great memory." And I said, "YES! I do.." and thought, "but for how long?"
See, my mom's getting bad. Really bad. she can't finish sentences. Pretty sure now that it's Early Onset, because the sudden quick demise matches the pattern of early onset, and I've been watching Grey's Anatomy and learning alot about Alzheimer's from Derek's trial. Ha. It's been making me cry pretty hard though. Actually, I've learned nothing that I didn't already know from my own research, but as an aside to my aside, I am pretty sure either the shows creator r main writers have a mom with Alzheimer's because even with the huge forecasted growth in people with Alzheimer's, no one who WASNT dealing directly with it would think it was good TV. I can tell you it's not good party conversation, or good stand up material both me and my brother have attempted both
ANYWAY
my mom has been kicked out of her retirement community. Or, rather, been given a notice to vacate for not paying rent for 3 months. I've fired her guardian for being negligent (for example she hasn't told me that my mom was-for all intents and purposes- kicked out of her place, not has she purchased her medication for two months) but there's a few delays while another guardian takes over her finances and the sale of her condo, etc., and getting her into a new place that can monitor her. Hopefully a group home, because none of us, especially my mom (even though she is scared of a shower and it takes her 20 minutes to put on a shoe) wants to go to a dementia unit. Not yet.
So, back to me.
Like we're ever not on me, but I'm calculating how many good years I have left. If it is EO (Early Onset) Alzheimers, then its highly genetic, like 50% chance. So I thought about going back and getting my doctorate, but then I think, well, that would be a waste if I took 2 more years to get another degree, build a business, then have only 10 years to work, and I've got o travel and grow old (for what? 3 years until I lose  it?) Twisted and dramatic, I know. But that's me. It's sort of like my friend's husband whose dad had a massive, lethal heart attack at 58 and figures he's got 5 years left himself, if genetics decide.
But it's the fiorst thing I think of when I wake up every day. Where the hell and what the hell is my mom, and what if this happens to me? And then I go be with my own children and put the thoughts aside. But there they are, aside...following me like...an unwanted obsession. SIGH.
I know, live in the now.
We went to see my mom tonight (to assuage my guilt and to say that I did it, and to see her...of course.) She was more coherent than at our last visit; laughing at Seinfeld, and enjoying the girls, even though they were running down the hallways threatening to knock over grumpy old people on walkers, and fighting.  She always wants to leave when we come, and tried to get into another black car the other day. I guess she thought it was hers. Another sigh. Enough of this, my own biological offspring need me now. Isabella is having a tantrum because Sophia got glitter glue on her blanket and I can't wash it in time for bed. I have to get Alex to take a shower. Its been nearly two days.

Wednesday, January 12, 2011

Caregivers Bill of Rights (for AD and other Dementia)

Got his today from the Marketing Director at the beautiful retirement community where my mom currently lives. What a lovely and confirming document! And of course it makes me feel guilty because I'm not the Caregiver, well, except I am for now, in that I'm IT. But you now what, most of our parents would HATE the idea of their children taking care of them, if they had the capacity to express it. Especially when they need more physical assistance. 
Actually, a woman from a support group said her dad told her "I hate you seeing me like this." It broke my heart and I of course said, then GET HELP!! said another way. "Put them somewhere!!" She's been caring for them for 13 years at her home and is completely under-qualified on lots of levels to do so anymore. Yikes. Anyway...




A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Dementia Dreams

SOOOOOOOO
Here's what I'm actually going through that I would NEVER discuss on Facebook:
My mom has advanced stage Alzheimers Disease, at age 64, and I know that she will be moving soon to the Dementia Care wing. (I have put the dream in Arial font, so as to distinguish it. This post is weird)
I had a dream last night that she was moving to a temporary other room until they could get a room for her in dementia care. (I don't know the exact status because I am not her caregiver..she is a ward of the state with a guardian who handles her "money"..she's out and will soon be on Medicaid, which will only pay for her room and board.)
So I had given her a baby..(we're back to the weird stress dream) one I had apparently given birth to.(.as if I can do that easily with my reproductive past and Mike's vasectomy. But you must suspend disbelief in weird dreams) She had all these antiques and and my kids and Mike were walking all over the building waiting for me to get done sorting which stuff went to charity, which to her place, which we were keeping. The antiques just kept coming, and she had 5 huge bronze Buddha statues, and the baby kept going somewhere else and I kept losing track of my purse and my kids were still hungry, it was after 9pm and I had to help get everything clear because the staff needed to redecorate the hallways. between her old and new room. I had taken two Lunesta and was stumbling around..there was some weird spaceship involved at some point. 
Now, Would I have different dreams if were more involved with her care? Probably not, my guilt at not wanting to be involved more in her care would just be transformed to more stress and anger and resentment. Yea, fun mommy!
And the dream was more real than surreal.  I am not her caregiver because I have three young kids who need me, and a husband who is my intellectual, physical partner, and who is not willing to live with me the way I am when I am with my mother: Annoyed, angry, scared, sad. She needs to be watched and guided and prodded to eat, get dressed (as do my kids, pretty much always) and find her way to her room. Since she ran out of money she doesn't have private caregivers designated to do that for her in her independent living apartment, but she does have someone who comes at 4:30, gets her dinner, makes sure she takes the meds she doesn't take because she forgets immediately what they're for (they're for depression and memory, and don't really improve either. She is otherwise physically healthy)
When she sort of understood that she needed to be in memory care she was open to it, but then she saw the people in there, who are of course, usually 20 years older than her and obviously wandering aimlessly. But she does the same thing, just quicker, because she's fit. She told my brother and I (this was the first time he was around for all this..he lives in LA) "I would rather die than live here."
Now, apparently, I could have just ignored that and had the process move forward but I told the guardian, STOP, we're not moving her, let her enjoy some more independence.
Here's where the guilt lies, and why I have dreams about her. I SHOULD feel at least compelled to go see her every day, or at least maybe twice a week, but I don't make myself go..I will always feel guilty about it while purposely getting myself engaged in some other sort of important or mundane task that then makes it anywhere from inconvenient to impossible to go see her. When I go with the kids, they get antsy and run around her tiny apartment;. they make her nervous because she thinks they'll get lost outside the room (because she does) and that people will get mad at her for making too much noise. So it's stressful. If I go see her myself, it's fine, but the time is limited because I always feel I Should go back home to be with my family. 
Even as a child, without going into a long tangent, my mom was just there, mostly. Mad, sad, confused; there. I wouldn't go to her with anything. Like a grumpy..Jesus I cant think of the woman in My Fair Lady..see I'm already getting it!!?? Eliza Dolittle. Good, I still have firing synapses.. I grew accustomed to her face. I was glad I had a mommy and didn't not have a mommy, but my dad was just the go-to parent. So I've always felt guilty I didn't like her more, or want to be around her more. 
You know how taking care of your own children makes you appreciate what your parents did for you, or makes a really glaring reality of how much they didn't? Well, so does being faced with taking care of your parents. Ahh, it's just icky. No way around the sad, or the scared. Or the guilt.

Winter Wusses

How the hell do you spell Wuss? Newsrooms get so excited about storms, because inevitably, there will be breaking news for the morning cutins--6 car pileup, one car blocking..semi's in ditch..you know..plus school closures, late bus routes..all the makings of a newgasm (that's what my editor and I used to call it from our sedate post production room as we were making promos and the news people were buzzing around  trying to get graphics spelled correctly) But really, it's not like we're Mississippi or some state that doesn't get snow. It snows here. We drive slowly. Our kids put on snow pants. We either allow extra time for travel, or, like me, are just late.
How fun, no one's reading this blog. I haven't told anyone. Read Zuckerman's story in the TIME magazine finally. He has 550,000,000 people on Facebook and I have no readers! Ha! That's why I like writing for a pre-existing publication which has at least hundreds of dedicated readers already. (which then, accordingly, earns me hundreds of dollars) I do not have the makings of a venture capitalist.

Saturday, January 8, 2011

Slow Set-Up

What the...? Why is this so tricky to set up? Am I on Gmail or blogger..I'm not sure. I am supposed to be doing something else..that's the theme of my life. As if I should be apologetic about "blogging" (sorry I still hate that word.) when my husband and son are playing Halo Reach for the 18th day in a row. I am perplexed by the technological challenge and the extreme personal nature of blogging. I have always reported or written columns publicly..with an exact framework and a word count. I think people would get sick of my stories, which may be part of my hesitancy about writing any memoirs. HA! Yet, I've been moved by others' blogs, so what the hell. I'll figure out how to set this baby up.

Thoughtful young me

Thoughtful young me

Seventies chicks

Seventies chicks
Me and my mom Lynn, 1973

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