Mom's Birthday

I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time.

~Jack London

Last year, going through my mom's things, I found a print that had hung on her wall for as long as I could remember. It was this quote, matted and framed. It reminds me of how she lived her life.

I still miss her every single day.

I had planned to post this on June 15, the anniversary of losing my mom. But somehow, it seems more a quote that celebrates her life, not mourns her death, so I'll post it on this, which would have been her 67th birthday.

Final Post

Picture collage put together by my uncle Forrest, for mom's funeral.
I've been thinking a bit about what to do with this blog...with mom's words, her stories, her hopes and fears. I'm the co-author of this blog, in that I helped her set it up way back when, and I've been able to maintain it during these last horrible months, during her decline.

I've decided to let it go. It makes no sense for me to post here, as this is the place for HER voice, HER stories, not mine. But I'll leave it up, as long as makes any sense whatsoever, because her stories are wonderful, her thoughts are wonderful, and if there's a chance someone new might come along and enjoy some of these posts, I know she would want that.

Because she truly LOVED this blog. Loved it with a passion. When my Uncle Forrest was trying to motivate her to get up and get better, he used this blog as a carrot. She saw that, and she agreed...this was the carrot that would work. Because her friends are here. Some of her dear friends from Juneau came here. Her friends from OO came here. And friends from blogging came here. So she loved it. You cannot know how much your love and support have meant to her, and to me and Richard, during this sad, difficult time. It has meant everything.

The more I process all of this, the more I think, that it wasn't so much a matter of depression and lack of motivation, but a matter of her truly not being able to get up and move, that got her. What I mean by that is that the combination of the furnace leak in her apartment several years ago, that did a REAL number on her lungs, was a huge contributer. Her lungs looked like those of someone who smoked, not those of someone who had quit in the mid 70s. The injuries she has sustained over the years, which made exercise so difficult, added to her heart and lung problems. Her weight, which contributed to her diabetes and apnea, added to her problems. Her depression, which sucked the motivation from her, added to her problems. All of these together, I think, were too much. She rolled snake eyes, and couldn't get past it.

I've been playing the 'if only' game a lot. If only we hadn't put her in the extended care facility, would she maybe have been less depressed, and so, able to rally and get better? If only I hadn't pushed her so hard, tried to get her up and moving, would she have at least felt more understood and loved before she died? And truthfully, these are 'what ifs' with no answer. How can I know, if things might have turned out better, had things been different? I can't. Perhaps if we hadn't put her in the extended care, she would just have deteriorated even faster, in Kate's house. If I hadn't tried to push her, would I now be kicking myself for not trying? My only wish at this point is to have her back, to have none of this have happened, to go back to life as it WAS. But I can't have that. And it hurts. I don't know how a person is supposed to live without their mother there to care for them. Even in her last hours, she was more worried about MY worry, than about herself. She wanted to get up and do physical therapy, to make me happy. She wanted to make me smile, giving me rides up and down on her hospital bed. But what she really, truly wanted, was to be healthy again, out of pain, and out of that facility. Well, she is now. But I'm heartbroken, and I hope that if my atheist leanings are wrong, that she's at peace somehow, and can give me some comfort at some point.

This is a crappy last post for a blog, written through the tears of a heartbroken daughter who has lost her mother. You, her bloggy and online friends, who have loved her and been her friends, deserve something more uplifting. I'm sorry that I don't have something better to give. But again, thank you, for all of your friendship and support, and please know, you have meant to the world to my mom, and you have been a great comfort to me.

Updated on Monday, 6/23, to add that I'm doing a bit better today, and that there's a post on that here. I won't clutter up Mom's blog with my own recovery efforts. That's what my own blog is for. But I just wanted you all to know that I'm not doing so much of the what-ifs any more, that I'm going to print up this blog and save it for Maya, and that even though I still miss my mom horribly, for right now, I'm doing a bit better.

Mom's Obituary

Joycelyn Ward
April 23, 1942 – June 15, 2008

We mourn the loss of Lilith Joycelyn Ward. She leaves behind her daughter, Julie, her son, Richard, her brother, Forrest, her sister Lori, her mother, Virginia, her Aunt Florence, and her many nieces and nephews, and their children. And of course, she was Maya’s Granny.

Joycelyn was born in Oakland, CA, and moved a great deal in her lifetime. She lived in California for much of her life, most recently in Sacramento and Citrus Heights, but also spent many years in Stockton and Berkeley. She lived in Juneau, Alaska from 1993 until February of this year.

She devoted much of her life to helping children, from her early days as a Montessori teacher, to her days teaching parenting classes and working one-on-one to help parents who were at risk of losing their children. She also worked as a volunteer coordinator, as a research analyst, as a secretary, and at an organization working to prevent teen alcoholism.

She was a voracious reader, loved to write and tell stories, and found great joy and satisfaction in her blog, Maya's Granny.

Her wisdom and wicked humor will be greatly missed.

Donations can be made in her memory to her favorite charity, Heifer International.

(This obit ran today in the Stockton Record, sans picture. A slightly shorter version ran in the Sacramento Bee, and Richard ran one in the Juneau Empire as well.)

I had a dream

Art by my brother, Richard Ward.

I had a dream the other night. We decided to take my mom off of all of her meds, not just her antidepressants, and she got out of bed and was walking, walking like I haven't seen her walk in about 25 years. Fast and with a spring in her step. She looked much younger, too...perhaps about 40 years old. She had her hair in two long red braids, and was wearing a tie-dye dress and looked so happy. Carefree and healthy and in her prime.

Then I woke up, and for the briefest second, I was truly happy for her. Then it hit me, that no matter if she were to recover, it would never be that sweet full recovery, that fountain of youth. And worse, I knew, in the pit of my stomach, that she would never recover. That this battle was too much for her, and the motivation too difficult to muster. And I almost cried from despair.

And now, it looks as though I was right. My much loved mother suffered a heart attack at around 2am this morning, and she passed away.

How I wish that cold, cruel truth were the dream, and my dream, reality.

(p.s., Ted posted a sweet story on his blog today, a glimpse of what we have lost.)

So.

How are things going with Maya's Granny and her eternal recovery? Not well.

She has stopped eating again, and the antidepressant they put her on that was supposed to increase her appetite reacted very similarly to the Paxil and Prozac, though it's in a different family of antidepressants, so it's probably not the same problem, but a new one instead. They took her off of this new antidepressant yesterday, though they're maintaining the Wellbutrin, as that did seem to be helping somewhat.

She isn't doing as much physical therapy as she needs to do to get better. That worries me. A lot.

She hasn't picked up a book or shown any interest in reading anything since February. That worries me even more.

Part of me wants to follow the advice of those who say to take her off of the antidepressants entirely. They don't seem to be helping, and she's not making progress, so what's the point. On the other hand, they take awhile sometimes to work, and she wasn't making progress without them, either. She wasn't getting up and moving, wasn't eating, was already in the beginnings of a decline. So second guessing myself is probably not productive.

I can say wholeheartedly that mom's friend Kate is a godsend. I've never known such a devoted, giving friend. Mom was sick, and planning to move in with my Grandma and Aunt Flo, but wasn't really strong enough to go to them at the time of her discharge, so Kate offered to have her come and stay with her. Mom was there for a week and a half, and then wound up back in the hospital, then the care facility. Kate has been going to visit practically every day, which takes at least 2 hours out of her day. Brings her food to try to tempt her appetite. Talks to doctors and nurses. Goes with her to apppointments. Tries to be encouraging and hopeful, and that's probably the thing she needs the most. I don't know how many friends would be this generous with their time and energy, and hopefully, most of us will not have our friendships tested to this degree. The emotional side of watching mom get worse like this is not at all what Kate signed up for. I swear, if I win the lottery, I'm buying Kate a car. With air conditioning.

So that's the news at this point, at least as much as I feel comfortable telling on a blog that is not my own. I hope that my mom can get up and moving soon, and can regain her perspective on life, because right now, it's a pretty hard time.

Letters and Cards

Maya's Granny asked me to thank you all for the lovely cards, letters, and postcards that you've sent. It makes her happy to know that her friends care and are thinking of her, and she has been enjoying reading them over and over again.

If her back didn't hurt so much when she sits upright, she would write you back. But for now, at least know that she's grateful, and that she is enjoying them. :)

~J

Cautiously Optimistic

That's where we're at at this point. Maya's Granny is feeling more herself, and is starting to want some control over her own life, which is a big step in the right direction. The healthy MG HATES the idea of being out of control like that, and wants to be reasonably able to determine what is going to happen, and when. So, she knows that she isn't going to get any better if she doesn't eat. So she's asking for what she wants, and is able to get some of it down. I'm not sure if she is enjoying it, but at least she's eating. She wants to get up and walk, but the spasm in her back and leg (sciatica, we think) is getting in her way. A few days ago, that was a reason not to try. Now, it's an obstacle which she wants to overcome.

So...I'm not sure if she's physically healthier or not, but mentally she's coming along. She's motivated again, and wanting to get better. She's taking advantage of the resources that they have at the assisted living facility. All of which is good.

I've thought the struggle was over before, thought the worst was behind us before, only to have a relapse. So I'm cautiously optimistic. Hoping things will be better now. Feeling like they have to be.

Where's Granny?

Right now, she's in an extended care facility. Trying to get her meds worked out (she's off the Prozac, and feeling much better in that way), so that hopefully, soon her depression will no longer affect her appetite and keep her from doing physical therapy. She's feeling better, and on the road to being better. I think it's still a long slog, though. Not a quick answer, not a quick recovery.

Anyway, a few folks have asked how they can get in touch with mom. There's no email address for her at this place, but you could send cards to:

Lilith Ward
c/o SunBridge Brittany Care Center
3900 Garfield Ave
Carmichael, CA 95608

I'm not sure how long she'll be there, and I'm unwilling to put her long term mailing address up on the internet. So don't send anything valuable, as it could get stolen, or it could miss her completely, and I don't know how good the folks will be about notifying her of gifts received. But a card, a postcard of somewhere pretty, a picture? I think she would love that.

Thanks everyone for your support, again and always.

Setback

This setback finds Maya's Granny back in another assisted living facility, as of yesterday. She's not strong enough to take care of herself, and needs to be eating and able to do more before she can be out of professional care. Sigh. The doctors seem to think her major problem is depression, a diagnosis that I don't disagree with.

So now they're going to get her evaluated for that, and figure out what medication they might be able to use that will help her, and won't have the problems that both Paxil and Prozac have caused. She'll have more physical therapy, as well as occupational therapy. Sigh. Not sure when she'll be back to her blog, but it may be awhile.

Back in the Hospital

Hi All, J here. Mom asked me to update you, so you don't worry, and so you don't think she's forgotten you and doesn't care.

Well, she's been doing ok, but not great. There was some misunderstanding between the cardiologist in Anchorage, and the doctor at the extended care facility, and she didn't receive some of the heart medications she should have been receiving. Now, she's in CA, and finally has some insurance issues straightened out, and is in the position to see a doctor. But wait, she hasn't been able to stomach food for awhile now. She doesn't eat, and the smell of food turns her stomach. She's lost a lot of weight, and while that in itself might be OK, she's losing it too fast, and she's not getting any nutrition to give her the strength she needs to do physical therapy, etc.

Then, early Wednesday morning, she fell and hurt her back. Not horribly bad, not enough to go to the hospital, but badly enough that she's very uncomfortable, and can't get up, can't go to the bathroom without help, can't have a bath without professional assistance, etc. Poor Kate is, at this point, watching my mom decline, seeing her get weaker and weaker, trying anything she can to get her to eat so she'll feel better SOON. Nothing works.

Then this morning, mom wakes up and is feeling queasy, queasy like she did when she had her heart attack. So Kate called the advice nurse, and they said to get her to the hospital.

So. Mom's back in the hospital. They ran some tests, and she has congestive heart failure again. She may have pneumonia, they're checking on that. They're straightening out her medication issues, getting her started on physical therapy again, and trying to figure out what the problem is with her appetite and not eating. She'll be there for a few days, perhaps longer. Then, since Kate isn't able to give her the care she needs yet, nor am I, she will probably go to another assisted living facility for a short time. Then, hopefully, back to Kate's house.

That's how I spent my day on Thursday. At the hospital. That's how mom and Kate spent Thursday, at the hospital. But Kate and I got to go home. Poor mom, she's stuck.

Still Alive

Very tired. Moving slowly. Seeing a doctor on Wednesday because I can't eat.

Thanks for dropping by. Love you all.

Update

I haven't forgotten you. My hand is still stiff, I spen Wednesday and Thursday takng care of business and in the car. I'm resting but zonked.

Kate & I are having a good time.

Hi!

Here I am, safely in Sacramento.

Tired. Having trouble with my left hand. But here. At Kate's house. With one of my best friends in all the world. With Meyer lemon trees and a wisteria arbor. With wind chimes. Loved and cared for.

And needing to say thank you to all of you. For hanging in and waiting for me. For good wishes.

And for the incredible generosity that helped my kids pay for this move. There are no words that express my gratitude enough.

So these few will have to do. Thank you! There is no treasure greater than freinds. And I am a rich woman.

Moving Day

Saturday is moving day! MG will be moving from the assisted care facility in Anchorage to her dear friend's house in Sacramento, CA. She'll be staying there for awhile, until she's up and around enough, at which point the plan is for her to stay with my Grandma and my Great Aunt in Stockton. MG loves Sacramento and Stockton, except for the heat and the fact that they're not as pretty as Juneau (few places are, to be fair).

She'll have a laptop (another gift from Richard!) in Sac, so she'll be able to post more then. I'm thinking you may not hear from her until she's been settled a few days, though. At this point, she's still not sleeping much, only an hour or two a night, and so the work she has to do during the daytime is wearing her out. Hopefully that will be figured out soon. Sigh.

We're all looking forward to the end of this phase of recovery, looking forward to the next phase, which will of course have its own challenges to be met. One day at a time, as they say.

Thanks again to everyone for your devoted and continued support. It has meant a lot to me, and to Maya's Granny, and to Richard as well, even though he's not much involved in the bloggy world.

~J

Update

Hi All,

J here. Maya's Granny asked me to tell you that she's fine, but that she has been crazy busy with this and that, physical therapy and occupational therapy and dr. appts. and sleep studies and so on...so she hasn't had a chance to post, but she will hopefully be able to get to the computer soon. :)

Love,

~J

Errata

Masks:
You probably know that I use a CPAP machine when I sleep at night. And because of the long summer days in Alaska and the fact that my apartment had no curtains, I also use one of those Lone Ranger style sleep masks. It occurs to me that I look like the insect god when I sleep.

Amenities:
If you know anyone staying for a while in a hospital or extended care facility, among the things that will make life good for them, are:
books
CDs
their favorite herb tea
a real cup to drink it in
lemon drops or other hard candies to combat dry mouth
hand lotion
mustard and salt to "fix" the food
a small amount of fresh ground coffee to cover other smells
dried fruits
nuts
crackers

For Carol, and others wanting to get in touch with MG

Hi All,

Mom asked me to post instructions on how to get in touch with her at the Extended Care center for the next two weeks...her friend Carol left a comment asking how to get in touch.

You can email her using this page.

Select Providence Extended Care Center from the drop down menu, and she's in under the name Lilith Ward. She can't write back to you from this email address, but she will receive your message on a printout.

The phone really tires her out, so I'm not going to put her phone number here for folks to use. She can add that if I'm wrong. :)

Upnight Part 2

So, the cna who left me to "fall asleep".

After I had been up for a while and my legs had stopped twitching, I rang to be put back to bed. (And got some more sleep.) The cna and the nurse both came in. And, I said:

"What I want is to go back to bed, but I'm afraid to. If my RLS returns and I need to get up, I'm afraid that you will leave me in bed "to fall asleep" for 1 1/2 hours again, and I'll have to go through that torment again."

The nurse not only gave the cna what for, she reported it to the nursing coordinator.

We got two doses of Perkocet last night. However, I may be having a reaction with some other drug I'm taking, because they didn't last four hours each. The first lasted 3 and the second 2. I need the doc to amend the order again, to allow for a third dose (of 1/4 of a tablet -- it's not a lot) during the night if I need it. I wonder how long that will take. The nurse and I are hoping for today but I'm not counting on it.

Updatenight

So, here we are a few days later. The second night, same problems. About 12:30 I realize that my legs are doing Riverdance up the bed frame. Duuhh!! Restless legs. Had them for years, but I've been able to control them for the last three. One quarter Perkocet at bed time, another every four hours. But there is no way to get this cure now, because the nurse can't give me any drugs without doctor's instruction and there is no doctor available after 11:30. But, now I know what the problem is and can relax. Immediately that I pay attention to my legs, I begin to feel that the need to pee is not a need to pee, but a need to twitch! & then at 4:00 the attack ends, & I have the cna put me to bed. Just as I've drifted off, there is a lab tech to try for blood! This dialog is literally what I said.

"No!"

"It's doctor's orders."

"Young woman, has no one ever told you that to wake up a woman with multiple sleeping disorders just as she has finally fallen asleep two nights in a row is a capital crime? Run for your life!"

Which she did.

Two hours of sleep.

The next night, the nurse has told the doctor what the problem/solution is & at 9:30 brings me the Perkocet. I sleep for 3 hours & request the 2nd dose. Except it hasn't been ordered & it's past 11:30.

Three hours of sleep.

Yesterday morning the nurse tells the dr. the problem & requests orders for the second dose. 9:30, get my dose, sleep 3 hours & the nurse goes for the second dose, only to discover -- the doctor hasn't amended the orders. & it's now after 11:30*
So I decide to get up & sit out the attack. I signal the cna, she tells me she 2 people to deal with and then will help me up. 1 1/2 hous later & I'm twitching out of my mind, still in bed. My roommate & I both start to ring. The cna comes in & tells me she had left me on purpose! Knowing I'd fall asleep!

I dealt with that & will tell you later, but I have to stop & let my arm rest.

* I have now added a new sleeping disorder to RLS & apnea. Dr. Agnew's bedtime.

Night From Hell

Shall I start by telling you I survived? Yes, we will take the mystery out of the entire thing.

Friday, Saturday, & Sunday nights were rough because I kept waking to pee and not getting as much sleep as I needed. Falling asleep during the day. Low energy.

So, Monday the doctor gave me a new sleeping pill. I took it at 9:30. By 11, I had been up to the bathroom 5 times. Never much, but the need was there. By 3:30 I was in despair and asked for (yes, asked for) a diaper. Except that my mother trained me too well -- I can't do that. At 4:30 I had stopped needing to go to the bathroom, so knowing that my insurance only pays for me to be here if I go to physical and occupational therapy, I figured I would sleep till 10:30. Got the nurse to help me to bed, and discovered that the call light had fallen between the bed and the frame. Couldn't call the nurse to rescue it because. . .

Finally got it fished out, was starting to fall asleep, figuring now on maybe four hours of sleep, and in comes the woman from the lab to take my blood. When she told me why she was there and refused to leave, my hands under the covers turned to claws. Twice she stuck me, and twice the other person she got stuck me and all four times hurt and none, count them 0, got any blood.

By now it is 7:15 and the joint is wide awake and I know I'm not getting any sleep. So, up I get. And discover that the person who ordered this blood letting was the same person who ordered the sleeping pill. I have a little hit list. One doctor and two bad clumsy lab techs.

Oddly enough, I've had a great day. Go figure.

I Actually Saw These At The Time

Last year, Chancy at Driftwood Inspiration posted this lovely story about Exotic Gardening which mentioned a BBC broadcast I had seen when it was first aired in 1957 about the Swiss spaghetti harvest.


When I was in Philadelphia, the year Maya was born, the local paper ran an ad for The Taco Liberty Bell claiming the federal government, in an attempt to reduce the national debt, had sold the Liberty Bell to Taco Bell.

The full text of the ad read as follows:

Taco Bell Buys The Liberty Bell
In an effort to help the national debt, Taco Bell is pleased to announce that we have agreed to purchase the Liberty Bell, one of our country's most historic treasures. It will now be called the "Taco Liberty Bell" and will still be accessible to the American public for viewing. While some may find this controversial, we hope our move will prompt other corporations to take similar action to do their part to reduce the country's debt.

In a related release, the company explained that people and corporations had been adopting highways for years, and that Taco Bell was simply "going one step further by purchasing one of the country's greatest historic treasures."

I got this ready for April Fool months ago. This computer doesn't show the pictures, so I can only hope.

Update, Whopper

It worked & it didn't.

I was able to eat half the meal. The best food I've had in a month. But it didn't carry over. However, I was able to eat yogurt & pudding for dinner. & Dale brought me some freshly ground coffee beans to mask other food orders.

I feel a little more like, being able to blog and taking some control of my life. I still need help getting into bed, but I can figure out ways to help.

Sunday

So, here I am again. I think I will have Dale bring me some tea along with the Whopper! We don't have B King in Juneau, so I had the title wrong.

Yesterday was very tiring. So I took it off. Napped in my chair a lot. I know what would perk up my appetite for sure, and even though recreational pot is not illegal in Alaska, I don't think they can use it medicinally. & everyone I know who could help me is in Juneau!!!!!

What a sadness.

Anyway,so good to hear from all of you. It makea my day even when I haven't the energy to respond. One thing I've realized, that for all that I've lost, I didn't lose this or you. I'm still Maya's Granny!!!!

Slowly, Slowly

I usually type about 120 wpm. With my current numbness I am discovering just how much of that is with the left hand. So, it is the middle of the night & I've had 9 hours & decided to start on this & work on it all day off & on & get something done.


Very frustrating -- I was never good at hunt & peck. The next time I see my doctor, this is going to be item #1 to discuss. This had better be temporary!!!

So I saw the Dr. and, despite my fears, my hand will recover. Meantime, I am hunting & pecking & not saying much, because it it exhausting. I am having trouble getting enough sleep every night & food repels me. I eat in my room because other people's food gets to me. Open the tray, eat 5 or 6 bites, get it gone fast, fast, fast.

If anyone knows of anything to erase the smell of food let me know & I'll have my nephew, Dale, get some. T hank heavens for Dale! Sunday, on the theory that something I've been wanting may jump start some appetite, he is bringing a quarter pounder for lunch.

Busy Busy Busy

Hi All, J here. Mom is being kept very busy at the extended care, and they're pretty much wiping her out. Today she had breakfast, shower, occupational therapist, dr. appt (that included a trip to the hospital), lunch, physical therapist, something I'm forgetting, and somewhere, dinner. She was too worn out to get to blog. Tomorrow she has a very similar schedule, with occupational therapy, physical therapy, another dr. appointment, meals, on and on. She is planning on getting here to blog, but can't promise.

Her left hand seems to be numb. She spoke to her doctor about that, and the doctor said that is very common after heart surgery, and in 99% of cases, all feeling comes back within 3 months. Which is good, but not much use right this minute.

Her blog is keeping her motivated, though. Talking to you, and hearing from you, is one thing that she can look forward to EVERY DAY. Of course, she can also look forward to talking to family, but that's different. As you all know, family is family, and a blog is truly one's own. So she will be here when she can. She loves you, and the blog, too much to stay away.