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.)

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.

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

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

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.

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.

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.

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.

What Shall I Rave About Today?

So here it is 9:16 in the AM and I'm trying to figure out what to write about today. My left hand has gone numb for some reason, which makes it hard to type. I have lots I want to say but not much skill to say it.

One of the major problems with the last couple of years was my job. I wrote about the job that I loved, Burnout*. How I left it and found another that wasn't as good a fit and I got very sick and left that job. It took some time to be well enough to find another job. The job with the teens I never intended to stay with for long because it was too easy but at the same time I felt like I wasn't doing a good job. I realize now that I was sick the entire 18 months I was in that job. And when it ended I couldn't find another job. Every application I submitted resulted in an interview.

I have never before gone more than 3 interviews without an offer. Now, 20 interviews. Not a single offer. Talk about depressed.

* This computer at the extended care won't load pictures or link posts. (J's note, I liked it for you, mom. :) )

So It Goes

So here I am. Not very bright and clever. But not lost. Working on a new keyboard, so clumsy. Much I'd like to say, but my hand goes to sleep and my butt aches. I wish my body felt better and worked better. Talking tires me, as does listening. I want to sleep and wish I had the energy to be awake. The hours pass slowly and I am beginning to realize that I am depressed. Dare I say it, Cheerful Charlie that I am? Depressed.

I have spent my life being optimistic and cheery and I have decided to let myself be unhappy here. I think that the more public my outcry the better it may do me, on the theory of not hiding a thing. So, prepare. For a while, I may just rant and rave.

What has this sickness cost me? Shall we start with my Hooligans? My soft, silky loves. Inky Pippin and wicked Merry? I will never again wake up with Pippin on my hip and Merry on my feet. Never. I feel so empty without my Hooligan boys. And they will never understand. One day I went out to breakfast and never came back. And they lost me and home and each other. They've been together since the womb, and now they are not. And I want to cry and scream and yell and carry on. My babies.

I know that they will adapt. One day they may not even remember me. But I'm not certain I'll ever recover. Yes, I know I will. But I don't feel like I ever will.



And I love them so much. I enjoyed their company and the soft warmth of their little beings. Merry cuddling on my chest and purring like all get along. Pippin looking me in the eye and knocking things off the desk. Very much on purpose. Sheer delight. How can I go on without them?

Well, Hi Again

I'm back! Tired and not very active yet, but back. With a computer available in the break room.

The notice says to limit to 20 minutes or less and I've been reading comments so I'm going to leave you for now, but I'll be back before the day is out.

Monday Update

Hi Everyone, J here again. Mom seems to be doing better every day, and is now ready to be moved back to the Extended Care Facility. I don't think she suffered a setback so much as she was moved before she was really ready the first time. And of course, the anti-anxiety drugs were no help at all. But over this last week, it sounds like she's made a lot of progress emotionally and some progress physically, and is getting her head wrapped around what needs to be done. And one thing about Maya's Granny is that once she has the challenge figured out, she tackles it head on.

One nice thing about the Extended Care Facility is that it has at least one computer that patients can access, and I'm pretty sure they wouldn't do that without internet access, so it's possible she'll be back to blogging herself soon! I know she'll at least be reading if she gets the chance. Perhaps I'm being premature in hoping she'll be back online soon, but I'll let you know if she doesn't have access.

So all signs are looking up, I'm happy to say. Mom and I have had much better conversations this week, which has been a relief with her off of the heavy meds. The 'mom moving fund' has been GREAT, and has raised $1,780 thus far. With our expense being $3,800, that leaves just over $2,000 for Richard and I, which is SO much more manageable than the numbers we were looking at just a few weeks ago. Again, thank you to everyone who has been able to chip in. And of course, thank you to everyone for your kind words and continued support. I'm hoping this will be the last you'll hear from me over here, and mom's voice will return where it belongs. If you need to find me, as always, I'm over here. :)

~J

Time for an Update?

Here we are, and it's a few days since I've updated you. Last you heard, mom had been transferred from the hospital over to the extended care facility. Well, that didn't last long. There was some sort of problem with some anti-anxiety drugs that they gave her, and so she was having trouble breathing, and they sent her to the emergency room early on Saturday morning. These things frustrate me, because of course I'm so out of the loop, I don't know what's going on. And the nurse in the ICU scared the hell out of me, telling me that mom's lungs and heart are in terrible shape, and making it sound like she might never be well enough to leave. WTF? That scared me, and some other things scared me, and it sounded like gosh, she might die anytime now, and maybe she had given up, deciding that her quality of life wasn't going to be what she wanted, so she was done. So I cried, and I called my grandma and made her cry, too. Grandma has already buried two of her four children, and would not like to outlive any more. So we got the whole family all worked up, and had a fairly surreal Saturday. Sunday, I called to see when they thought she might be taken off of the ventilator and be allowed to wake up, and instead of talking to the nurse in the ICU, I was able to speak to my mom, who was feeling MUCH better, was awake and alert and more chatty than she's been in over a week. I spoke to her doctor, who didn't mirror any of the concerns that the nurse the day before had shared with me. I'm still hoping to talk to another doctor about a more long term prognosis, and this is part of what is hard about being so far away...sometimes they don't want to give out information over the phone, and when they do, sometimes I don't think to ask a pertinent question until much later, and I don't know what the hell is going on.

I just called and spoke to my mom a few minutes ago, and she sounds great. She is more lucid and coherent than I've heard her in awhile. I believe this is because they have her off of the Paxil. She's asking for lemon drops, because her throat is so dry. I have a cousin in Anchorage, so I'm going to ask if he can bring her some. But more importantly, she is coherent enough to realize that although she has very little control over her life and its schedules right now, she would like to know what is going to happen, so she can give it some predictability at the very least. And she is planning to discuss this with her physical therapist and doctor, which is a huge improvement over her wanting me to call her nurse and ask her to go in and help her change her tv channel, which was how she was under the Paxil.

So that's the update, where we are now. Mom is doing well. Not as well as if her lungs were healthier, I suspect. But well. I'm not sure how long it will be before she is moved back to the extended care facility, and not sure how long between that move and her coming to California. But at least things are looking up.

And I thought of updating you on Saturday, telling you of all of my fears and how she might die at any time, but just talking to family about it was making me cry, and I hadn't told all of her friends and family yet, and didn't want folks to learn about it via the blog. I wish none of you would find out bad news, should it come, via the blog. But for today at least, the news is good, and mom's in fighting shape, looking forward to moving to CA and being closer to more family, though of course she will miss Richard and Kathy, and her beloved Hooligans, and her many, many dear friends in Juneau.

Good News Update

I spoke with the Nurse Practitioner who is in charge of my mom's case this afternoon, and she said mom is doing MUCH better. That she seems to be reacting really well to being off of the Paxil, and that she seemed chipper and upbeat.

She left the hospital today, and is being moved to an extended care facility in Anchorage, where she will continue to receive both physical and occupational therapy until she is ready to come to California. If you would like to send her an email there, you still can at the same website, just pick Providence Extended Care from the drop down, and remember to address it to Lilith, not Joycelyn. (Joycelyn is her middle name.)

You have no idea how relieved I am to hear that she is doing better. She was really resisting her physical therapy, not wanting to get up, not wanting to help the nurses to help her. She was like a different person than the mom that I know, and that was kind of scary. I was starting to wonder if something had happened with the anesthesia or something. But she got up and walked 4 times yesterday, vs. earlier in the week when they could barely get her to walk once. Oh, what a difference it makes to not be on medication that isn't helping you in the least!

So, it's still a long haul, I would think. She still has a lot of discomfort, and a lot of hard work, ahead of her. But it's good to know she's back on board with this whole thing, and feeling better. Even if she is still tired and sleeping much of the time. ;)

More good news: Richard received word that the estimate for moving mom's things to California was high, really high, and the actual expense will be closer to $4,000. Whew! We have received $1,310 from kind souls; friends and family that we know in person, and friends that we only know through the internet. Please know that your generosity is greatly appreciated, and has made a difficult load easier to bear. Not just financially, but also emotionally. Thank you all.

Mom updates

I've decided that I'm going to post updates below the 'hat in hand' post, in case people come looking for it. Updates on her progress will be just below. ~J

3/11/08 - There's an update below...
3/12/08 - Update on her surgery today...

Hat in Hand...

Hi Everyone, J here again. While I was in Alaska fretting about mom's surgery and trying to keep friends and family updated on her progress, Richard has been in Juneau figuring out how to get her things moved down to California. He and his wonderful wife, Kathy, have been going through her things and trying to figure out what goes to California, and what gets tossed. It's not easy to go through someone else's things and figure out what has sentimental value to them, and what is something that is just sitting there because the person didn't have enough energy to throw it away. I don't envy him the task.

Last week, the movers came, and assessed the cost of shipping her things...and it came out to almost $8,000. ACK! Richard is going to put this on his credit card, and it will take a long time to pay off. I'm planning on chipping in what I can, but I'm not sure how much that will be.

So many people have asked how they can help, if there's anything they can do to help make the burden a little bit lighter. You have all helped already with your well wishes and support, which has meant so much to us, and to my mom. If you are in the position to help out a bit financially as well, and if you're so inclined, we would definitely appreciate it. And if you would like to help, but you don't have a paypal account, email me at j_asregadoo AT yahoo DOT com, and I'll write back with Richard's snail mail address, which is where any checks can be sent. If you prefer paypal, here's a button to a page Richard has set up for mom's move fund.

Again, thank you all so much for all that you've done. You don't know how much it has helped us already, especially mom, who has loved hearing from you all via blog comments, email, snail mail, and flowers. (Dea, the first thing she said to me when she came out of her drugged state was to please thank you for the card. :) )

~ J

Update: Thank you so much everyone...thus far, we have received over $1,200 toward mom's move, which will help a LOT. You are too kind, and it means a lot to us. The support of all of mom's friends, and of our friends, has meant a lot. Thank you.