Friday, May 30, 2008

Change for the better in my mother

Unexpected good news: I talked today with Linda, the hospice nurse, and found that my mother is now eating much better than she has in months. I had called the nursing home yesterday and talked to the nurse assigned to her for that shift, and she had said my mom ate fairly well at lunch, some mashed potatoes and squash. And, I talked to my grandmother for a while this evening, and when she visited on Wednesday, my mom was asleep much of the time, but she had also been told that my mom's appetite had improved. I'm not sure when this change occurred, if it's just the past several days, or since last week, but it's the most positive news we've had in a long while.

I did ask Linda what this means for her hospice care. For the time being, she'll continue with hospice, adding that "extra layer" of care beyond the regular services of the nursing facility. It's true that her physical condition, which had already put her heart at risk before her eating slowed so much, is still far from good. If she's able to eat "normal" kinds and amounts of food - perhaps half or two-thirds of most meals, and not go overboard with candy and those things - she'll gain back some weight, and won't starve to death, which I was so afraid of when I learned she'd lost 15 pounds in two weeks. But although she shouldn't be as weak then as she's been the last few months, she'll have the same kinds of physical problems that she had six months ago and more. A person can't smoke cigarettes for 40 years, eat poorly, and not exercise, and expect their body to serve them well indefinitely. Her body has rebelled for years already, and feeding it is very good, no question, but I don't think this will bring about miraculous changes.

I am working this out in my mind as I'm writing. What I mean is, given that her hospice diagnosis was end stage cardiac disease, her eating again doesn't change the precarious situation her heart is in. I think it's more likely, though, that she'll be here longer than we had come to expect in recent weeks. I do see this as very good news, a positive sign where I had stopped hoping for one. I'm so glad for it, glad to be wrong.

OH - almost forgot. A while after I talked to her assigned nurse yesterday, someone else at the nursing home called me to say they planned to move my mom out of her private room. She confirmed that the MRSA infection my mom has had for MANY WEEKS had finally cleared up (meaning, three successive cultures came back with negative results), within the past week or so, but they didn't want to move her from the private room until someone else needed it. That being the case now, they planned to move her to another room today. I hope she gets a roommate she's able to talk with, so that she might be a little less lonely.

Busy, busy, busy, and Bee

TGIF. The past week to ten days has been sooooo busy. A summary is in order.

Wed., May 21 - Kyle and Ryan's last day of school

Thur., May 22 - Jut and Lisa and the twins arrived very late evening

Fri., May 23 - Jeff and I took day off work. Visit with Jut & family at Papa and Grandma's house, then to Lawrence (Jut & family plus our family, eight total in two vehicles even though gas is OUTRAGEOUS) in afternoon to visit KU and do a little shopping. (I bought three books at The Dusty Bookshelf, including Emily Dickinson's complete poems, pleased with my purchase there.) We did not have dinner in Lawrence, but came back to Grandma's for dinner. (Actually, Grandma cooked a significant amount over these few days, and once set out sandwich ingredients for us. Many meals at Grandma and Papa's house.)

Sat., May 24 - I walked to Hasting's in the morning, then Jeff, Jut, and Lisa met me there and we all did some kid-free browsing. :-) In the afternoon, I cleaned the kitchen and listened to my audio of Moll Flanders. I think this was the evening we watched Bee Movie. Here's my plug: if you think Jerry Seinfeld is funny at least half the time, you need to watch Bee Movie. It doesn't matter whether you have kids or not, just rent it for yourself. Borrow a kid to watch it with if that makes you feel better, but I'm telling you, you don't need that excuse: if you like Jerry, you'll like Bee Movie.

Sun., May 25 - Large brunch at Papa and Grandma's house, then cake and presents for the twins' upcoming birthday (I think it's actually today), lots of eating and taking pictures and some videotaping. Later in the day, the twins napped while Jeff and our boys went with Jut and Lisa to see the new Indiana Jones movie. I was happy to stay home alone and clean the bathrooms while - yes, you know it - listening to more of Moll Flanders. I'm really liking it, SHOULD finish it this weekend. We got pizza for dinner. :-)

Mon., May 26 - Jut & family and our family went to Chuck E. Cheese's so all the kids could play games and wander about at an age-appropriate level. Kyle likes to see how many points he can get in the basketball shooting game. At one point, he and Jut were shooting side by side, and they each finished with 61 points. I love watching Kyle do basketball, it makes me so proud of him and proud to be his mom. Later, minus the twins, we went to Barnes & Noble for a while, and then everyone else went to Kohl's while I kept looking in B&N next door. After they dragged me away (got two new books!), we went to the Sports Center, where Kyle drove a go-cart and Ryan & I played mini-golf. In the evening, big family gathering at Bretta's house (Bretta being one of Jeff's cousins) - with plenty of food, as usual, but not much food that our sons would eat, also as usual.

Tue., May 27 - Jut and Lisa and the twins left very early for Kansas City, to fly back to California. Papa and Grandma drove them. Kyle and Ryan started their four-morning basketball camp at 8 am, and I went with them, then waited till Papa could come take my place after getting back from the airport. I got to work at 930 am - not too bad. In the evening, Ryan had a T-ball game.

Wed., May 28 - In addition to basketball camp, this day was also the kick-off of the children's summer reading program at the Topeka & Shawnee County Public Library. I left work before 2 pm to get the boys from Papa and Grandma's, then we went to the library for longer than I had planned. I brought them back to work with me for the last hour and a half of the day.

Thursday and Friday - Basketball camp, and Jeff takes Friday morning off. But after the excitement of Jut and Lisa and the twins visiting, things are starting to settle back down into a more "normal" busyness - or at least what's normal for the summer months. Still got a few more T-ball games to go!

Saturday, May 24, 2008

PBS program about depression

Only a couple minutes to write, but wanted to note a very good program about depression that was on PBS a couple nights ago, called Depression: Out of the Shadows. It was followed by a Q&A with Jane Pauley and three experts on different aspects of depression. They are reairing the program a couple more times - or, more accurately, I think it's already been rebroadcast once - on our local PBS station. It'll be on again in the wee early hours of Monday - I think it starts at 3 am. The program was 90 minutes, then the Q&A was half an hour. I wish I'd been able to see the whole thing, but missed a few parts of it. Jane Pauley talked a bit about her own experience - she was ultimately diagnosed as having bipolar illness. They talked in the program and the Q&A about the stigma of depression and mental illness. My feeling is, like sexual abuse, it's one of those secrets that SHOULDN'T be kept. There were a few people in the program who had undergone shock treatments (Electroconvulsive therapy, or ECT), including one who wasn't helped by ECT and tried an experimental treatment that did help. It made me wonder, if we could have gotten Medicaid coverage for ECT for my mom - and then convinced her to actually have it - would she have improved? Could she have found pleasure in something, some level of contentment or peace? Would she not be essentially starving herself now?

Wednesday, May 21, 2008

Talked with Linda, the hospice nurse

I called Linda, the hospice nurse assigned to my mom's case, yesterday, and she said she'd call me back today after seeing my mom. She called me at work, late morning, and I took the following notes:
  • My mom is usually "very quiet" lately. Today, Linda said, she opened her eyes and looked at Linda, then closed her eyes again, as if to say she didn't feel like talking today.
  • The nursing staff got her up for a shower this morning, and weighed her. She's at 99 pounds, still eating very little.
  • She has Ativan scheduled three times a day, rather than just as needed. (Linda said yesterday, why not give her the Ativan so she's relaxed and comfortable, rather than waiting until she's anxious and weeping and THEN decide she should have some? I agreed, let's keep her comfortable, not agitated.)
  • A lot of her medications were recently discontinued, as the focus has changed from aggressive treatment to comfort measures. She usually takes her meds pretty well, though for example, some days she might have Ativan only twice instead of three times, but that's all right. Today, she was refusing all of her meds.
  • Incredibly, her cardiovascular status is stable.
  • She told Linda last week that she's ready to go and be with her husband, but she told someone else within the past few days that she doesn't want to die.
  • Linda said, "Although Jerilyn and I have said we'll let you know when your mom enters the preactive phase, it's possible that it won't happen, that she'll just -- go to sleep." I told her I understand that might happen.

Linda also said she'll make an effort to give me a call about every five days or so with an update. I appreciate that, because while "no news is good news" in most situations, even just hearing that there's no significant change, and getting an update on her recent mood and demeanor, things she might have said, those kinds of details can be a big help when I'm trying to relay to other relatives how she's doing.

Friday, May 16, 2008

Update on my mother – Spring 2008

This blog was originally posted on MySpace on May 5, 2008.

I talked in my last blog about a friend of ours who passed away very unexpectedly, a few weeks ago now. What I didn't say was, when our friend Jeff W. took a turn for the worse (on or before Sunday, April 13), I was in Massachusetts to visit with my mother, and with her doctor, her hospice social worker and hospice nurse, and any of the staff there at the nursing home who needed to touch base with me, or who happened to be there ready to provide information.

My mother isn't quite dying, but she's not eating much at all - popsicles seem to be fairly popular with her at the moment. Sometime back in March, a nurse from the hospice agency called me to say that the doctor had invoked the Health Care Proxy, so that I would now be responsible for making decisions about her health care. My mom had been removed from hospice care the previous week, when she was admitted to the hospital - her second stay in Intensive Care in as many months. (It's mainly about billing: she's not receiving hospice services while she's an inpatient, and instead of payment going to the hospice, it needs to go to the hospital for those dates of service.) When the doctor invoked the HCP, we also decided to switch her back to hospice care.

What followed then - changing her to a "Do Not Resuscitate" (DNR) status, which she hadn't had before. When I expressed reluctance, the nurse from the hospice explained it this way: "First of all, when they do the chest compressions, they'll break her ribs," and it just got worse from there. She told me my mom had lost 15 POUNDS IN 2 WEEKS. That's a serious lack of appetite, I had to agree. She told me I could think about it over the weekend - as this was a Friday - and I thanked her for that. I said that I understood everything she said, but how could I tell my 90-year-old grandmother, my mom's mother, who visits the nursing home whenever she can in spite of her own ailments, how could I tell her that in the event her daughter's heart stops, we've decided to just let her go?

Thankfully, when I talked to my grandmother the next day, she understood, and agreed it was the best thing to do. I signed the paper Monday and faxed it back to the hospice agency. But then I couldn't help thinking, I need to get to my mother, I need to see for myself how she is, and to just be there for her, let her know I'm there for her. I set about planning a trip, which I was able to take just a few weeks later.

I signed all the papers: another DNR, plus a DNH (Do Not Hospitalize), and decided she didn't need to have blood drawn, IVs inserted, feeding tube placed, or weight taken (except once per month, by her hospice nurse manager). Comfort care only. I talked with the doctor for the first time, the day before I flew to Providence, and I asked, "How dire is her situation? It seems that I get a different report depending on which nurse I happen to get on the phone." He said, "I don't have a crystal ball. It could be a day, it could be a month, it could be a year." But he assured me there were no signs a crisis was imminent.

Our visit was mostly good. I first saw her on Sunday, and helped her with her lunch, cutting some of her chicken for her. She actually ate a good amount of her chicken and rice. I got my hopes up too high. Monday's lunch was four or five bites, and Tuesday's lunch (just a short time before I left for the airport) was one bite, and then "My throat hurts," and then, "I don't want any more." A short time after that, she got a popsicle, and was sucking on that when I walked out the door, her wish to "say hi to Jeff and hug the boys" following me to the nurses' station and bringing dammit stinging tears to my eyes. I went outside to where my cousins were waiting for me, and told them she wasn't crying, she was fine, it was just me crying "because she was actually thinking of someone besides herself!"

No, she's not technically dying, not yet, but she has end-stage cardiac disease and is barely eating and only wants to lie in bed, sleeping as much as possible. She will not get better, and at some point, she will get worse. She hasn't been a happy person for a very long time, if ever she was at all. She misses my dad, and told the hospice social worker she's looking forward to seeing him again. I love her, and I told her so, and she replied the same. I hope for her to find the peace later on, that's never been hers while she's lived. I hope there is a heaven, for my mother's sake.

I call it "All the parts" because ...

In the summer of 1993, my Aunt Helen lent me the Pulitzer Prize-winning novel A Thousand Acres by Jane Smiley. When I returned it to her, I told her my biggest secret: that I had been sexually abused when I was a child. She said to me, as we both cried, "You've really lived a thousand lives, haven't you?" and I said I had.

But another way to view it is not as many separate lives, but as all the parts of one life. This is my jumping-off point, with many thanks to the poet Adrienne Rich for writing those lines that have spoken to me so deeply for – at least a dozen years, and maybe more. I want to include updates and musings about my family and our day-to-day lives, yes, but I also want to be free to be as open and honest as possible about myself, and the forces that have shaped and influenced me – because after all, I’m the one doing the writing! The only perspective I have is my own.

As I get older, and have "dealt" with many of the issues of my childhood, it fascinates me to see how the pieces of the past continue to impact how I think and feel, and the things I do. I've spent many years trying to get beyond all the "stuff," and am physically living far away from my hometown and all the people I grew up with, and yet it's always with me, goes with me everywhere.

Today, I'm a wife, married for ten years to a very good man, a good father, and probably the only person who could put up with me for this long. I'm a mother to two handsome and healthy young sons, ages eight and nearly six. I'm a librarian - a job choice that first occurred to me when I was about eight years old, and I began to see that women could have jobs other than teacher or nurse, and I thought being a librarian would be THE BEST! I work for the Kansas Dept. of Transportation - some 3000 employees statewide, and one librarian. It's a challenge, every day, but I love it, and having spent too many years NOT working in libraries, I appreciate the place I'm in now.

Some of the other "parts" are far in the past. My parents met as patients in a psychiatric hospital. I struggle with depression, except some days I'm too tired to struggle and I just go back to bed. I hated, hated school, and was truant from third grade onward. I was taken to court twice because I wouldn't go to school. I dropped out of high school - FINALLY!!! - but later earned a Bachelor's degree in English and a Master's in Library Science.

When I was an adolescent, I think reading and writing might have saved me. I wish I could write more often, and more successfully, but the time available to write, and then to edit and polish, is next to nothing. (Blanket apology here for blog posts that just aren't as well-written as I'd like them to be.) I used to say that I felt stronger, more truly myself, when I had a pen in my hand, than any other time. I sometimes feel that way now about being at a computer keyboard. Sylvia Plath used to say that the typewriter was an extension of her body. I think typing is the closest I'll ever feel to playing a piano.

And books... I can hardly begin to say what books have meant to me, and always will. A very good friend asked me, when we were teenagers, if my books were sacred to me. My friend was more religious than I, and I told him then, "Not in the same way that you mean, but yes, they are." I don't feel defensive anymore about books and reading. Of all the parts of my life, it's one of my favorites, and gives me back a hundredfold what I put in. I am a Lover of Books, and of their Endless Kisses.


In the interest of providing a quick update on what's been going on with our family this past month or so, I'm re-posting a couple of blogs that I first posted on MySpace. This is a short one, posted on April 21, 2008.

Jeff is driving the boys to school, and I may have five or ten minutes to write - incredible. It is nearly 830 am, and we have a memorial service to go to that starts at 10 am. One of Jeff's close friends (also named Jeff), whom he met around 1990, passed away last Wednesday 4/16. He had a seizure, found to be caused by a brain aneurysm, and had surgery on about 4/7. He began to recover, but developed meningitis, and the following Sunday 4/13, we learned he was suffering strokes. On Tuesday or Wednesday, they removed life support. Jeff W. was my age, 36 years old, his birthday a few weeks after mine. His wife is 34, and they have a daughter and son. It baffles my mind, and I feel terribly for them. What is to be done? What can be done?

Wednesday, May 14, 2008

It's mostly about communication...and time

Every year in December, my husband and I send out approximately 50 Christmas cards to friends and relatives all over the country - well, mostly my friends and relatives, because half of Jeff's family and friends live pretty close to us. We include family photos and/or photos of our kids, plus a letter sharing the main events and progress made (or not) during the year. (The "annual update" usually has a humorous angle. I'll give Jeff credit for 98% of the humor and content; my main responsibility is correcting spelling and grammar, and "approving" content.)

The rest of the year, we are busy living our lives. We work full-time, and our sons (Kyle is eight, and Ryan nearly six) always have school activities and sports and things they need us to do with them or for them, and we try to keep the house somewhat clean and organized, and there's always shopping to do, and frequently we find ourselves playing referee as the boys argue and bother each other daily -- it's just BUSY, all the time, and it's enough to wear a body out. I'd like to be more in touch with friends and relatives, but leisure time is generally short and often interrupted by a boy needing something (nearly always requiring a move to another room), a spouse wanting a turn on the computer, or an eruption of yelling and/or crying which leads to referee duty, as noted above.

And finally, there's that time difference thing. Most of my relatives are in southern New England, and I'm in Kansas, where everything happens an hour earlier. (It's true: primetime television starts at 7 pm instead of 8 pm, and there is no 11 o'clock news, it's on at 10 pm. This is contrary to the clock I was on for the first 24 years of my life.) A good time for me to call Massachusetts or Rhode Island is the time when they're having a meal or about ready for bed. It's only an hour, but it can really complicate things!

I had a blog on my MySpace page, but there, people can only see the most recent entries unless they log in. Most of my relatives and "real life" friends have no desire for a MySpace account, and I completely understand that. (Also, I can't access MySpace at work, and spend very little time there now - especially since I found LibraryThing last summer.) At the same time, it would be next to impossible for me to send separate e-mails and letters to all the 50-odd people who get our annual update, letting them know what's going on in our lives, say, every month or six weeks.

So, I finally decided to sign up for a Blogger account and make this a tool to provide friends and family with semi-regular updates about our lives. It'll also be a place for me to - hopefully - stop for breath, record what's going on in my head, and reflect upon it. That's the plan THIS month, anyway! ;-)