Update

Wow. It's been a long time since I've posted, and so much has happened. Some of it is good stuff: I got to go to Europe with Mitchell for a choir trip, and it was an amazing experience. The countryside in Switzerland is the most beautiful place I've ever seen. I miss it. Since some of my ancestors are Swiss, I wonder if there is some sort of genetic pull there for me. It reminds me of a dream I had of Heaven, and I told Alan I'd like my ashes to be set free in the foothills of the Swiss alps.

Another highlight of my summer was Isaac finally learning to ride his bike and then pushing his dad and me to go riding with him nearly every day. I didn't go as often as Alan did, but I truly enjoyed the times I did go. Twice we went to Minto Brown together and had a wonderful ride in the sunshine. We also went to an area closer to our house with a lot of bike trails. It used to belong to Fairview, an organization that works with people with developmental delays. It was closed and the property purchased by a developer. Unfortunately for the developer, the economy has led to a lack of sales. Fortunately for us, the roads and bike trails are all paved, yet the population is so low that we usually get to use them by ourselves.

After my last post, we finally got a diagnosis for my mom. It's Lewy Body Dementia.
For more information about this disease, go to  www.lbda.org.

I'm still plagued with doubts. What if it's not? What if she's simply overmedicated? What if it's something curable? But we've explored all those avenues, and the specialists all tell us that there is nothing we can do except try to slow it down with medication and wait for the end. I've struggled with depression since May. It's a hard diagnosis to face. It's the second most common dementia after Alzheimer's, but it's more devastating. Not only does it kill sooner, but the end is drug out and exceptionally hard on the families. If it follows its normal course, Mom will become hostile and have hallucinations. So far that hasn't happened, thank God. She'll lose her ability to walk and to bathe and dress herself. She'll probably need to wear Depends and be changed and cleaned up by her care takers. In the very end, she will choke and possibly vomit when eating. She may not be able to speak or if she can, she may not recognize us. All of that is going to be too much for my dad to handle who is in poor health himself. Will she go to a care home? Will I have to quit my job to make sure she's cared for properly? Will dad be able to live alone, or can he go with her? So many unknowns.

Soon after we got that diagnosis, dad's heart rate and blood pressure became so low that he had to go immediately to the hospital and had a pacemaker put in. I left for Europe soon after that. Three weeks after I came home, on August 2, my brother-in-law Lynn died unexpectedly in his sleep. My sister needed a lot of help after his death (and will probably always need help in different ways--yardwork, financial, car repair, etc.). Her friends and church and other relatives helped in the immediate aftermath, but I'm not sure how much longer others can help her. I worry about the stress it places on my dad because he's trying to do as much as he can to help her now that Lynn is gone. But before that, Lynn was helping Dad with his yardwork. I feel like there is now too much need in our family and not enough strength/time/money to meet all the needs. It's stressful, to say the least. We're out of balance.

God is good. I claim that. I believe that. Despite my circumstances, I have faith that God will provide and equip me and others to persevere through this time. Mom used to tell me that when the hard times come, God gives us resources we didn't know we had. I trust she's right about that. Faith is a good legacy to have.

Shout Out to My Aunts

If it weren't for my Aunt Mary and Aunt Lorene (Mom's sisters), and Aunt Ruth (Dad's sister), I don't know what I'd do. They have taken my parents to appointments, to pick up prescriptions, and to get groceries. They've brought food and had them over for dinner. They've taken Mom to the movies and have spent hours in the hospital with them. I haven't had to do grocery shopping for my parents the last two weekends because my aunts beat me to it! These women have been a huge blessing to me these past weeks. They make me feel like I'm not alone.

An update on my mom: We took her to the Salem neurologist, Dr. Wynn, last Monday. We told her we had seen improvements since he'd done her spinal tap in the hospital. He was skeptical until he asked her a few questions and had her walk for him. He said the changes were obvious and thought it was worth putting in the shunt; however, he'd like us to get a second opinion. He suggested OHSU. We told him we had an appointment there on May 27, but we thought it was too far away. He agreed and said he'd contact the neurologist she's scheduled with to see if we can get her in sooner. He was very positive about her neurologist up there, Dr. Quinn. He said we can't ask for better. He knows him from medical school.

The Guilt Trip

Isaac's school auction is coming up a week from tonight. Some stay-at-home moms whose children attend Sonshine have been working hard on it. I appreciate their hard work. I want to be supportive. I was the first or second parent in Isaac's class to donate items for the themed basket they plan to auction off. However, I keep seeing requests to volunteer and reminders to order tickets. I feel obligated to do so, but I know that life is too crazy right now to commit to much more than doctor's appointments. I decided that I would buy tickets the day before the auction if it turns out that I can go.

Anyway, today one of the auction coordinators asked me to order tickets when I picked up Isaac after school. I told her that my life is pretty insane right now. She responded, "Yes, I know. Mine is too." I thought to myself, "You may think you know, but lady...you have no idea!" I don't know her, so I didn't want to go into why my life is insane. But I resent her comment because basically, she was saying (in my interpretation), "Yeah, right. We're all busy. Look at me--I'm doing all the work here. You're just a slacker."

I wonder if she has to clean two houses and grocery shop for two households every weekend.  I wonder if she has to plan and prepare low sodium/low saturated fat/low vitamin K/low cholesterol meals for her parents several times a week. I wonder if she takes both of her parents to their frequent doctor appointments. I wonder if she has to pick up prescriptions and run other errands for her parents in the evenings. I wonder if she goes to 2 different churches every weekend--her own on Saturday nights and her parent's on Sundays. I know she doesn't work full time or have a busy teenager to run around.

I hope I don't sound like I'm whining. Life is insane now, but it will ease up in another 2-3 weeks. I just am a little sensitive right now to any implication that I'm a slacker. Two of my close friends (Dana and Jenni) want me to join them for dinner that night. You know what? I believe I will.

I Fall Apart, but It's a Good Thing!

The Wednesday before last I took my mom to her general practitioner to ask about normal pressure hydrocephalus. I asked to speak with the doctor privately. I pretty much cried through the whole discussion. I asked for a neurologist to look at the MRI, specifically looking for water on the brain. I asked for a spinal tap. The doctor basically told me that I just had to wait until her appointment at OHSU on May 27. She didn't think a spinal tap was warranted, and she was confident that if there was water on the brain, it would show up in the MRI written report. I told her that I could not wait until May 27--that Mom could be dead by then. I said I was taking her to the emergency room. She said that they wouldn't help me so not to bother. I told her one of my closest friends is an ER nurse (Dana) who has been trying to get me to bring her in since November. Dana told me that if I brought her to the ER, a neurologist would see her right away and run all sorts of tests on her to find out what is wrong. Dana was working that night. When I told the doctor this, she agreed to admit Mom but still said that she wouldn't order a spinal tap; the neurologist would have to do it if he found it warranted.

Long story short, the neurologist DID see signs of NPH and performed a spinal tap, removing several vials of cerebral-spinal fluid. He said that if it is NPH, she'd improve in a week or so. We do believe that she has improved. She is more animated, talks more, responds faster to questions, has better eye contact, and seems to walk better. Of course, the changes we see may only be our imagination fed by hope. But my aunt noticed improvement, and she didn't even know that fluid had been drained. We take her back to the neurologist on Monday. Hopefully he'll decide to insert a permanent shunt from her brain to her abdomen. The fluid will drain regularly that way and be eliminated. This procedure has had a lot of success in helping people to recover at least some if not most of their previous level of function. We have hope. That's more than we had a month ago.

The Tattle Tale

I've been trying to impress upon Isaac the need to use a napkin instead of the front of his shirt to wipe his hands when eating. I realized he only got half the message the other night when we had this conversation:

Isaac: Mama, I've got to tell you something. Mitchell wipes his hands on his pants when he's eating potato chips.
Me (in mock horror): NO! That's terrible!
Isaac: Not me, though. I just lick 'em.

A Little Moment of Grace

I wrote about breaking down in tears in the first post while I was cleaning out my parents' refrigerator, but I didn't tell you the whole story. During that moment of despair, I felt utterly overwhelmed by the future before me. It looked as though the remainder of my "youthful" years would be spent in taking care of other people, and well, that's probably true. I imagined that when I'm finally released from my care taking duties, I'll be so worn out that I'll have a stroke or heart attack and die young or at least be debilitated. The thought was so heart-breaking that I just had to have a good cry. I began to pray during this little break down, and that's when God clearly said to me, "But my daughter, it's in this place of brokenness that you'll see me. Your life of abundance is just beginning. Just wait and see what I will do." No, I didn't hear an audible voice (I never do), but I know God is speaking to me when the thought I get is one that I'm not capable of having independently. I'm too selfish and shortsighted for that thought to have come from my own mind. And the peace of God that passes all understanding took over from there.

My Mom is a Zombie, but She Doesn't Want to Eat Me

My mom is like a zombie in many ways: She has very little facial expression now, but just stares straight ahead. Sometimes when people are talking with her, she won't even look at them. She's hunched forward and walks very slowly and stiffly. She can answer questions very briefly but doesn't initiate conversation very much at all. For being a zombie, though, she is still very sweet. She doesn't want to eat me and, in fact, shows no violent tendancies whatsoever. She just watches TV all the time. I don't mean to make light of her condition, but "zombie" is the most accurate picture I can provide. And without some humor, I will lose my mind.

My "real" mom isn't this person at all. My real mom should be planning elaborate parties with delicious food and even costumes. My real mom should be traveling to Europe, dragging my dad with her. She should be canoeing on a lake and hiking in the woods. My real mom should be taking an art class. She should be planning a family Easter dinner and egg hunt for my younger son Isaac. If her house is messy, it should be just because she's been too busy to clean it. My real mom should be preparing her garden to grow a plethora of strawberries, tomatoes, and zuchini. She should be taking her grandchildren to plays and concerts. This is the woman I grew up with. This is who she was until some vague time in late 2008. That seems to be when things started to change. Now I don't even know her anymore. Sometimes she'll look at me and smile, or she'll laugh at something funny Isaac says or does. Then I'll see my real mom for a moment, and I'll think to myself, "Ah, there she is!"

"They Are so Lucky to Have You"

I have heard this a few times this past week from people who are impressed that I'm caring for my parents during their health crises. It always kind of surprises and saddens me. Every aging person should have someone who cares enough about their welfare to help them, but so many have no one. I don't necessarily feel like I "owe" it to my parents because that makes it sound like I'm a reluctant helper. It's more like a great opportunity that I have to return the love and care they gave me as I was growing up. So really, my desire to help them speaks mostly to how great they were as parents when I was young. You see, I was so lucky to have them. What was so great about them? I'll just list some highlights:

1. They both had high expectations for me and raised me to believe I could do anything I wanted to with my life.
2. They spent time with me--reading to me, playing with me, taking me places, watching my "performances."
3. They loved me even when I was unlovable.
4. They taught me not to harbor prejudices or see people as stereotypes.
5. They raised me to be (mostly) independent. (I still haven't changed my own oil or tires or mowed the lawn).

My sister is very different from me but equally loved. She helps as much as she can but has less "flexibility" in her work and family than I do. They are lucky to have her, too. So am I. My goal is to give my boys the same kinds of love my parents gave us, even though they are very different from each other, too.

Dad is Home, but I'm Not

My dad came home from the hospital Monday (today is Wednesday). I've spent the night at their house since then and will continue through Sunday night. Isaac is staying with me since he doesn't have school this week and this way, Alan doesn't have to worry about getting him up and dressed and over to me in the mornings. Isaac and I have been sharing a double bed. He grinds his teeth in his sleep, over and over. His dentist told me she could tell he was a teeth grinder, but I had no idea it was this bad! No wonder his baby teeth are worn down to nubs. He gets two more pulled tomorrow for a total of 8 in the past month! One for each year of age. Poor little guy. But now his permanents can come in. Maybe when that pressure is off his gums he'll quit grinding.

I got to come home for a few hours this evening while my sister stays with our parents. Mitchell came home from Santa Fe today and arrived to our house just a few minutes ago (it's 7:30 at night now). He has to leave for choir tour at about 7:00 tomorrow morning. I need to wash a few loads of clothes and help get him packed for tour before going back to my parents' house tonight. In the morning, my aunt will come stay with my parents so that I can take Mitchell to meet the tour bus. A friend from my parents' church will come a little later in the morning so that I can take Isaac to the dentist.

Dad's really not that bad off now. The home health nurse came today and said he's doing great. It's just that if Mom needs help, he can't do much for her right now. We just never know from day to day how bad she'll be. Sometimes she falls down and has trouble getting back up. She forgets her words. She has trouble talking on the phone. Today she said she needed something new, but all she could do was indicate with her hands what she was looking for. She finally described it as "A thing to wipe down the aisles." What she meant was a squeegie to wipe down the shower walls.

We do have a bit of hope. Just the tiniest sliver that we're trying not to let get too big in case we're later disappointed. My sister knows someone with normal pressure hydrocephalus, and the symptoms sound much like Mom's. This particular condition is treated by putting a shunt into the brain to drain off the excess fluid into the abdomen where it can be absorbed. If found early enough (that might be our downfall), she could return to normal. It's too good to be true. I so desperately want to hear that this is the answer! I want my mom back!!! I called her doctor and made an appointment for next week to look into this.

Mom Is Acting Weird

I first noticed Mom acting "weird" over a year ago. She would forget why she'd just called me, she needed security to help her find her car in a parking lot, she stopped having the family over for weekly dinners, and Christmas 2007 she told me that when she went to the store, she'd forget what she came for. She also told me her thoughts kept swirling around in her head, and she couldn't get them to stop. She told her doctor she was having some memory problems, but he chalked it up to simple aging. She was 63. In June 2009, she forgot my birthday. The next day was my cousin's son's graduation party. She brought my birthday card to that event but forgot the graduation card. My birthday card was blank.

Later in the month, we spent a weekend together in the coastal mountains. She drove. It was terrifying. She tailgated at high speeds and didn't seem aware of the cars around her. She drove so fast that she fishtailed around curves along a cliffside on a gravel road. We shared a room in a lodge. She snored all night long. I didn't sleep for 2 nights. I talked with my dad, and he was concerned about her driving as well. We got her in to see a sleep specialist who diagnosed severe sleep apnea. She's been sleeping with a C-PAP machine ever since, but we've seen no change in her mental or physical state. If anything, she's worse. She may have sleep apnea, but it's not the cause of her symptoms like we'd hoped. We told her she can't drive anymore last July. We thought it would be temporary, but it's not. She used to pick up my kids from school for me. She can't do that anymore.

How Did It Get This Bad?

Why am I sitting at the computer when I am exhausted and should be in bed? My 76-year-old dad is spending his sixth night in the hospital following a valve replacement and quadruple bypass. My 66-year-old mom is getting ready to go to bed in my youngest son's room since she can't be left alone. My youngest son (just turned 8) is downstairs playing Wii with his dad, but in a half hour, he'll be taking his bath and then going to bed in his big brother's room. My oldest son (17) is in Santa Fe with his dad and stepmom. Today I took my mom home to my house where my husband and youngest son could keep an eye on her while I went grocery shopping in anticipation of my dad getting out of the hospital. It took a long time to look at the fat and sodium content on every label. I then took it to their empty house and opened their fridge. No room for anything! I started moving things around and grabbed a bag of tortillas. They were so hard that they would have shattered had I thrown them against the wall. Hmmm....better look further. Yep, there's a margarine container in the back on which my mom had carefully written "Sauteed Mushrooms September 2009." It's now March 2010. I open it. The smell of the rotten, now-liquified mushrooms makes me gag. Two garbage bags later, I'm done cleaning out the fridge. Some dairy items expired 3 years ago. How did it get this bad? I just cried.