Ten

 It's been ten years since my mom died.  Here's what I texted to my immediate family:

Today is the ten year anniversary of the death of our beloved matriarch.

First of all: I can't believe it's been that long.

Second: ten years has not dulled the pain of that loss. 

Third: I am grateful to have had her as long as I did.

Fourth: I know I don't grieve alone.

I made an apple cake this morning.  I'm going to take a chunk over to Grampy and Walter later.  I'm not sure if they are marking the occasion but I am.  I need a little bit of acknowledgement of our profound loss.  Not sure I'll get it from them. But, in my heart, we are all united in singing her praises, telling funny stories, and keeping alive her memory. But that's just in my heart. Mostly likely I'll be celebrating her on my own. But, I WILL celebrate the amazing person that was my mother.

(Steps off soapbox)

Xoxox  xoxox  xoxox'

#

To their everlasting credit, they all responded to my text immediately.  It's true that I don't suffer her loss alone.  We all feel it.  We all mourn her.  I guess there is a comfort in being able to share a memory of someone dear with a person who knew them.  Some kind of shared spark of memory.  A connection.

Ok, well, I'm going to get ready to go to my dad's.  See ya!

Bittersweet

She who hasn’t tasted the bitter, doesn’t understand the sweet.

Or something like that.

I’m sure you’ve read or heard that one before, I certainly have.  It kept running through my mind last Sunday, Mother’s Day. 

Sweet, yes, because my daughter drove down for a quick visit.  It is always a welcome and restorative occasion when the Kid comes for a visit.  Her leaving can send me into a minor tailspin, but not so much that I don’t want her to visit.

Bitter, because Mother’s Day without your mother is sad.   It just is.  I miss my mom.  I felt so aggrieved and sorry for myself with all of the FB postings of friends getting together with their moms.  Jealous.  Pitiful.  Orphaned.  I did post something about missing my mom, and several people agreed and commiserated.  And, I reached out to a friend whose mother died more recently than mine and let her know that I was thinking about her.  But, still… 

It’s now the Wednesday after Mother’s Day and I should have bounced back by now.  But, it’s gray and rainy and my job is a mess and my apathy is growing exponentially.  I don’t know if I need to give myself a stern talking-to or let myself wallow in the emotions.  Well, I’m not really wallowing.  But I’m not trying to dig myself out, either.  Somewhere in the middle, I guess. 

Last week, my therapist suggested that we start working on a big issue that I have been avoiding.  The issue of self worth, of the yardsticks I use to measure myself by, of my persistent belief that I have achieved nothing of worth or value, of my certainty that I am a disappointment to my self and family.  I have no way to reframe those judgments in my mind.  I look at myself and my life and see nothing of note, nothing worth writing home about. 

I guess it’s time to work on that.  It also feels bittersweet – or maybe just bitter.

My apologies for such negativity; I’m feeling down today.  Probably not the best time to be posting…

Rebound

Here's the strange thing: my mom is holding on.  I don't know how or why or what is helping her, but after a couple of days that were absolutely dire, she has rallied.  She is out of bed, walking with help, drinking tea, and combing her hair.  We thought that the end of this week would probably be her last, but she has surprised us all.

But... and it's a big but ... there is a booklet that the hospice folks gave us that outlines the final days.  In it, there is talk of a period where the dying person has a rebound and seems almost like their old self.  I wonder if that is where we are now.  

Another strange thing is that during that bed-ridden, excruciating couple of days, mom was very lucid.  She answered questions directly, she had things to tell each of us, she let us know when the pain was unmanageable.  Now, she has slipped back into the random, unconnected (in our minds) monologues, and is disassociated with reality.  I don't know what to make of that.

One thing that I believe helped her was the knowledge that Zoe was coming.  I called Zoe a day or so after the nurse said it would be the end and asked her if she could come for one last visit.  She made plane reservations right away.

I have been at the parents' house for the last ... what, 3 or 4 days/nights?... I'm not sure, at this point.  But, last night I felt as if I could sleep in my own bed with no worries about the night or the morning.  My dad promised he would call if they needed help.

I'm on my way back over there to sit with mom while dad has his nap.  After that, I'm actually going to go to work for a few hours, while Zoe takes a turn hanging with her Grammy.

Zoe can only stay until Sunday.  I don't know what to expect once she leaves.  Oh well, there's just no way of knowing except to live through it.

Near the end

I am sleeping at my parents house now.  The hospice nurse says we have a week or so.  Mom is sleeping a lot, but when she is awake she is often quite restless.  We had a morning of good lucidity today, although it began at 4am, we'll take it whenever we can.

Pop and I were able to help her to the bathroom, which she much prefers over the other options.  Well, who doesn't, right?  She also had a half a cup of tea this morning, which we consider a fantastic accomplishment.

I have dashed home for a quick shower and clean clothes.  I've answered some emails and thought that I would post this brief update.  I would update more, but my parents computer is a relic and I haven't even tried.

Thank you, all, for keeping us in your thoughts.

Words to live by

Do not dwell in the past,
Do not dream of the future,
Concentrate the mind on the present moment.

Buddha

I'm working on just being present.

Good days and not so good

It's been a rough month.  It's been up and down, but mostly down.  The shocking thing is how quickly Mom is getting worse.  She makes very little sense.  It's all sentence fragments in a stream of consciousness monologue.  Sometimes there is a theme.  Tuesday was her Uncle Chalmer.  Wednesday was Cousin Debbie.  Today was Lisa and Sybil.  Knowing who she is talking about is helpful.  Makes it a tiny bit easier to follow.

There are some funny things, though.  I mean, you have to laugh or else you cry.  Today she said as I sat down and untied my shoes, "Yes, sit down and take off your trees."  And later she asked me, "How many were staying here while you were dancing on your head?"  I guessed 3.  I mean, what can you say?

My new schedule is this:
Spend the morning, from about 9 to noon, at the parents house.  This gives me time with my mum while she is fairly rested, and importantly, time for my dad to take his morning nap.  It is essential that he stay healthy and rested.  I've been doing this for a week or so, and he looks much better.
Work from about 1-ish to 8 or 9 in the evening.
Go home, sit in front of the tv for a few minutes, go to bed.
On Saturday and Sunday, just take out the work part.

It's not just that her mind is going.  She is also physically very frail.  Some days she can get herself up and walking, but mostly not.  She is pretty teetery, too, so there is the constant fear of her falling.  She has fallen, but so far no serious injury.  One good thing is that they put her on a steroid and it has increased her appetite. She was at the point of eating a couple of bites of toast a day and that was it for her caloric intake.  Now, however, she is eating an entire piece of toast for breakfast and sometimes having part of another one.  Wow!  She will eat a little lunch and a few bites of dinner, but that's about all.  Still, it's keeping her going.

I've told her what a wonderful mother she is, and how lucky I feel.  I tell her every day that I love her.  I can't ask her any big questions any more, though.  Interpreting the answer is so difficult.  One thing that makes me happy is that sometimes, while she is telling some incomprehensible story, she'll shake her head and chuckle.  Laugh at some fleeting memory, and then sit quietly with a smile on her face.  I like that.

Feeling good

I made some delicious beef stew for my parents and took it over last night.  Yes, I know that summer is not beef stew season but remember, we live in the Pacific Northwest and it is not summery here.  So far this year we have had temperatures over 80 degrees just 3 times.  It's cool and breezy right now.  Plus, comfort food is satisfying in all seasons.  The stew is one of my few tried and true, reliable, great tasting meals.  I am not a cook. But, that's ok because my mom is not much of an eater.  She does love my stew though.

While I was there, my dad gave me the run down on the latest visit to the doctor.  Actually, they visited the Nurse Practitioner.  It was very encouraging!  My mom is feeling much better, and her oxygen saturation is staying well within the normal range.  I think the pneumonia is finally resolving.  Also, her inner ear thing (infection? something?) must be better as well, because her balance is much better.  She was feeling pretty perky last night.  That made me feel better.  Oh, and this: the NP told them that they have a couple of patients who have been in hospice for 3 and 4 years.  That made us all feel better.  My dad said, "Let's plan Christmas!"  Smiles all around.

Just so I could feel useful, I ordered one of those fancy walkers with a basket and a seat and bicycle style brakes.  You can get anything from Amazon!  It should be arriving today or tomorrow and I think it will really help my mom with her mobility.  She tires easily but still wants to be out and about.

All of this gave me a really good feeling yesterday.  She may not have as long above ground as I want, but she doesn't yet have a foot in the grave.

Hospice

I got a call from Raymond at the hospice office yesterday.  Unfortunately, he called my home number and not my cell or my work (both of which he has).  He left a message and said that it was not an emergency, but to please call him back.

I called the hospice office as soon as I got home.  Raymond had left for the day, but the gal on the phone explained what was going on ~ at least, somewhat.

It seems that when a patient is enrolled in hospice care, one of the first things the program does is order liquid morphine to be delivered to the patient's house.  This is to ensure that unmanageable pain is treated whether or not the patient can be seen right away.  Well, that's good.  Why the hell should she suffer as she is dying, right?

But, the question the woman couldn't answer was, why did Raymond call me?  Were the parents out of the house?  She didn't know.  She just wanted to be sure that we knew that the pharmacy would be delivering the morphine that afternoon.

I called my parents and let them know.  It seems that Raymond had called and my mom had basically told him to bugger off.  She didn't know who he was and she didn't have time for him.  She told him that she wasn't interested and hung up on him.  He called back and she told him to stop bothering her.  I guess she thought he was trying to sell her something.  Sigh.

At any rate, it got sorted out and there is now a bottle of liquid morphine on the mantel.  The nurse has called and given instructions as to its use.

Here's something else, though.  When I was talking to the woman on the phone, her tone of voice and phrasing were creeping me out.  She is clearly used to talking to people who are in distress, but I was expecting more of a matter-of-fact tone and not the unctuous sympathy and hushed voice that I got from her.  It was a little weird.

Vascular Dementia

The lack of oxygen to the brain is a serious problem.  Whatever the reason for the lack of oxygen, the result is not good.  In our case, a softball sized tumor in the lung is pretty much blocking the efficient flow of oxygen, and has been for an unknown period of time.

Dementia, however, is kind of the same whether it's vascular, Alzheimer's, or any one of the other dementias, especially the age related kind.

Weese, if you are reading, I thought about you last night.

I was over at the parents house, they had just finished a light supper of blintzes.  We were talking about how my martial art school looked better after a recent coat of paint.  At that point my mom said, "Well, I remember when you told me that the rabbits were really loud at night."

Umm.... ok.

I said, "We don't have too many rabbits over there, but if they keep you awake, let me know."

What is it about rabbits?  Weese, didn't your mom have a rabbit thing?

Wishing

Like many people, I grew up wishing on the evening star.  You know, “Star light, star bright…”- that wish.  I suppose when I was very young I wished for the kind of things that children wish for, like a puppy or a pony or a new toy.  I don’t remember those wishes.

From the time I was about 8 or 10 years old though, my wish was almost always for the same thing.  I wished for my parents to have a long and happy life.  I don’t know why I started wishing that.  I think it started when my maternal grandfather died.

I didn’t know my mom’s father.  I had met him twice, maybe three times.  He lived in Ohio and we lived in California.  It was a much bigger deal to fly across the country back then.  And, none of my family had money for that extravagance. 

The day we got the call that he had died, we were at our cousins’ house.  My mom’s sister’s house. It might have been someone’s birthday.  My mother and all of her siblings loved their father best.  Their mother was whiny and petulant (in retrospect I believe that she had a hard menopause), but their father was their champion.  He was the kind of dad who played with his kids, who was very fair and just and kind and loving.  He worked hard and loved them all and they knew that and felt secure.

My mother and my aunt fell to pieces when they got the call.  Their dad worked for the railroad at the time and had been hit by a train.  Later, the railroad tried to say that he had had a heart attack and fell off one of the cars, but in the end they settled with my grandmother and awarded her a miserly pension.

The pain, the crying, the despair, were overwhelming.  I had never seen my mother cry like that.  I had never seen my aunt cry at all.  They were strong young women with husbands and children and in an instant they were bereft little girls sobbing in despair.

I cried too.  I cried because it was sad that my grandfather had died, but mostly I cried because my mom was crying.  I sat in the front seat with her on the way home and she held me and cried.  And cried, and cried.

My mom was devastated.  I don’t know how long it took her to come to terms with her father’s death, but I think it was quite a while.  It worried me.  I worried that my parents might suffer some bizarre and tragic fate.  I was preoccupied with it at times, worried that my brothers and I would be left in the care of others, to be raised as poor relations.

Mostly, though, I couldn’t bear the thought of being without my parents.  I have the best parents in the history of parents.  I couldn’t bear the thought of them being dead and gone.  I couldn’t imagine how that could be.

And so, I wished.  I wished on the evening star every time I saw it.  I wished whenever we crossed a bridge and held our breath and lifted our feet off the floor.  I wished on birthday candles.  I wished on dandelions.  Any opportunity to make a wish and mine was the same.  “Please let my parents have a long and happy life.”  Always the same.  Always that need for the security of my family.

And now, that evening star has let me down.  My mom has been happy but she is only 75.  I don’t feel that she has had enough time.  When I wished for a long and happy life I was thinking they should live to be 100.  That’s long.  75 is medium.  It’s not enough.  I’m not ready and she’s not ready.  I feel like I am being robbed of 25 years of happiness, or my mom is. 

What was the use of all that wishing?  All of that focused energy directed to a specific outcome?  What good was it?  It served no purpose.  I am losing my mom too soon.  Now I am the bereft little girl, crying and wanting to say, “Don’t take my mama!”

I suppose that eventually I will be grateful for what I had.  I suppose that comes with time.  I hope so.  My mom is my best advocate, my champion, my fierce defender.  Nobody picked on Kathryn’s kids, because they could not take the wrath of my mother.  Who will be my defender now?  Who will stand up for me and defend me and believe in me?

Yes, I will still have my dad.  He is the other half of that equation.  I’m counting on him.  The thought of him without my mom is strange but he must carry on.  We need him.  My brothers and I are still their children.  Even at age 52, I still need my parents.

I don’t know if I’ll bother to continue wishing on that star.  It hasn’t helped.

The News

Well, it ain't good.

Stage 4, spread across the midline to both lungs, metastasized to the adrenal and lymphatic systems.  Surgery is not an option, radiation is not an option, and the oncologist doesn't think that chemo will be worth the risk.  The chemo won't significantly increase the length of her life, and will make her sick and weaker which could, in fact, shorten what time she has left.

And, what time does she have left?  He wouldn't give an estimate but said it would be measured in months rather than years.

I'm not ready to lose my mom.  Obviously I don't have a choice about that.  My choice is to see her every day and spend as much time as I can with her.

Damn.

What's new?

What’s new with me, you ask? Well, pull up a chair!

My mom is having a skin cancer removed today. I’m waiting anxiously to hear how it goes. Of course, the lab work won’t be done for several days and as we all know, the waiting is the hardest part. I’m actually nervous as hell, because she survived breast cancer a dozen years ago but still smokes. Stubborn old thing. I’m holding the good thought.

Last weekend I completed my apprenticeship as a self defense instructor. Yay! Whew! I am so glad that is done! It’s been a long two years, but I finished. So, what happens now? I continue teaching self defense, but now I get paid for it. There isn’t enough work for me to quit my day job, but my long term plan is to reduce my job to part time and teach self defense on the other days. We’ll see how that will play out.

My partner’s niece is moving in with us next week. I am deeply ambivalent about this, but on balance I know it’s the right thing to do. Still, what middle aged, retired-from-parenting, hard working, busy, menopausal woman would be jumping for joy over this? The girl has been living with her grandmother (T’s mom) for over ten years and while she was young it was an acceptable arrangement. Now that she is an adolescent, however, it’s not working. Grandma is tired and cranky. She is also nearly completely deaf. Oh my god, the shouting at their house! I can’t stand it. They are all loud talkers anyway, but now that their mom’s hearing has gone, it is just too damned loud.

Angela is fifteen and starting as a freshman this year. She is one year behind her peers chronologically, but many years behind academically. She definitely has a learning disability and has been in special ed for the last few years, but I have to disagree with the diagnosis on her IEP. They have labeled her as mentally retarded, but I think she needs to be retested. We have an appointment next week with the school counselor and will be able to ask all the questions then. She is currently reading the fourth Twilight book, so she isn’t “typically” mentally retarded.

It’s been a fair amount of work getting ready for her to move in. I’m giving up my sewing room/guest room. I took a week off work to clear it out and sort through stuff and I need another week to deal with it all. I didn’t realize we had so many blankets and pillows! The homeless shelters will be getting extra bedding from us. All of the other stuff is going to charity. Some things went to the basement to spend the next four years.

It’s just a lot of change. We’ll manage, of course, but the selfish part of me wants to say NO. I’m overriding that part and doing the right thing, but I’m still ambivalent about it.

Race for the Cure

This Sunday is Race for the Cure day in Portland. I’ll be there with my girlfriend and, thankfully, my mom. My daughter will be sleeping in for the cure, in Des Moines.

Ten years ago, maybe eleven now, my mom was diagnosed with ductal carcinoma. Her primary care doctor scolded her for not getting a mammogram that year and insisted that she do so in the following week. Thank you, Dr Zelko! They found a tiny white speck on her films that, upon biopsy, was indeed cancerous. She had a bilateral mastectomy within the month.

The doctors had said that they didn’t need to take both of her breasts since the cancer was only on one side. She told them that she had no need for them anymore and to just take them both off. “Besides” she said, “odds are it will come back in ten years and I don’t intend to do this again when I’m in my 70’s.”

As they wheeled her into surgery, she sat up in the gurney, lifted her gown up in front and flashed my dad. She said, “Take your last look at heaven, buster!”

Her recovery went pretty well. After she was up and about she took to walking around the house topless. She told me that she was going to go do some gardening in the front yard without a shirt on. She said, “Hey! Men get to go shirtless all the time, why can’t I? I don’t even have nipples!” I told her not to be ridiculous, with her pale skin just imagine the sunburn she’d get.

Her chest is criss-crossed with scars. She loves how flat it is. She feels liberated without those fleshy appendages. She has encouraged me to get a bilateral mastectomy ~ preventative medicine, she says. I have ambivalent feelings about my breasts and always wish they were smaller. I don’t think the insurance will pay for that, though.

I feel so lucky to still have my mom in my life. She is one of my greatest champions, always fiercely defending her family, always helping us be the best people we can, always encouraging, protecting, enlightening. My dad is right there too. I was blessed to born into a loving family.

When we step out tomorrow and head downtown for the Race, we’ll be doing it at mom’s pace. We usually stroll for the cure. Some years we only go a few blocks and she says, “Let’s go get a cup of coffee and a pastry.” So we do. Of course we do. We’ll amble through the tents and vendor displays, we’ll get our souvenir scarf, we’ll mingle with the throng of women in pink and then we’ll go home and watch football and drink mimosas. I got some pink champagne for the occasion.