Silence

Silence is rare in this busy world of ours.  It's even more rare when small children are in the home.  I remember a day, probably 10 years ago when a friend of mine mentioned that she was having a cup of coffee in silence while her kids still slept.  Her kids were just a little older than mine at the time and I remember thinking, "Oh my gosh!  Will that actually happen to me someday?  Will I get a quiet cup of coffee again in silence?"  And I did.  And I have had many since.  And I'm having one right now.  And the silly thing about it is that I do love the silence, but I am always amazed at how much I miss the noise of small children.

There's a lot of silence in my house these days.  I have teenage boys.  My life does not completely revolve around them anymore, nor does theirs revolve around me.  My oldest will be 15 in just a few weeks.  I am quite aware that he is just three years away from 18.  The first three years of his life went by in a blink of an eye, I know these next three will likely go even faster.  I have a desire to cling to him.  To hold on.  To beg him to stay with me.  Just like he did as a toddler any time I left to go somewhere.  How the roles have been reversed.  The child who I called my "velcro baby" now won't even give me a hug.

I'm sure my parents felt the same way.  I look at my dad these days and I immediately am transported back in time to the man I grew up with.  The man with the big smile and the boisterous laugh.  That man is lost behind the mask of Parkinson's disease.  His laughter has been silenced.  I know I'll never hear it again, but thankfully, I can still hear it in my head.  The roles are reversed here too.  I am now the protector in this relationship.  My dad who always made me feel safe now needs others to keep him safe.  

Thursday morning, as I was preparing to make a phone call to the vet, I received a phone call from a nurse at my dad's assisted living community.  She told me that when they delivered my dad's 8:00am meds, they found him on the floor next to his bed.  As the story has developed, it seems that his feet got tangled in the sheets and he fell out of bed early in the evening on Wednesday night and laid on the floor the entire night, yelling for help.  It makes me sick to my stomach to even write any of this because I cannot believe my dad had to go through that experience.  Alone.  In the dark.  And being met with silence.

Something happened to my dad's mind during that fall.  He has been much more confused the past couple of days.  I have had long talks with the nursing staff.  They have seen it too.  His "watch status" has been increased.  He's being checked on every hour during the day and now has a minimum of two checks during the night.  I am incredibly grateful that he is in assisted living now as I can't imagine what we would be going through if he was at home alone.  We moved him at exactly the right time.

My dad and I spend a lot of our visits in silence.  I used to feel the need to fill the space with a lot of mindless banter.  I don't anymore.  We just sit together.  Yesterday, when I said good-bye to him, his eyes teared up and he said, "Thank you for everything."  I told him, "I'll always be here for you dad."  And he said, "I know.  You're a good person."  

I am a good person. I'm okay with saying that.  However, I'm not good for everyone all the time.  In caring for my dad, I feel I've become less of a good friend and a good wife at times.  But certainly, the person who gets the least amount of attention is myself.  I know this is not healthy and I'm working on changing that, but it is not easy when there is always someone else to take care of.  I am a caregiver.  I always have been.  I will always have someone or something to take care of in my life because I call that to me.  And perhaps it makes me feel important.  It makes me feel that I am supposed to be in this world.  But I'm coming up on 45 years old.  I told Olly last night that I'm likely well beyond middle-age for me.  My mother died at 73, my dad is 76 and I'm not sure he'll make it to 80.  My grandparents all either died in their 70s or 80s.  I don't have a 90-year life span in the couple of generations before me.  And if I don't start taking better care of myself, I will just cut down my own lifespan.

And so, in the rare moments of silence, I reflect.  Over a quiet cup of coffee, alone in my house, I listen to the silence.  The only sound right now is that of the keyboard as I type these words.  The early morning air is blowing through the kitchen window as another beautiful late summer day begins.  I have the entire day in front of me.  I will make a trip to see my dad, but there is no one else to care for today except myself.  I have work and school to attend to, but will make time for a workout and ideally some sort of enjoyable activity in there as well. 

I felt a little sorry for myself this morning as Olly left because, once again, I am stuck at home with school responsibilities while he goes and has fun.  My boys are at their dad's house.  And this house is still noticeably missing Luna.  I feel her presence and still expect to see her.  But then am reminded that she's gone.  I didn't want to spend the weekend alone.  It has been such a long week with intense emotions.  But perhaps this is a lesson in mindfulness.  Today is about honoring myself.  Listening to the silence.  Hearing what it tells me.  I am an introvert.  I recharge in silence.  And I get very little of it.  Perhaps this weekend is my opportunity at a true recharge.  Perhaps this weekend is not a reason to be bitter, but instead, it is a gift. Ah...how I love the journey that comes with writing.  I almost always come out with some new revelation that I couldn't see prior to getting the jumbled thoughts out of my head.

In the almost 15 years since I have had children, I have very seldom been alone in my home, especially for an entire weekend.  Perhaps I am lost in the reality that there is no one here to care for.  Except myself.  So, this weekend I will work on my capstone project, I will get some work done, and I will spend some time taking care of me.  I will honor this silence and see where it takes me.

I Miss Her

I had a rough night last night.  Sleep evaded me.  I tossed and turned a lot.  I woke hungry with the realization that I ate very little yesterday.  This morning I am still hungry, but not much sounds palatable.

I miss Luna.  

Thank goodness for my night owl son who woke me in the early morning hours to tell me there were still candles lit.  Sheesh...Fire and grief shouldn't go together.  

I took some photos with my phone last night.  I'm going to post them here.  I thought about posting them on FB, but I figure if I post them here, people can click in and view them if they so choose.  I think they're beautiful, but I know not everyone feels the same way about death.  I think it's odd that there are not photographers at funerals and beside death beds.  Honestly, maybe I should do that work.  We take pictures at birth, why do we not at death?  We did last night...and these pictures will be precious memories of the end of Luna's life.

This is the pile of Luna's meds (and this wasn't all of them...some were all used and tossed already).

This was Luna after the tranquilizer set in.  The first dose of pain meds and sedative did nothing for her.  Her body was working so poorly that things weren't processing through her as hoped.  We were all feeling very stressed that Luna was not ever going to settle and we were going to have to take her out to the Vet's truck to get anesthesia through a mask.  We were both grateful and sad when the tranquilizer finally began to work.

Olly and Christopher and Luna

Lexa came at some point.  She sat in the window and pretended not to notice or care what was going on, but I don't believe that was true.  She was almost always in the room.  And this morning she is obviously upset and trying to figure out what to do with the way she feels.  At this point and time, she's taking it out on Lightning (our oldest cat).

This is Dr. Sue Preston.  She is one of the angels that walk the earth.  She is shaving Luna's leg in the hopes of getting a vein.  We're still not sure if it will work with as little as Luna's body is working and the chance of having to go out to the truck is still possible, but we're all hoping for the best here.  We kept all the fur that was shaved.  Parents keep the first locks from their baby's first haircut, why wouldn't we keep some of Luna's at the end?

Olly holding Luna's leg to help the vein pop while Dr. Preston's prepares to inject the final dose that will allow Luna to be free of this painful body.

She has the vein.  It's almost over.

The final injection.

She was gone within seconds.  Peacefully.

Christopher blew me away.  He insisted on being present the entire time.  I don't know if I could have done this at 11.  And I was so thankful that my kind-hearted husband cried openly tonight so Christopher could see that it's okay for men to cry.

Sweet, Sweet Luna.  Finally out of pain.

This is as close as Lexa got, but it was obvious that she knew what was happening.

Dr. Preston left us alone shortly after Luna had passed.  Olly, Christopher and I spent quite a bit of time with her and then I asked Christopher if he wanted a few minutes alone with her.  He said yes and Olly and I headed up the stairs.  I had to get this one shot from the top of the stairs before we left him in private.  I love this kid and his kind, compassionate heart.  And for the record, I love Jonathan for his strength of character and knowing what is okay for him.  He felt badly that he couldn't be part of this, but I assured him that there was nothing to feel bad about.  He and Luna had said their good-byes.  Over the past several days, I caught him talking to Luna many times.  He'd immediately get up and move when he saw me.  But he said his good-byes his way and I am incredibly proud of him for doing what was right for him.

Rest In Peace Sweet Luna

2007 - 2013

Good-Bye Sweet Luna

~ I started this blog this morning after making an appt with the vet to come put Luna to sleep tonight.  I wrote throughout the day in order to keep my mind focused and not to let it get overwhelmed and wander into places it shouldn't go.  I realize to some of you, this is all a little much.  To some of you, Luna was "just" a cat.  But to us, she was family.  And this experience opened up so many wounds inside of me that I now realize were not healed, but just scabbed over.  Nearly 4 years ago, I lost my mom.  Today, I lost Luna.  And though some people may not understand...the experiences were incredibly similar.  There are many lessons to be learned today.  I have promised that I won't let grief be silent.  I lived this day.  I didn't pretend it wasn't happening.  I lived it.  Every moment.  

Today Luna died.  

And this is the story of how I lived this day. ~ 

Last night we made the decision that we had to finally let Luna go.  I just got off the phone with the vet and we arranged for her to come by at 6:30pm tonight.

And now there is a clock ticking in my head.  Luna's life is down to 9 hours.  I'm nauseated.  My hands are shaking.  I have a pounding headache and the tears won't stop falling.  I'm going to leave this page open today and just blog randomly throughout the day as my own way of saying good-bye to this precious cat of ours.

The vet told me that I needed to be prepared for the chance that she won't be able to get a vein on Luna and will need to put a mask over her face to administer the medication to put her to sleep.  I am praying this won't happen.

10:30am - I go into Jonathan's room and sit down as I have for several weeks and administer more bad news.  This is the last time when it comes to Luna though.  I tell him the vet is coming at 6:30.  He shuts down and puts all his effort into not crying.  It breaks my heart.  And I do cry.  I don't hide my own emotions from him.  But he's almost 15 and is embarrassed to cry in front of his mom.  I expect it will come tonight, but for now I ask him if he wants me to leave to which he replies, "yes" and so I respect him enough to walk away instead of wrapping myself around him like I want to do.

11:00am - I go out to the fridge in the garage and manage to pinch my finger between the freezer and fridge door.  I yell, "Damn!" and then absolutely lose it.  I sob.  It's a recognizable sob that I haven't felt in years.  It comes from a place in my heart where grief resides.  It is the same sob I cried when the realization hit me, just days before my mom died, that I would never hear her voice again.  It is guttural and painful and comes from the cracks inside my heart.  Lexa, our youngest cat, comes through the cat door and tries to comfort me.  She hates when anyone in the family is emotional.  Thus, she has done a lot of comforting me over the years.

11:30am - Christopher has been awake for a bit, but I'm procrastinating on talking to him.  Ultimately, he comes downstairs.  I am sitting at the kitchen table.  I ask him to come sit with me.  The tears immediately start welling up in his eyes.  He knows what's coming.  We talk for quite a while.  We both cry.  He is wise beyond his years.  And so incredibly compassionate.  

12:00pm - I find myself in a weird surreal place where I am on Amazon searching for cat urns.  Amazon really does sell everything.

12:30pm - I finally muster up enough strength to take a shower.  It seems like too much energy as the anticipatory grief is sucking every last ounce of energy stores out of me.

1:15pm - I slowly pick up Luna from the floor and move her to Christopher's bed.  She immediately snuggles in.  She doesn't have the ability to jump up there anymore (she was always such an amazing jumper).  She came down last night to try and use the litter box we moved upstairs for her, but instead she went on the floor.  I know that has to be devastating for her because she has always been an incredibly clean cat.  As I move her, she smells my fingers.  I had just made a turkey sandwich for Christopher.  I run downstairs and grab some turkey and bring some to her.  She eats a bite or two.  It feels like her last meal.  Christopher and I look at each other and start to cry again.

2:00pm - I head to the grocery store.  Feeling odd to be running errands during Luna's last hours.  But we need comfort food...and wine...I need wine.  I hadn't had an alcoholic drink in about 10 years before my mom got sick.  Then wine and I became reacquainted   It's a crutch, I know.  But it's one I appreciate now and then with the stress in my life.  

2:30pm - While in the grocery store, I begin to cry in the cat food aisle when I realize I won't be buying Luna's favorite snacks ever again.  I loved our morning ritual when she would run downstairs and I would say, "Where are the snacks, Luna?" and she would lead me directly to the pantry.  I know it's these little things that will hit me a lot over the coming days and weeks.

3:00pm - I arrive home and I sit in my car in the driveway.  And I cry.  I look up at my windows and know I'll never see Luna waiting for us again.  

3:30pm - Christopher comes downstairs to talk to me.  As he is walking away to head back upstairs, I say, "Hey...come give me a hug".  I knew it's what he needed and he nearly runs into my arms and he sobs.  The same sob I cried in the garage this morning.  But it's his first time.  It's even more painful to hear it come out of him than it is to experience it myself.

4:15pm - 2 hours and 15 minutes.  That's what's left of Luna's life.  I'm sick with anticipation.  I want to call the vet and say, "Don't come.  Please, please don't come."  But I know I can't.  I pet Luna and tell her how much I love her for the hundredth time in the past few days.  

4:30pm - Christopher runs downstairs and tells me that Luna just fell off of his bed.  I run upstairs, she is lying on the floor.  He said she looked like she was trying to jump off and just lost her balance and landed on her back.  Christopher and I sit with her on the floor and cry.  This is hell.  But another reminder that we are doing the right thing.  This needs to end for all of us, but especially Luna.  I find it mildly ironic that I received an early morning call from my dad's assisted living community this morning informing me that when the nurse arrived to give my dad his 8:00am meds, they found him on the floor next to his bed.  He had fallen out of bed overnight and couldn't get up and couldn't reach his pendant to call for help.  What a helpless and terrifying night it must have been for him.  My heart is aching and in the midst of the pain, I also feel numb.  

The rain pours again today.  This morning I stood outside in it as the warm, summer rain fell on me.  It's been a long while since we've had this kind of weather.  It felt soothing and cleansing and appropriate for a day like today.  All the windows are open in the house now.  I don't care if water comes inside.  It's as though the clouds and the heavens are crying for Luna too.  But also preparing to meet her and to welcome her.  I feel oddly separated from, and connected to, the universe at the same time.  

Lessons.  So many lessons.  I know the universe is calling me to listen.  To learn.  

I know I'm well into middle-age now.  I know the older I get, the more grief will visit me.  I recognize grief.  It is familiar to me.  It is similar to that old friend who only comes around every now and then, but you easily pick up right where you left off.  I know grief is my friend.  I know the growth that comes with grief.  And I know that grief never truly goes away...just evolves and comes back around when it's time to visit again.  Yet, that doesn't make it any less painful when it appears.  

I know that grief is always a risk in love.  But I want my boys to know that the risk of grief is not worth giving up on love.  I know that I would never feel this grief without immense love and for that I am grateful.  I am grateful to Luna for loving my boys the way she has which is now causing heartbreaking pain as they lose her.  But they will never, ever lose they love she gave them.  It is a gift they will carry forever. 

4:45pm - 1 hour and 45 minutes left.  It's too close. Anticipatory grief, who has been living with us for weeks now, is preparing to leave as grief itself arrives.  

5:15 - Olly is in the car on the way home.  The clock is my head is ticking loudly.  My hands are shaking.  My breathing is rapid.  There is such a heaviness in my heart.  This is the closest I've been to a panic attack in 8 years.  I've got it under control because I've done a LOT of work on panic.  But that isn't stopping the panic from trying to break through all the defense mechanisms I have developed to keep it out.  I'll beat this one though.  Panic doesn't get to win today.  I'll take the grief, but not the panic.

So, I clean.  I take out all the garbage.  I throw out all of Luna's meds, but not before taking a picture of all of them to remind myself how hard we fought.  I busy myself.

And then I swing by the upstairs bathroom.  Jonathan is just finishing up a shower.  Waiting outside the bathroom door is Luna.  For as long as I can remember, she has waited for him after his shower.  They had a ritual.  He puts the wet towel on the floor and she sits on it and they hang out.  She's always liked wet towels.  She hasn't been outside the bathroom door for the past 5 weeks.  But today, she is there.  She can't scratch on the door.  She can't call to him.  So, I let him know she is there.  He opens the door and she goes right in.  She is telling him good-bye.  There is no question that she is saying her good-byes.

And here come the tears again...

5:40pm - Luna's time is down to minutes instead of hours now.  The skies have opened up here.  It is dark and wet outside.  It is definitely appropriate.  The news says there could be a tornado.  Of course there could.  The world should be upside down today.  Tornadoes in places that don't get tornadoes.  Luna is leaving.  Everything is topsy-turvy.

I find myself walking around the house lighting candles.  Apparently you can take the girl out of the church, but you can't take the Catholic out of the girl.  It seems instinctive.

Texts are starting to come in from people letting me know we're being thought of.  It warms my heart and slows my breathing.  The loveliest sentiments are sent to me on my FB page.  The world is a good place.

5:45pm - I realize I'm dehydrated.  I've had no water all day.  I guzzle 24 oz of water and feel remarkably better.  I find my Star of Bethlehem flower essence (it "softens the impact of shock, grief or fright") and I take a vial full.  

And I breathe.  It's down to that.  One breath in, one breath out.  That's all that's required of me right now.

6pm - 30 minutes until the vet arrives.  We all seem to want to be near Luna now.  The way she looks at us tells me she understands.  My back is aching.  I've always carried my stress in my back.  Trying to relax and let go.

It's strange knowing the time someone is going to die.  I couldn't help but think about people on death row and what the day of their execution must be like for them.  It's the only thing I can think of that could be similar to knowing your time of death...as silly as the correlation is.  I have to say...if I ever thought I wanted to know when I was going to die...I definitely don't now.  

6:45 - The vet is here.  Breathe.  In.  Out.  Repeat.

~~~~~~~~~~~~~~~~~~~~~~~~~

She's gone.  Luna is gone.  My heart is in little tiny pieces.  

Olly, Christopher and I were with her through the entire process.  There was no mask.  She went peacefully. The wonderful vet was so compassionate to Luna and us.  

Jonathan bravely chose to do things his way and stayed in his room.  At first apologizing until I assured him that he has every right to do this his way. I am incredibly proud of both of my boys for taking care of their hearts and making the right choices for themselves.  

And now grief is here.  Grief is living in my home for a while.  I didn't want this visit, but I welcome grief into my home as I know the lessons are important and enormous and powerful and necessary for myself and my family in different ways.  We all have a different path to walk through this process.  We will do it alone and we will do it together.  That's what families do.

Thank you to all of you who graciously held space for my family today and over the past several weeks.  Thank you to all the vets who were involved in Luna's care.  The past 5 weeks have been complete hell.  Now the healing begins.  It will be long.  It will be slow.  But we will heal.

Luna

When I sat down and started this blog, I originally envisioned a blog about Parkinson's and Caregiving.  I knew, of course, that some of the other aspects of my life would come out.  This is the blurb on the front page of the blog:

Steps in Silent Stillness is a blog about caregiving. It is a blog about Parkinson's disease. It is a blog about life transitions. It is a blog where I will share, vent, cry, rave and likely experience many different emotions. It is a blog about me and my dad and my family and my friends and my work. It is a blog about yet another life journey that I know others are on as well.

Well, here I am...in the middle of caregiving for my cat.  In the middle of another life transition as my family prepares to lose her.  And right now, I'm going to share, vent and cry, rave and definitely experience many different emotions.  This post is about me and my husband and my children and our current life journey.

This is Luna.  She is our CAT.  We have two other felines.  One who thinks she is a dog and one who thinks she is a human.  Luna has always been proud to be a cat.  She is quirky and silly and loving and aloof and everything a cat should be.

The bottom picture we have always called the "Luna Lay".  It is often with both front legs out as well and sometimes with the tail straight up in the air. 

She is our "middle child" cat.  She was added to our family five years ago when she was a year old.  The way she came to us is complicated, but suffice it to say, she was supposed to be ours from the beginning.  

She loves boys over girls.  She and I have always had sort of a distant relationship.  But we shared an enormous love for all the boys in the house and in that way we were connected.  However, in the past two weeks, she and I have bonded in a way only two females can do.  I understand her.  And she knows it.  

The above pictures make me smile and they make me sad.  This is not our Luna today.  She is gaunt.  She has no energy.  Occasionally, we still get a Luna Lay out of her, but not as often.  Most of the time she is sleeping or hiding out in a closet.  Too much stimulation bothers her.  

So, let me back up for a moment.  At the beginning of July, I started to notice a change in Luna.  She seemed sort of depressed.  Her normal routine had changed with the start of summer.  She's always been a creature of habit and I thought this was just an emotional reaction to the change.  But then things returned to more normal at the end of July, but no change in Luna and she seemed to be having a harder time eating.  Over the next couple of weeks, her weight loss became obvious and I made an appointment to take her into the vet on July 30th.  Luna hates being outside the house.  The car ride to the vet was terribly difficult on both Luna and me.  The vet kept her overnight which was also hard for all of us and after several different tests including an ultrasound, they found what they thought was the cause of everything.  Luna has a congenital defect that she has had since birth.  And we were referred to a surgeon.  

Olly and I had a moment of questioning whether we wanted to spend the money to do surgery, but it was a fleeting moment and we decided quickly that we were going to do what needed to be done for Luna.  She's only 6. She could have a long life ahead of her if this defect could be fixed.  

Luna and I met the absolutely wonderful surgeon on August 5th and he made it clear this is a rare defect in cats and that even if it could be fixed, there were many unknowns as to whether Luna could survive, but all the professionals believed it was in Luna's best interests to try as without the surgery she would certainly die.  And surgery was scheduled for August 8th.

Jonathan (almost 15) and Christopher (11) came with me the morning we dropped Luna off for surgery.  My stoic 15 year old began to cry and sobbed for an hour non-stop.  My 11 year old had been off and on in tears over this for days and this morning was no exception.  We busied ourselves during the day to keep our mind off the surgery.  At 12:45pm the surgeon called and said Luna was running a 105 degree fever they couldn't get down and we needed to figure out what was up before doing surgery.  And that night we brought Luna home with her 2nd round of antibiotics and a rescheduled surgery date of August 15th.

Luna was beginning to get frustrated with the meds.  You could see her fear every time Olly approached her.  It was heartbreaking for all of us but we believed it was all in Luna's best interests.

On the morning of the 15th, I took Luna in alone.  She was so very tired of her cat carrier and would bury herself under the towel I laid inside for her.  You couldn't even find her she buried herself so well.  I asked them to take her temp before dropping her off.  It was still a little high, but not as high as before and we all went about another day of waiting.  At 3:30pm, the surgeon called and I could hear he was upset.  He said Luna's fever spiked again and they ran some more tests to determine if she had some sort of infection.  I would need to go get her again and pick up new antibiotics.

Luna hated the new antibiotics and threw up the first two doses.  Back I went to the vet (on my own) to get something different.  By this time, the neurologist, the internal medicine staff, the surgery staff, the front desk staff all knew me.  They were incredibly compassionate to me and the situation we were all in.  I came home with new antibiotics and Olly gave Luna the one pill on Friday and Saturday night, each time with Luna becoming more combative.  On Sunday night she fought hard and hissed and tried to bite Olly which is completely out of character for her.  And in that moment...I knew she was done.  She was done with our games.  She was done with pills being shoved down her throat. She was done with me taking her temperature twice a day.  She looked at me and in her eyes I knew she was saying, "No more".  

And so, on Monday, we all talked and discussed the situation.  We made a decision that if the test results came back negative, that we would stop pushing things for Luna.  We would stop torturing her.  We would let her live the time she has left and we would simply love her.

Yesterday, I found out the tests were, indeed, negative.  Today I spoke to the surgeon who truly felt for our situation.  He believes that the congenital defect just happened to be found but that Luna's main problem is something even bigger that, so far, has been un-diagnosed.  "Un-diagnosed".  Wow...what a trigger that is for me.  My mom was diagnosed with "cancer of un-diagnosed origin" 4 1/2 years ago.  What's with "un-diagnosed" in my life?  Anyway, the surgeon is going to consult with internal medicine just to get their thoughts on what the options for next steps are, but he and discussed that as of this point, we feel it's in Luna's best interests to be home and let her die in peace surrounded by the love of her family and not on an operating table. 

And so here we are...living in this ridiculous world of anticipatory grief where I spent so much time 4 years ago when my mom was sick.  Yes, I am relating this grief to that of losing my mom.  Some of you may not understand it, but Luna is our family.  We are preparing to lose a family member and it is painful and heartbreaking.  My two boys are closer to this cat than they ever were to my mom.  This is the first time they are experiencing this pain.  And as a mother, it is devastating to watch knowing that I can't take away any of their pain.

But this pain is a lesson in love.  It is a lesson that says anytime you love, you risk the pain of losing that love in some way or another.  But the true lesson is that the potential pain does not mean we shouldn't love.  Luna has been LOVED for the past five years.  Unconditionally.  And she has given us so much love in return.  She knows she is loved.  And she knows she is leaving us.  And she knows we tried to help her.  And she is grateful to us for respecting her enough to stop.  In April of 2009, my mom told my dad, my brother and me, "no more chemo".  And it was heartbreaking and I wanted to beg her to reconsider.  But I saw what it did to her body and I saw what was in her eyes when she said "no more".  That's what I saw in Luna's eyes on Sunday night.  "No More".

My mom died too soon.  Luna is much too young to die.  And yet, sometimes, this is how life works.  And what we have to know is that the love that was exchanged while the one we loved was here is what was most important.  

Things are hard in my home right now.  We are all walking on pins and needles.  Many tears have been shed.  We are taking it one day at a time.  And the irony of how much grief counseling I do in my job is not lost on me.  I understand grief.  It doesn't mean I like going through it.  I know that this is a valuable life lesson for my children.  But I wish they didn't have to have it. I know the pain we all feel is for ourselves and what we will miss when Luna is gone.  But all the rational talk doesn't ease the pain in my heart.  What I do know is that we don't talk about grief enough.  Grief over losing important people in our life.  Grief over losing animals.  Grief over losing a home or a job.  There are many different kinds of grief and we rarely talk about any of it.  Grief is painful and people would like to ignore pain.  But it is part of life.  

My family is in pain right now.  We will get through it.  But I won't keep silent about it.  By sharing Luna and our impending loss of her, I honor her importance in our lives.  And oh how important she has been.  There are many tough days ahead, but we'll take one step at a time.  And we'll love Luna, and love each other, along the way.  Because although there is less loss without love, love is also what gets us through loss.  Life is meaningless without love.  Through our loss, our love will not diminish.  Instead, it will grow, as our hearts expand to carry Luna in them for the rest of our lives.

Awareness and Advocacy

I'm going to use this new blog of mine today to reach out for some help with my upcoming capstone project for my masters degree.  I am developing a presentation focused on awareness and advocacy for caregivers of those with Parkinson's disease.

As a caregiver myself, one of the things I have found to be true is how isolating caregiving can be.  Even though there are approximately 7-10 million people afflicted with Parkinson's disease worldwide and most of them have some sort of informal caregiving, the task of caregiving still tends to leave one alone in their own exhausting world.

And although there are caregivers to people with all different needs who also experience this isolation, my capstone project focuses specifically on Parkinson's caregivers as I've only got four months to complete this project and it needs to be pretty specific (and of course, this particular caregiving is near and dear to my heart).  

Within this project is the desire to find better ways for coordination of care between medical specialties and caregivers.  In order to work towards this goal, I need to hear from caregivers to find out what would make their lives easier through this process.  There is currently scary research showing that over forty percent of those caring for someone with Parkinson's have reported that their physical health had declined while nearly half have reported increased depression symptoms and two-thirds reported significant impacts on the relationships in their lives.  Yet, very little research has been done on the treatment of caregiver-burden.  

Statistically, women perform somewhere between 59% and 75% of the caregiving duties with an average age of 46 years old.  This means that many of these women are still raising children and quite possibly trying to hold down jobs (like myself).  A national study showed that 33% of women caregivers reduced their work hours while 29% passed up job promotions or new assignments and one fifth of female caregivers switched to part-time work while 16% quit their jobs entirely.

In a 2012 report, Deborah F. Boland and Mark Stacy presented the recommendation that "All clinicians regardless of specialty should have some familiarity with motor and non-motor symptoms related to Parkinson's disease".  They go on to state that the estimation of direct and indirect costs associated with Parkinson's disease will reach 23 billion annually in the United States.  Those with Parkinson's disease have a higher comorbidity occurrence than those without Parkinson's disease.  Yet, coordination of care still has a long way to go and this issue has great impact on caregivers.

The above research is just the tip of the iceberg and it is why I am reaching out to caregivers in order to put together my own advocacy and awareness program that I can present both in person and through the web to impact as many people as possible.  I have received positive feedback from the national Parkinson's organizations to whom I have reached out for support.  Now I just need the people on the front lines.  I need the caregivers.  

I am asking for caregivers to e-mail me at kh899@nova.edu if they are interested in taking part in a survey (to be finalized sometime in September).  It will be a survey that can be e-mailed so I am hoping to reach caregivers from around the world with all different backgrounds.  I need the voices of those living in this world of Parkinson's caregiving.  I need to hear about the challenges as well as the rewards.  I need to know what caregivers need in order to best assist those for whom they are caring.  And I need to know what they need to best care for themselves.  

So, I would appreciate everyone who sees this blog post sharing it via e-mail or social media so I can reach out to as many people as possible.  You may not even know who is caring for someone with Parkinson's in your circle of friends simply because this world is so isolating, so please share this and ask your friends to do the same.  This is one Parkinson's caregiver reaching out to others in solidarity in order to create change.  I sincerely appreciate your help with my journey.  

  

We're All Going to Get Old

Yesterday I was visiting my dad and found myself caught up in a picture on his wall that I have seen hundreds of times.  Back when my dad was in his early 50s, he accomplished something he had always wanted to do.  He won a silent auction for the opportunity to throw out the first pitch at a Seattle Mariners game.  As I stared at the framed photos and story on the wall, I looked at the man who was my dad back then.  He had a full grey beard.  I, being in my early 20s, probably thought he was pretty old.  Yet, looking at the picture now, I saw a man in mid-life with so much life before him.  I saw a man just thrilled by getting to do something he had always dreamed of doing.  I saw the beaming smile that was his trademark.  I saw the sparkle in his eye that I haven't seen in many years.  

And then I looked at the man who is my dad today.  He has been stricken by Parkinson's disease which is slowly taking him away from us.  He is hunched over.  He shuffles when he walks.  He is losing the ability to show emotion in his face.  He uses a walker.  He fell again last week.  His short term memory is poor, although he can still tell you stories from high school, if he can find the words he's looking for.  Parkinson's is taking him away from me.  And I realized yesterday that I'm not far from the age my dad was when he threw that pitch.  It's probably been 25 years since that day at the Mariners game.  So much life has happened in those 25 years.  And yet, they seemed to pass in a blink of an eye.  

We're all going to get old.  My dad is 76 years old.  My mom didn't live to see 74.  That's just 30 years for me.  Granted, we're not guaranteed any additional day.  Nonetheless, I can't help think of my parents in their 40s.  I'm sure my kids see me as old, just as I saw my parents when I was in my teens.  My parents had me 10 years after they were married.  They were first time parents in their early 30s back in 1969.  That was unusual then.  All my friend's parents were 10 years younger than mine.  I thought my mom was so out of touch and that there was no way she could remember being 16.  When I was 16, my mom was 48, just a few years older than I am now.  And as I approach my oldest son's 15th birthday, I swear I was just celebrating my own 15th birthday a few blinks ago.  

I spend time talking to lots of the residents at my dad's assisted living community.  They were all my age once.  Now some can't walk.  Some can't communicate well.  Some have multiple illnesses or ailments.  Most take multiple medications.  For whatever reason, they no longer live in their own home anymore.

Speaking of homes...today a mutual agreement was achieved on an offer on my mom and dad's house.  This was not my childhood home.  But it is the home where my mom died.  I have spent the past three months cleaning it out and preparing it to be sold.  Last weekend, I left it, almost empty, knowing that I might never walk through it again.  That home signified my parents' retirement years that they were supposed to have which never truly materialized.  I know we have to let the house go.  I'm ready to be done paying all the bills.  I'm ready for my dad to have some more cash to invest.  Nonetheless, there is another part of me that wants to hold on to that house because it represents so much that will simply never come to pass.

Thinking about all of this reminds me about living in the moment.  And that has always been a challenge for me.  I don't have to look 30 years out.  But my mom passed along her "worry gene", so living in the moment is definitely difficult for me.  Even though I know it is all I have to do.  I just have to live THIS moment.  Although, admittedly, I can't help but look for myself in the eyes of some of the residents in my dad's assisted living community.  We're all going to get old.  Someday my children will be rifling through the pieces of my life in papers and memorabilia.  But I only have to do today.  And work to make decisions today that will allow me to age as healthy as possible.  However, because of where I am in my life today, it's hard not to consider my own mortality on nearly a daily basis.  But maybe that's not such a bad thing.

We're all going to get old, if we are lucky enough to live a long life.  But we only have to live one day at a time.  Mindfulness.  In this moment.  Perhaps the next 30 years will still pass by in the blink of an eye, but I want to make sure I fully LIVE as many of the moments in those years as possible.