Tuesday, December 25, 2018

Down This Christmas

Christmas Day 2018.  I feel "down."  Christmas really has never been the same for me since Ray died.  This was his FAVORITE time of the year.  This is also the anniversary of his last days on earth.  Memories of his decline in health over the next couple weeks flood my soul.  The next couple weeks are going to be really hard on me.  You would think nine years would erase the pain, but it doesn't.  Some of my "pain" may also be that I watch as Drew slowly declines due to his Huntington's Disease.  It makes me sad.  He expresses no emotions so he's hard to "read."

This is also the second Christmas without my mom.  Although we hadn't spent Christmas together in years, she was always there for me.  A quick phone call away.  We talked every single day.  Sometimes several times a day.  I would call her about the dumbest things and apologize, but she always told me she wanted me to share all those things with her.

So, I'm kind of down this Christmas. - Jimmy

Monday, November 26, 2018

Nine Years Now & It Seems Like Yesterday

It's Monday after Thanksgiving.  First big snowfall of the year.  Every school is closed today.  It's beautiful out and I am so glad I only have a four mile drive to work (unlike the drive I had to Grand Rapids during the horrific winter storm of 2013/2014).

I had a great Thanksgiving week!  Friends (and former B&B guests) Joe and Renee came in last Sunday and stayed until Saturday (not with us, we don't have enough room).  We spent some great time together with them.  I had Tuesday, Wednesday and Thursday off so it was a nice time.  My sister and two nieces, Julia and Megan, came in on Wednesday.  Julia and I spent the afternoon and evening baking a Dobos Torte which my grandmother made EVERY Christmas.  Then we even made her "famous" chip dip recipe.  On Thursday we all exchanged Christmas gifts before the Thanksgiving dinner.  It was a much needed soul rejuvenation for me.  I haven't spent Thanksgiving with any family members since after my brother's death in 2007.  We closed the B&B that year and had the ENTIRE family spend Thanksgiving with us...even my mom's best friend and her husband, Maxine and Ed VanderPloeg.

As the anniversary of Ray's surgery comes upon me I am given daily memory reminders on Facebook from 2009.  None of them mention Ray's cancer diagnosis or upcoming surgery.  We were keeping it pretty private.  We also were hoping that he would recover quickly with no complications and life would move on.  So as I read my comments from 2009 I can also read "into" them and remember exactly how I was really feeling as I made comments.  Going out to dinner, going to watch sunset at the Lake, etc...my mind was actually reeling with the "what ifs."  Nine years now and it seems like yesterday. - Jimmy

Monday, October 8, 2018

One More Short Summer Experience

So it's a sunny October Monday morning.  Today is "Columbus Day" which we still celebrate and honor here in the United States of America.  History can be very interesting as it is written by the victors.  When I was in Paris we went to the "Hôtel national des Invalides" which is the location of Napoleon's tomb and contains the museum of the history of France's military.  Their history of the defeat at Normandy was interesting as it was described slightly different than I learned in my American history class at "Baptist Academy".  At the museum in France reference was made that Charles De Gaulle successfully defeated Germany with the help of the U.S. Military.  I thought we played a bigger role than that.  So it is with Christopher Columbus.  The story we were taught is quite different from the reality.  I read a book called "Lies My Teacher Told Me.  Everything Your American History Textbook Got Wrong."  (Click link for full PDF of the book.)  It's quite interesting.  

So it's been almost a week since by last blog.  Our schedule changed last Wednesday from the plans I wrote about.  We had breakfast at my favorite place "The Windmill" in Holland.  We didn't make it to the outlet mall because I just didn't feel like going.  Sometimes I make plans in the morning and by mid-day those plans change.  That makes it difficult for Drew.  When I tell him what our plans are his brain "commits" to that.  Therefore many times I have to put disclaimers in my conversations with him.  I have say things like "...maybe we can do 'such and such' today...but don't hold me to it as I might change my mind."  I have to be the one to make the plans and ideas for things to do as he doesn't have the capacity to do so.  One of the problems with HD is that a person has apathy.  Outsiders will think the person is lazy but the reality is just that their brain is "unwired" for any feelings of emotion or interest in things.  So I lead the way.

I had a great visit with a friend of mine this past weekend.  I met him about 20 years ago when he was a guest at the bed and breakfast I used to own.  We became friends quite quickly.  A few years ago he moved to the San Francisco Bay Area.  Drew and I went to visit him this last February.  His family lives outside of Chicago so he flew in to O'Hare and spent time with them and then came with his sister and her fiancé to Saugatuck for a visit with us.  It was a great visit.  He even worked at the store with me on Saturday.  We hope to go visit him in California again this next spring.  I use the word "hope" because that is what I have to say to Drew when he asks me if we are going to "Cali" this spring.  I reply "I hope to."  I tell him it depends on how our finances are, otherwise his brain will be set on that happening and it will be difficult for him to handle the change.  

I have the next two days off work.  This week it's my turn for a haircut...so back to Holland we go on Wednesday.  The temperatures are supposed to be back into the 80's so we will have one more short summer experience.  - Jimmy



Wednesday, October 3, 2018

I Will Be "OK"

"Existential Nihilism" argues that life is without objective meaning, purpose, or intrinsic value. - Wikipedia

This is how I have been feeling lately.  I've been struggling with what life is.  What MY life is.  I used to feel like I had purpose.  I had a plan.  I knew where I was going.  Or at least I thought I did.  I had someone that was going there with me.  Then he died.  Almost nine years ago now.  I should move on.  But I can't.  I'm stuck.  I feel as if I have no future to look forward to.  Part of that is because I am in a relationship with someone that literally has no future to look forward to.  He has Huntington's Disease (HD).  This disease WILL get progressively worse and the only thing we can do is try to stave off the effects as much as possible for as long as possible.  But one day his body will give in.  He will succumb to the disease and I will be left with grief yet again.

This was my choice.  When Drew and I were reacquainted eight years ago I pursued dating him.  A couple months into the "relationship" he advised me he was going to be tested for HD.  Not knowing exactly what that was I "googled" it.  The information I found out was that a person usually lives about 20 years after being diagnosed.  That seemed like a long time for me and I agreed to continue the relationship with him.  My thought was that something could happen to me physically (such as a stroke) and the tables would turn and he could end up having to care for me.  So I felt there was a risk for both of us.  There are no guarantees to anything in life.  I also asked myself the question:  "Would I have pursued a relationship with Ray if I new after 21 years he would die suddenly?" - and the response to my own question was a definite "yes."  So after Drew tested positive for HD I assured him I still wanted to pursue a relationship with him.  So, yes...I was "warned" of the consequences of having someone so close to my heart literally deteriorate in front of me.  Some may say it's my own fault, I knew what would happen...and that is true.  I don't regret my decision - he is one of the easiest person's to get along with.  He's kind, compassionate, will do ANYTHING for me, and we have MANY of the same interests such as food, television shows, and music.  Being in the relationship with him is no "work" whatsoever.  We click very well together.  It's the future I'm afraid of.

When I look at my future I sometimes think of it without him in it because I know that very likely at one point he will pass well before I will.  That scares me.  I'm afraid to get too close to him.  I find myself kind of being "stand offish" emotionally.  I'm afraid to get too attached...even though we've been together almost eight years now.  Also, having taken on the role of more of a caregiver now I feel odd if I make any sexual/romantic advances...which I no longer do.  It almost feels as if I am abusing my role as caregiver, when in reality I know that is farthest from the truth.  But the mind plays games.  What "role" am I playing today?  So in a way I just don't plan for the future.  I literally take it day by day.  Friends ask me what I will do when he needs full time care.  I just say I don't want to talk about it.  We'll address that when (and hopefully "if") that day comes.  When I come home from work each day I look at the house to see if windows are open...if I can see the tv on...is there any sign of life?  I have that on my mind because I came home to find Ray dead (my partner of 21 years who died of a heart attack after complications from colon cancer surgery).  I know that reality all too well.

So where does that leave me today?  I question life.  I question the reality of life after death.  I live each day.  But that's really all I do.  I just "live" each day.  I don't thrive to live anymore.  Maybe that's all life is really about, just "living" each day.  Trying to get through each day.  Who says it has to be more than that?  From the outside I am sure those around me have absolutely no idea how I feel.  They see me working, shopping, going out to eat, making wonderful dinners, and even organizing going to events around town (sometimes).  To me that is just a part of getting through each day.  I have no zest or excitement for life.  I just do what I have to do.  Part of it may be that I constantly worry about Drew.  I worry that he may fall down the stairs.  I worry he may choke on his food.  I worry he may fall and hit his head (I saw a cut on his forehead one day when I came home from work and asked him about it.  He said he knew nothing about it.  Last week I heard a thud from the bedroom.  I called into the room asking him what happened...he said he fell out of bed.  What?!  I journal these things so I can update his doctors on what is going on.)

So, today I go back to living for today.  I made an appointment for Drew's haircut today at 1:00.  We plan to have brunch before that at DeBoer's in Holland.  We'll shop at Aldi and maybe I will feel like going to the outlet mall in Byron Center.  I'll have a good day today.  I'll make a nice dinner for us.  We'll do our nightly routine of watching ABC Nightly News with David Muir.  Watch some "Big Bang Theory" episodes.  I just won't be doing any planning for my future yet again today.

I will be "OK." - Jimmy

Sunday, April 1, 2018

7,408 Days

Ray was my comforter.  Whenever I worried about something he would reassure me that "everything will work out - we will be fine."  I miss that.  Just his peace about everything made me feel better and feel that everything happening in my life will "be fine...it will all work out."  I wish I had that in my life now...a comforter.  I have no one to reassure me and make me feel that all is ok.

My life is good, but "life" still happens to me.  "Life" still happens to everyone.  It's so easy to assume that everyone else has it together and their life is perfect.  But I know life isn't perfect...for anyone.  It's so much easier to get through when you have a "comforter" in your life.  Did I say I miss that?

Eight years and I still ache.  I want Ray here with me to go through life.  To finish what we planned.  He was only 50 - and we still had so much time left.  I have now lived 38 days longer than Ray.  He lived 18,570 days.  7,408 days of both our lives were spent together.  - Jimmy

Saturday, March 17, 2018

I Guess That's A Good Thing

We just returned from our first vacation in six years!  Other than short visits to family in Detroit, we haven't had a real vacation since 2012.  We flew to San Francisco and spent a week with our friend who used to live here in Michigan.  I've know him since Ray and I had the bed and breakfast.  He stayed as a guest and our friendship grew.  So that has been almost 20 years now!  It was a much needed getaway for both Drew and me.  Our friend took us all around the city...he was our own personal taxi service and tour guide.  I have been to San Francisco many times...mostly for work and a couple times for pleasure, so I was a bit familiar with the city but it was so nice not to have to drive.

It is now March and spring is just a few days away.  Easter is early this year, April 1st.  We will do our traditional Easter egg coloring on Friday night and celebrate on Saturday with a group of friends.  Then I will have my own Easter dinner on Sunday with just a couple friends of ours.  I am thinking I will do the "Rack of Lamb Genghis Kahn."  A recipe Ray had from "The Lark" restaurant in West Bloomfield.

It's St. Patrick's Day...sunny out and still a bit chilly.  I don't have anything planned to "celebrate" except for working.

My life is boring right now.  I guess that's a good thing.  - Jimmy

Wednesday, January 3, 2018

Surreal Is All I Can Say

Happy New Year!  2018 is here and today, January 3, 2018, marks the eighth anniversary of Ray's death.  I started my morning by watching the videos that the funeral home made.  I let myself cry.  Otherwise I've done pretty good today. 

I would like to do something tonight in honor of Ray but it's sooo COLD out that I think I just want to stay in.  The temperature here has been in the single digits and wind chills are below zero, plus there has been a ton of snow.  The local forecast is for 1 - 2 feet of snow in some lakeshore areas.  So I'm bracing for it.  I'll stop by the cemetery for sure.  The weather was kind of like this the year he died.  There was so much snow that winter. 

I woke the morning of January 3, 2010 with Ray paging me on the house cordless phone.  He was sleeping on the first floor in room 3 and I was sleeping in our innkeepers quarters.  It was about 6:30 am and he was complaining about being in pain.  I came down and assessed the situation.  I asked him when he took his liquid dose of Vicodin last.  He told me it had been several hours earlier.  I reminded him he needed to take it before he felt pain.  I didn't think taking it on an empty stomach would be good so I gave him a cup of pudding and some milk and then had him take the medication.  He was also dealing with chronic hiccups.  I told him I would call his doctor after 8:00 am.  After taking his blood pressure I went back to bed for about an hour.  I called the surgeon's number and got the doctor on call.  He called in a prescription for his hiccups to be picked up at the Holland Meijer since the Saugatuck pharmacy counter is closed on Sunday's.  I went there about 1:00 pm to pick it up.  I had to wait a bit as he had never had a prescription filled there before and they had to put in the insurance information.

While I waited for the prescription I roamed the store.  I picked up a Starbucks coffee (which I never drink).  I put some Christmas clearance items in the cart and picked up his prescription.  I headed home.

At about 5:30 pm he called me to come into the room.  He had tried to get out of bed and fell to the floor.  His legs gave out.  He was afraid and angry - screaming "What is wrong with me?  What is wrong with me?"  I tried to lighten the atmosphere and said "Now you sound like Blanch Hudson in 'Whatever Happened to Baby Jane.'  We know what is wrong with you and have to get your strength up.  We're going to get your PET scan on Tuesday and see where we go from there."  He didn't like my "Baby Jane" reference.  I apologized and tried to explain that I was hoping to lighten the situation. 

Friends and guests from Detroit, David and Kyle, came by to see Ray and booked a room to stay the night.  Ray didn't want to see any visitors.  I told him that they drove all the way from Detroit and he should make the effort.  He agreed.  I came out of the room to tell David and Kyle they could go in to see him.  They had overheard us in the room and said they would wait till morning.  They offered to take me out to dinner at Wild Dog.  I was eager to go.  I had been a caregiver for weeks now and running the bed and breakfast on my own.  Including the BIG New Year's event.  I wanted to just get out for an hour and a half and have someone else wait on me.  I asked Ray if it was ok if I went.  He assured me that I should go.  I helped him drain his temporary ileostomy bag and got him comfortable on the couch in the room.  I set the phone beside him with my cell number.  I told him if anything happens he can call me or call 911.  Surely I DID NOT think he would die. 

When I got home from dinner I came into the room and he was sitting there with his head back resting on the top of the couch.  I thought he was just resting.  I came up to him calling his name...no response.  I took his head in my right hand and pulled it up and looked into his eyes, which were open.  His eyes appeared (to me at least) to look relieved I was there.  I kept trying to get a response from him with no luck.  Immediately I made a call to 911 who had me get him on the floor and begin CPR.  Within minutes the First Responders were there and took over.  That is when my nightmare began. 

I was so fortunate to have my family of friends come to my side immediately that night.  I don't know what I would have done without them by my side.  Everything became a blur at that point.  At 11:00 a.m. in the morning I was sitting in the funeral home planning my soul mate's funeral.  Surreal is all I can say.  - Jimmy