This Is My Life Now

Christmas is over...thank God!  It was an anxious and exhausting one for me.  First of all, Drew is at a point in his Huntington's Disease progression where he can't really do anything to "help me out."  So all cleaning, laundry, bed making, cooking, baking, bill paying, prescription filling, haircut and doctor appointments, grocery shopping, etc. are all dependent upon me.  Add the holidays to the mixture and it's a real whammo!

In addition there is the dealing with all of his obsessions and messes he creates that I have to clean up.  I never get mad at him but it's frustrating and exhausting to me.  The obsessions.  He will be on the couch covered in blankets, many, many blankets.  Then he uncovers, stands up, rearranges the blankets and tries to get back down just to redo the process two minutes later.  Then get up and go into the bathroom and come back, cover up then get up and go into the bedroom for nothing, then the kitchen, then back to the couch to lay down, stand up and repeat this process over and over and over and over.  In addition he constantly mumbles "mmmm, mmmm, mmmm, mmmm, mmmmm."  His poor brain is just being eating and who knows what parts are being deteriorated.  I survive each day...along with him, not knowing what new HD adventures will be coming our way.  I'm trying to care for him at home as much as possible as I don't want to have him reside in a "home" - but I don't know how much longer this can be done for his best interests.  I woke up in October to find the glass top of the living room coffee table shattered.  He fell into it.  He loses balance and drops and spills things.  That is not good for him.  I'm sure I will know when the time is right if we have to make that decision.

This is  my life now. - Jimmy

Peace

Well Mackinac Island turned out to be a perfect getaway.  I was at peace and felt like I was "at home" there.  Drew and I visited the Grand Hotel, did a carriage ride tour of the island (which Ray and I never did) and enjoyed some nice meals.  I saw the same desk clerk/manager there that was there every time Ray and I visited.  She has been there close to 20 plus years now.

Tomorrow starts the beginning of the "anniversaries."  It was 10 years ago tomorrow Ray was diagnosed with cancer.  Usually at this time of year the anxieties and dread fill my body.  This year is truly different.  In the past I have blogged about being "at peace" and "being good" but right now I feel a complete level of peace and satisfaction in my life.  It's hard to explain.  I hardly ever cry (or even tear up) about my loss.  I am comfortable about who "I AM" and have accepted so much about where I am in life right now.  I am happy with ME.

And then there is Drew's Huntington's Disease (HD).  This will inevitably kill him but we are doing all we can to stave it off.  We have numerous appointments with professionals, constantly refill and update medications, and try to safeguard him.  For me it's pretty much close to a full time job.  My biggest concern right now is his weight.  He just won't eat.  He says he isn't hungry.  I've talked to all of his doctors about this and there's not much more I can do other than literally force feed him (which he won't let me do).  His neurologist put him on a new drug (which I am picking up today) which is supposed to help with his sleep and help build his appetite.  His ability to speak is becoming much more difficult however he appears to be conscious of what is going on around him and in world events.  He is slowly losing ability to care for himself as I now have to shave his face and cut his fingernails.  He can still shower and dress himself.  Unfortunately it is a disease that slowly deteriorates the brain so you never know what area is being "killed off" in any one person.  I am just trying to do my best to give him the best life I can...it's difficult.

Thanksgiving is just a week away.  We will be going shopping tomorrow to gather most of the items. It will be good for Drew to get out of the house.  I have made him stay inside due to all the snow and ice.  I do not want him falling.  This year I am not cooking an entire turkey.  I am cooking legs, thighs and breast.  Our friends Joe and Renee will be here to have dinner with us.  It's been a tradition with them now for about four or five years.  It will be a small gathering but a perfect size one this year.

Peace! - Jimmy

The Mackinac Island Trip

It's been 10 years since I've been to Mackinac Island.  It was just three months before Ray died.  I was never ready to go back...but now I am.  I made reservations about six weeks ago and Drew and I are leaving tomorrow, September 24, 2019.  We are staying three nights...returning Friday,  September 27.  Drew has never been to the Island and he is really looking forward to it.  I really wasn't wanting to spend the money but we both need a getaway and I want to do something with Drew while he is still mobile and mostly independent.  I really don't know how much longer that will last.  

Two weeks ago we found out that one of Drew's sister's (who was also suffering from Huntington's Disease) passed away.  Apparently she was "skin and bones," could no longer talk and could not eat solid food anymore.  She was four years older than Drew.  This scares me because Drew has lost so much weight and he isn't gaining any.  He is pretty much "skin and bones" right now.  No one dies "FROM" HD, they die from complications that come from having HD (falling, choking, accidents, etc.).  I feel that Drew's demise will be his weight loss.  I'm afraid his body will shut down.  As odd as it sounds I have prepared myself for this.  I know it will happen and unless I die from some freak accident Drew WILL die before me - so I have to be ready.  Of course Ray's death and aftermath prepared me for this type of thing.  Drew and I have already discussed cremation, burial site, etc.  I guess I need to ask him what type of "service" he would like.  This, of course, may be 10 years down the road but it could be months down the road - I have learned it is important to be ready!  

So, with that on mind...I'm truly looking forward to the Mackinac Island trip!  

-Jimmy

I Had A Wonderful Day

Today is a Sunday.  I am off work today.  It is an extremely windy day with gusts up to 50 and 60 miles per hour.  Small trees and branches down along the roads.  I actually had to get out of the car to move a small tree that fell across the road coming into our "estate."  I made two loaves of banana nut bread (with chocolate chips and walnuts), and a pot roast in the slow cooker.

Three days ago we picked up a brand new car.  Ever since I hit a deer in November of 2013 I've been driving around in older cars.  Nice ones, but older.  I've been so afraid of traveling any distance in case something would happen.  Just over two years ago I purchased a 2004 BMW 325xi.  It's been a great car but I knew I would only be keeping it two or three years.  I was paying off a loan I took out to pay for my insurance deductible when I had my neck surgery.  I had the equivalent of a car loan payment amount every month for three years so I've been waiting to pay it off before I had yet another payment.  I did lots of research regarding cross over vehicles (I wanted something that sits up higher than sedans as it's difficult getting in and out of low cars for a man of my height).  Drew and I went to the auto show in Grand Rapids.  We looked at the five vehicles I was interested in, sat in them, looked at pricing and narrowed it down.  We then went to Hyundai in Holland to test drive a Kona, which is really what I thought I would purchase.  Then we went to Crown Motors and looked at a Mazda CX3 and a Honda HRV.  The Honda was at the bottom of my final list of three.  I didn't even plan on driving it but the salesman was so good at what he did, the pricing was right, and my gut said "go with it"...so I did.  This was the same salesman that sold Ray and me our Mazda when we took advantage of the "cash for clunkers" back in 2009.  I was comfortable with him.  As odd as it sounds working with him and Crown Motors made me feel some type of connection to Ray.  It is so nice to drive a brand new vehicle.  I've gone through so much in my life over the last six years it feels like my life is starting to finally get together.  Let's hope it keeps moving in that direction.

So, being that I had yesterday off as well (which I normally don't have Saturday's off) I decided we needed to do a road trip in the new car.  We went to an indoor art show in Kalamazoo.  It was called a "Garage Sale Art Show."  We bought some nice things.  It was a decent show.  Too much pottery/ceramics though.  Drew bought me a beautiful vase/bowl for my birthday (which is in April).  When I saw something I liked he would ask "do you want me to buy that for your birthday?"  It was so sweet.

After the show we went to Stein Mart in Portage/Kalamazoo.  I purchased a great pair of shoes on clearance for $30 and a watch with matching bracelets for $6.  Then we went to a mall across the street to have Gyros at Olga's.  Drew asked if we could go shopping after we ate and I was happy to oblige as he hasn't had the "shopping urges" for a while.  I was glad to see he was interested in doing something.  We went into Macy's and I bought another pair of shoes for only $14!  Drew bought a pair of shoes with the money Tom sent him for his birthday.  Then he saw a "Super Dry" jacket he really liked.  He wanted to buy it.  I told him I would buy it for him for his birthday which was three days ago.  I didn't know what to get him for his birthday so I asked if he wanted gifts or dinner.  He said dinner.  So we went to Clearbrook for dinner on his birthday.  But I know he really liked this jacket so I told him I would get it for him for his birthday.

With all this...I just wanted to blog it down to remember what a fantastic day I had yesterday.  Our day trip to K-zoo was great.  I had a wonderful day.  - Jimmy

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

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

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