Okay - it has been a long while since I updated on anything on here - so here is the year in review!  I put the corny Christmas letter here for a reason - read if you want - or skip to the next section... (the purple writing!)

 

December 2014

Dear Friends and Family -

Well I don’t know about anyone else but I’m kinda glad 2014 is winding up!!  It has been a lack-luster but very busy year in the Metz household.

I will start with Jim’s busy, busy year!  Jim continues his collection of “-ologists.” I seriously have lost count how many we have seen over the last five years.  In August we met a new neurologist – he specializes in “dementia-extrapyramidal syndrome conditions.”  No, I don’t understand what that means either.  Basically – Jim still doesn’t fit in to any condition completely.  According to this new doctor all these diseases affect the same parts of the brain and fall under the “ALS umbrella.”  Over the past year he has developed more and more Parkinson’s-like symptoms which lead them to think he may have Lewy Body Dementia, (the same dementia that Casey Kasam had and they believe Robin Williams was developing,) however he still exhibits symptoms of Frontal Temporal Dementia.  I think he will always be somewhat of a medical mystery.

In April Jim came down with a stomach bug and decided to add some excitement to Mikayla’s first sleep-over.  We awoke that morning to find him on the floor.  He lost all strength and power, was hospitalized for three days and spent almost three weeks in a nursing home for rehab.  He was discharged right before Easter.  Though we saw a short-term improvement after that stay all in all Jim has been on a steady decline.  He is having more frequent falls, movement and memory issues.  It is getting harder and harder for him to get out and about.

Jim’s year was not all dismal – On July 9^th he threw out the first pitch at the Indians vs. Yankees game!!  Thanks to the support of many friends and family, Team Shaggy sold the most tickets to the ALS Awareness game with the Tribe!  We got to go to team batting practice and watched the game from box-seats right behind third base.  It would be a perfect story if the 14 inning game had been a victory!

Speaking of Team Shaggy – I am sure everyone has seen the Ice Bucket Challenge!  How much fun was that??!!??  Team Shaggy raised the most we have ever raised thanks to that challenge!!  We even received a very generous donation from strangers in Switzerland due to the power of social media!  If you have not seen our IBC video check it out on my Facebook page! 

Okay – now on to the rest of us!  Mikayla is in fifth grade and having an awesome year!  She is still in science club.  Her attitude has completely changed from last year and she is just excelling.  She started math tutoring this year and it has boosted her confidence by leaps and bounds.

Ruthie is in the second grade and has her Kindergarten teacher again this year.  She is doing great in school also.  She just celebrated her First Reconciliation and is preparing for her First Communion in May. Both girls are active in walking club and Girl Scouts – and cookie sales are soon to be underway!!

Mikayla and Ruthie kept us busy this summer with swimming lessons and softball.  Between the rainstorms and tornadoes we actually fit a few games in.  We were at the ball field four to five days a week!  I was sad to see it end – it was great social time for all of us.

As for me I am still enjoying my weekends at work.  I am strictly weekends right now since Jim and the girls cannot be left alone at night.  Mom and Dad still get the entire family (dogs too) every weekend.  My mother the Saint keeps everything running while I’m gone. 

My new favorite hobby is sewing – I have been putting Grandma Metz’s sewing machine to work!  I made the girls’ Halloween costumes and bags and currently have several Christmas projects in the works – including an “Anna” costume for Mikayla to wear to Frozen on Ice.

The girls are keeping my days off busy too – I volunteer at the school every week, am active in PTG and Girl Scouts too.  I have also been co-teaching Ruthie’s second grade religion class.  Let me just say – good thing that I didn’t pick teaching as my career!  It is fun though and the kids are always good for a laugh!  My favorite part of this year was doing a church tour with the class – We were pointing out the statue of Mary and explaining it when one little boy piped up “Isn’t that the lady who appears in the mirror??”  I started to answer that one then decided not to open that can of worms!!  

On that note – I have school parties, PSR teaching plans, Girl Scout activities and piles of fabric waiting on me so I will end it here.  Here I thought this would be a short update – guess NOT!

Hope you have a very Merry Christmas and a blessed New Year.

Lots of Love,  

Shelley & Gang

 

So that was written roughly 2 months ago.  Honestly, I was not in the Christmas spirit - Jim had really been having a hard time physically & mentally.  He went onto a significant decline starting around Thanksgiving.  There was no Christmas cheer in my heart.  Then some Christmas angels stepped forward and adopted us for Christmas!  The thought of these strangers helping us brought the joy of Christmas into this house.  But for me my heart still held onto some sadness - I could foresee something coming and had a suspicion I would not allow my self to voice....  These angels let us enjoy the Christmas season and I pushed my inner Grinch further down.

Jim came with us to the Williams Christmas (my mom's family) and it was a nice day.  I saw him holding a conversation with my cousin from across the room - and he was using hand gestures - he could still do that?  Things seemed good.  However later that night he started to complain of arm pain.  I took him to the ER that Monday - all clear except bursitis.  Followed up on Wednesday with our PCP - all good., that was NY Eve.  New years day we watched the OSU game and went to bed.  He called me twice - one he slid off his chair and was on his butt - not a real fall.  Second time he fell trying to turn off the tv.   The last time he closed himself in the laundry room - I had to force the door open to get him - he could not stand and he was confused.  I finally called 911.  He was taken to ER then transferred to the main campus of Cleveland Clinic.  He was hospitalized for 5 days and discharged to a short term rehab center (nursing facility.) 

Though Jim has worked long and hard with physical and occupational therapy he has not regained the ability to walk on his own.  He can no longer stand on his own or perform most activities of daily living.  A couple weeks ago he was seen by ALS Clinic.  Between talking to the team there (which includes his neurologist) and the therapists at the nursing center Jim is not expected to improve in his abilities.  He now requires 24/7 care.  Therefor, the decision has been made to move him to a permanent nursing facility.  Luckily, we got him into a home that is only 3 miles from our home.  In fact - he is in the center of a triangle that consists of us, my parents (about 4 miles away) and his Aunt Mary (about 2 miles away.)  I can be from my bedroom to his in under 15 min!

With this decision we have decided to add another "layer" of care for him - and that would be hospice.  I have met with a couple different ones - and am very comfortable with the one I have chosen - in addition to being another check-and-balance system to his care they also provide services for the family like therapy and art therapy.  I want to stress that this is to better his care - and in no means end-of-life care.  With the diagnoses he has and his inability to walk he can qualify for this care for an infinite amount of time.

Given the situation - this is the best scenario we can hope for.  I am actually kind of excited (? for lack of a better word!)  Having Jim so close to home will allow the girls and I to find a new normal in life and to drop in to see Jim daily.  The city of Brunswick offers handicapped busing which will allow us to possibly take him on outings to the movies and dinners!    I am also looking into some county options that may expand the travel circle.

The home he is in also took care of Grandpa Metz.  Though I was not on this end of the process with him - we were happy with his care.  They seem very friendly and have a very busy social calendar!  Literally 5-6 activities a day plus social outings!  

Please feel free to contact Jim or I - and visitors are strongly encouraged!  The staff here has taken into consideration our family and placed Jim in a room right next to a back entrance, tv room and dining table - so we have plenty of room for visitors!

Jim can receive mail etc at:
James Metz
c/o Willowood Care Center
1186 Hadcock Road   Room 1102
Brunswick OH 44212
  Phone 330-225-0725 ext. 1102