The sun's out in more ways than one.........

A nice, strong, spring, Jersey sun is shining!
Paul's tanning in the kitchen...I'm fried red.

The high-speed therapy is kicking in....he is really doing well.
His breakfast order was made in record-breaking time!
eggs?
yes
scrambled
no
medium boiled
yes

english muffin with raisins
no
half a bagel
yes
cream cheese
no
butter
yes
that's goyish...ya sure?
yes
Last week....it took 30 minutes figuring out what he wanted...and I'm not sure he really got what he wanted. His preschool report still holds true....
"he's motivated by food".

We've really seemed to hit our stride...a great rhythm...it's amazing how much easier we can communicate. So many of his therapists are pushing him to look into an augmentative communication device. He's not quite ready. I think he feels it would be giving in to a degree...we'll see. I don't want him to feel as if he has to have me around to get his message across.
He still wants his four newspapers everyday...we settle for 3 to 4 times a week...on our way to therapy.
Paul spends hours going through them.

The running-around-the room and jumping-up-n'-down speech therapy (that's me not him) seems to be working. Let me rephrase that. I think ALL the therapy leading up to now, seems to be working. I notice that he makes more advances verbally etc. when he has tons of Physical Therapy. They seem to go hand in hand.
We're at Kessler three afternoons a week...he really loves the work.
No wheelchair for him...I help him from therapy to therapy....he does love to sneak out the back door at the end of the day...saving 100' of walking!!

There have so many gifts of love and support the last few weeks!
Barbara...Elle...Nancy...Joni..Ann & Joe, the food mavens of northern Jersey....and Edith the queen of borscht from Philly!!
We can't thank you enough...when we come home at the end of therapy days we're beat...it's so nice not having to figure out what to have for dinner!
I've even gotten Nancy to divulge a secret recipe....shhhhh!

I've been saving the biggest news for the last.
Once again Peter King has come to our rescue.
He & our dear friend Barbara Neibart are organizing a fundraiser to help cover the cost of extensive speech/aphasia therapy.
He made the announcement in his Monday Morning Quarterback column in SI.com.
Link to Peter's column.
We plan on going to the University of Michigan for an intensive 6 week aphasia program in August...23 hours a week of therapy!
Link to University of Michigan site.
August is the first opening available...but I figure that will give him more time to get physically stronger. Haven't decided if we'll fly or drive....trying to weigh the pros and cons of both. More flexibility if we drive...pit stops...and we'll have our own car...one less thing for Paul to have to adapt to. He really is fearless...I think he'd go in a space shuttle.

My sister Gail is coming to stay with us for a few weeks...she'll be helping Barbara with the fundraiser...hopefully they won't drown in the details.
Sarah and Natasha, Paul's daughter and grandaughter will also be visiting next week.

My big plan....heading out to dinner...it's time Paul hits the streets and entertains the masses!

THANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOU

November Sunday on the Grand Canal....

A glorious day with a wonderful friend....and a great bottle of Moscato d'Asti!

Thanks....

Thanks for your notes of encouragement!!
I figured I should post a message soon....after my last meltdown, I'm sure that everyone thought I was down for the count. No...just having a really tough day!
I've been trying to take a second look at our surroundings....looking for grace notes in every corner of our lives. Scarves in drawers....posters stacked in the living room....the buds coming out on the vines covering the windows...well, soon the vines will cover the window with their annual blanket of green.

Today we went to St. Catherine's parking lot...for a nice...flat....walk. You would be amazed how many dips are in sidewalks...parking lots....fields. When we hit a downhill Paul starts to really roll along. No, he's not in a wheelchair...he just starts gaining momentum....and off he goes.
After we finished our run....
I suggested a drive.
Something we never had time for before. Off we went...wandering in the woods. Up to Split Rock Reservoir.....on to the Tourne.....with Paul directing my every move. Bossy....bossy...arguing the entire time. I take this as a really good sign.
I told him he sounded like a Geiger counter....ta ta da da tit ti da ti a buzzz.....up and down the lane.
Maybe he has a new career as a Tuva throat singer?

My favorite photo of Paul...

I always loved this photo of Paul...it was taken in a castle in the Gorges of Tarn.
I took it at the end of a long day of exploring....Paul is always game for exploring every tiny road...even if it leads to a dead end and we have to back up for a mile.
We've done that several times.....and a few times I've refused to stay in the car......

One of the hardest things about Paul's disabilities is the fact that it disables him from his natural sense of exploration. Now he is reexploring the kitchen and the the nuances of the car and couch.
I don't want to see him lose his passion....his drive. I'm wondering if he can continue to keep up his spirits....his sense of wonderment.....with his limitations.
I know...many of you are going to give me a line of crap..."oh it's all is his viewpoint...keep looking forward...etc." How many of you have been faced with such tragedy...and for such an extended period of time?

There isn't one aspect of our lives that hasn't changed. Even our sleeping patterns...we were night people....loved the late nights....we'd work til 10ish and then sit down to watch a movie. Usually going to bed on the far side of midnight.
I just put Paul down...it's still daylight...7pm....he started dozing around 6.
Paul use to do the long distance driving...and into the city. I did the neighborhood driving....that hasn't changed.
So I guess I'm exaggerating.
Paul handled all the expenses...taxes...Social Security etc....it made him more comfortable. It's not a bad thing that I have had to take a crash course in finance. I'm doing fine. But I am nervous about switching to a no-earning household into retirement status. Not sure how we'll fare with the wild expenses and a huge cut in salary.
Sure we'll find out....as the rest of the nation is in the same boat.
I loved our life together...we were so close and had so much time together....and solitude....and peace....security and freedom....emotional freedom.
It is now so demanding and scheduled....not unlike having an infant in the house.

This week Paul started out-patient rehab at Kessler. It's very demanding...but in a good way. Paul loves the hard work...it's physically demanding. The physical & occupational therapy are excellent. The speech therapy....not so good. Thank god, we started with the speech pathologist....she's excellent. Katherine comes to house on Wed afternoons. The only problem...I am suppose to supplement his sessions....three times a day.
It is impossible.
I can sneak in one or two...but Paul isn't keen on having me drill him constantly.

The amount of pressure on me is enormous....I feel as if I'm totally responsible for his progess.
You wouldn't believe the work that is assigned to me.
"get Paul's records"
"set up the muffin tin game"
"the fix-it project" (holy shit...I just remembered that I haven't done that yet)
"Sing another song...5 or so a day"
"make sure he does four sets of twenty - 3 times a day"
"put on his compression glove"
"he should wear his splint 2 hours on and 2 hours off- total of 8 hours a day"
"make sure his pulse rate is above 50 before you give him this med"
"don't give him this med if his blood pressure is too low"
"make sure you sit on his right side"
"don't sit on his right side...it's hard for him to see you"
"watch his right arm...he forgets he has it"
"trace the alphabet"
"have him blow out matches...bubbles...blow toy"
"ice his hand"
"put heat on his shoulder"
"fill out the forms and get a letter from the doctor"


this is just the tip of the iceberg...this is after I give him a shave...haircut...manicure...pedicure....lotion his feet....help him brush his teeth...get him dressed and not to mention the unmentionable...bathroom duties.


One thing that we really are working hard on is getting a clear 'yes' & 'no' answer.
Paul knows his answer...but it comes out jumbled. This is especially maddening in the middle of the night.
"Paul do you have to pee?"...
"nay"
"is that a nay, yes or a nay no?"
"nay-nay"
I get up and turn on the hall light and he looks up stunned as if to say "what are you doing, I'm trying to sleep".
An average night is 4 trips....a good night 2....a nightmare night 6.
Kinda hard to function the next day!

Can you imagine not being able to ask the person you love a simple yes or no question?

We were driving to therapy & I was thinking about the drive I was going to make the next day to the accountant....taxes.
"Hey hon, is it under an hour or just over an hour to Christine's?"
"when...whenna...when...wheennn...when?"
"Paul could you just say yes or no?"
"when, when, whennnnaaaaa?"
If he wants to give me additional info that requires more than a yes or no answer he gets stuck.

I can't begin to express my pain....the pain of losing his conversation. The endless stories that I tried to memorize....the joy he had in telling me.
I find myself rocking in grief...not sure if I grieve more for him or me.
I grieve for the nonchalant way the world responds to our lose...a skipped breath...blip in the radar.
Doesn't anyone else miss this man's brilliance?
I could scream at the universe....yell at the gods....curse the mailman....kick the cat.
But all I do is cry....by myself....in corners.


I'm sorry about posting such a difficult post....but I think that too many caregivers are sitting in the shadows and suffering silently. If I can give a snapshot of what so many are going through...letting the world in....seeing how the other side suffers....if I can help one person or if one person realizes that someone understands.....maybe a shoulder to cry on.......
then maybe my tears are not in vain.

One week makes a difference....

The week started out rough...barely treading water.
Last Sunday I read a column in the NY Times....Layng Martine Jr wrote about taking care of his paraplegic wife for the last 15 years. I figured if he could do it for 15 years then I could give it a real shot!
One very important thought that he conveyed was the fact that all it has really taken is EFFORT.
He felt that that was a small price to pay. Somehow looking at it that simply, helped me immensely...gave me a new perspective! It was a turning point for me. I wrote a thank you to him...here is a link to his love letter to Linda, his wife. Martine's column

What started out rough has ended with joy!
I can't tell you how excited we are about all of Paul's progress this week.
Hmmm where to begin?
How about finding a bottle of dessert wine in the frig?....a bottle of Mitch Consentino's semillion...I looked at Paul and asked him 'how the hell did you get this here?' It had been in the family room. Somehow he got it and tucked it into his wheelchair and hauled it two rooms to the frig. I haven't been further than 10 feet from him in weeks. I realized that for days he had been trying to tell me that he wanted to chill a bottle and have it with dinner......

Paul is whipping through flash cards....he in now organizing the 'sequencing action cards'. Cards that I find confusing...I keep second-guessing which event comes first, the walk in the orchard? Or eating the apple?

He has become annoyed at the picture flash cards and is working his way through identifying the alphabet. You can't imagine my joy....I have been going over the alphabet til I'm ready to pop. I thought it was useless. NOW HE CAN IDENTIFY 70% . We also put together the puzzle of the United States, that Sarah sent.
A few weeks ago...impossible.
He insists on 'reading' the daily papers....for months I have gotten them...he looks at them. I really think that all of his concentrating is paying off. He spent over an hour working on a Suduko puzzle he only filled in two numbers....but I'm sure that he was really figuring things out...and that we'll see the results in a few days!
The Occupational Therapist bought a booklet of diagrams illustrating his daily arm/hand exercises....after she left...I found him at the table with the booklet open and he was going through each one. I know this all sounds like small potatoes....but you have no idea how long we have been working on picture identification.
It is miraculous!

One last note of the week....all of you men over 50 will understand my Flomax faux paus.
The other night I gave Paul his Flomax before bed....and I suffered the consquenses.
He was calling for the urinal every hour on the hour all night.
Flomax in the AM....is my new mantra!

Monday we start out-patient at Kessler....I am battle ready!!
We are going to lick this &%#$# stroke!!
Paul will return....HE WILL TALK....HE WILL WALK ALONE.
I Don't think so, I KNOW so!

Love to all.....gotta run I hear grumbling on the monitor.