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?"...
"is that a nay, yes or a nay no?"
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?"
"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.