This is Love

Came home today after walking Ashton and stopping for 3 beers at Jody's and found Julie unable to get off the couch and having a bowel movement.  She was trying to put on a second depends to contain the problem.  I had her give me a bear hugs and I carried her up the stairs, sat her on the toilet and undressed her.  Seemed like it was all done, so I undressed and had her give me a bear hug and took her into the shower to clean-off.  When we started to get out, she had diarrhea so we stayed in the shower for a while and I cleaned up again.  I got her out of the shower and her legs went out completely and she went down on her knees.   I dried her completely and had her give me a bear hug again and I lifted her and carried her to the bed.  I cleaned her up some more, put a depends on her and then lifted her again and got her on her side of the bed.

She had not said much during the whole thing.  When she was finally in bed and I was standing there soiled and covered more with sweat than water, I asked her, do you feel like I love you.  She gave me the biggest smile and nodded.  

I went back to the shower to clean up me and the shower and then went downstairs and cleaned up and stared doing laundry.  Found Olesia had not finished her job so her stuff was in the way.  I then went and picked up all of the art work beside the bed and put it on the table, Olesia's job not finished.  Then gathered all of Julie's med and started a spreadsheet to administer the meds.  

I am now writing this note.  I always new, well for the last couple of years that this day would come.  I had always dreaded it.  But, through it all, I just said to myself, this is what it means to love someone.  And, it didn't bother me.  My back is killing me.  I have incredibly strong legs, but kind of an average back.  Julie after all the steroids is about 170 pounds I would guess.  Not so easy to lift and move upstairs, into a shower and then to bed.  

Yes, the day for hospice has arrived.  But, I have to make it through tonight first, and probably the weekend. 

I think this is the last post ... don't have the energy to do this post, face-book and take care of Julie. If you want to see the rest, join me on face book or ask someone who is on facebook for the news. 

Julie Update 20100710

Julie 20100710

Things are continuing south.  Julie struggles some days to walk and at best it is a shuffling gate, with steps about 12 inches long.  She slid off the bed the other day and I had to help her get out of the floor.  She takes pain pills, hydrocodone acetaminophen (but I suspect she will need something stronger before long) to relieve the pain in her legs.  Her legs are swollen, I have lost the prescription for the stockings, and a few other things I can’t remember.  Why the world has to push paper around any more is a great mystery to me.

After two weeks I convinced Julie we should move up her appointment with the doctor.  Her doctor was out of town, but we saw Dr. Khatri, who is a great doctor also.  He listens.  He listened to me and then ordered a Pet Scan, and three MRI’s, blood tests, etc.  Oh yea, that is what I am missing, the blood tests.  Should have gotten those yesterday.  Putts.  Julie has always been the one to remember such things.

I also got Dr. Khatri to reduce the steriods.  He pretty much got it all right.  I think I could be a medical doctor quickly, except for all the school, regulations, licenses, etc.  But, I digress.  A little levity seems to be all that stands between me and insanity some days.

Julie had her first “mess” despite the Depends last night.  I always thought it was going to bother me, but I got up and did most of the clean up last night while she took a bath.  I thought a shower would be best, but Julie still does stuff her way.  In fact, at times she resists me helping her.  Reminds me of her mom who even after dementia had taken away most of her facilities would not let John, her husband, help her, but would let anyone else.

Did four loads of laundry.  Trying to get Olesia to do Laundry and Grocery Shopping as her chores.  Gradually build up to three chores is the hope.  She seems happier, I am not sure if it is the drugs (<$1000/month) or being back home with less stress.  Don’t know how she will deal with her mom’s condition when she finally pays attention.

Consulting is slow, but there is some.  Worse case is that I will be out of money in about two years and be back to where I was at 19 when I started my journey of taking care of myself, etc.  I write a lot these days, hoping to hone my skills to write novels when the current trials are over.

We get the results of all the scans on Friday.

(P.S. most of my updates these days are on Facebook, gradually phasing out this blog.)

Wonderful Julie

Diary 2010 

20100703 Thoughts / Wonderful Julie

We've had easier months, Julie, I, and Olesia, the current inhabitants of our house.  Second week of June, Julie and I attended her mom's funeral in Wisconsin.  Travel was tough on Julie, but she sucked it up, and I was the only one showing any signs of stress at the airport, funeral, etc.  Pleasant funeral as funerals go.

My company insisted that I move to Olean on June 21.  In reality, I think they were unhappy with my performance on the Acid Gas program, I was unhappy with the lack of support and direction of the program, so we agreed.   But, taking care of Julie and moving to upstate NY was not a possible combination, so I resigned. Made 4 years, the longest employment I've had in my life.  I've had two decent consulting jobs, so far, one is continuing.  I am participating on two DOE grants for making solar grade silicon.  I want to write up a patent idea I have for magnesium.  I have a good lead on a patent infringement case on processing hazardous wastes.  And, I hope to get some consulting working helping write SmartMaterials back at my old job.   And of course, any day now the magnesium project that I have been working for eleven years or so is going to sprout wings and fly.

Now, how is Julie doing.  Well, six weeks or so, they gave her palliative radiation treatments on a lesion on her spin.  The lesion (tumor) was (is) adjacent to her spinal column, so they could not be very aggressive with the radiation treatment.  In my opinion, much of the symptoms have got worse since then, bladder control non-existent, feet swollen (from steriods ?), walking hobbled and restricted, balance poor, tired all the time, and frequently her legs are in pain.  

Olesia came down and got me the other night.  Julie was rearranging her shoes in her closet, one of many projects she is taking on that are a great mystery to me, and then got too tired to continue.  Olesia found her curled up in the fetal position in the closet, but Julie told Olesia she was okay.  That is what Julie would say whether it was true or not.  I came and sat with her in the closet and talked with her for about five minutes and then helped her back to bed. 

I lost my cool a few nights back.  Julie had got up to change her depends about 2 am and occupied our bathroom.  So, I went to the other bathroom and found it so full of clothes and stuff on the floor I could not push the door open enough to get comfortably to the sink.  I lost it and started throwing her stuff with some force into the bathtub thinking it was only clothes.  Well, there was some hard stuff, don't know what, and it slammed into the bathtub wall with a large noise.  That didn't stop me from throwing the rest of the stuff into the bathtub and then using the bathroom.  Moments later, Olesia was yelling at me to use my own bathroom, I was yelling at her that I needed more help around here, and Julie was trying to calm us down.  I was also upset with Julie at all the projects she is starting (and not finishing)  -- I feel like the plague of disorder that starts in my daughter's bedroom is spreading like a full blown epidemic throughtout our house.   Julie said she was dying so what did it matter; I didn't answer and just went and tried to sleep on the couch.  Ashton made it too crowded there, so I came back to bed about day break and got about two hours of sleep before my big meeting.  I was lethargic in the meeting, but hopefully my science carried me ... I kept forgetting names.  Olesia and I talked the next day over some Reese's peanut butter candy that I got for amends.  I said I was sorry to both Julie and Olesia, and she was helped out some over the last two days.  She still has no grasp of how much work it takes to keep this house afloat and earn a living.

I try to write some for sanity, and dream of the day when I can do it most of the time.  I plan to downsize after Julie is gone.  Find a cheap yard for Ashton and the cats, somewhere to be determined.  Then consult enough for bread on the table and internet for the computers, and write and play tennis the balance of the time.  Lots of great novels planned and in progress in my head.