Not yet

We probably have more end of life discussions than your normal household.  We have to.  I want to be perfectly clear on Pat's desires because I don't want him mad at me for all eternity,  if I accidently send  him home before his time.  We know he has a fatal condition and so we are perfectly prepared for the worst, but there is always that small voice at the back of our heads that whispers, "not yet."

We've just been through about three weeks of intermittent illnesses of varying sorts, all of which could have easily gone way south at any time.  After the first bout, when we made it through the night and we discussed plans for the future, the determination was no midnight emergency room visits for us.  We have most of the equipment necessary to deal with Pat's issues and I don't want his last earthly situation to be alone in a room surrounded by the same technology we have here.  It may end up like that, but as far as we can control things, we say NO.

I think we're on the comeback trail with this last bit of sickness.  This has been a grueling time, very tiring, but spiked with fun and visits from family and friends.  The biggest birthday party in the world happened and we welcomed home our youngest daughter and her family from the far side of the world .  Our girls drop by and gag at the snot collected in the de-gunker, but they return the next day with their families.  The baby is crabby because he, too, is recovering from bronchitis and we all have survived that arctic cyclone, the polar vortex. (Of course I had to get that in there.)

There is so much loveliness in living. The sun is shining, it should warm up quite nicely for the rest of the week.  Is it any wonder, we both whisper, "not yet."

Happy Birthday STEPHEN HAWKING, 72 years old ALS patient who for over 40 years has digitally shouted "NOT YET!".

Missed Opportunities

I've been participating in a study on caregiving.  (I don't even know if that is a word, but it's late at night and really, you know, it works. TWERKING made the OED this year, so I think I'm good.)

The study is conducted by phone because what caregiver has time to drive anywhere to answer questions? I'd  rather spend my free time getting a pedicure.  The person calling asks a series of the same questions, every other week for a couple of months.  I guess it is to gauge how close to pulling our hair out we are.

 One of the regular questions is, 'Do you have any regrets?" And I think I always answered "No."  Not because every decision I made was so wonderful, but with that lovely gift from God called forgetfulness, I don't remember every stupid mistake I've made. So now, according to my brain damaged (I have had about 5 concussions) memory, no, I told them.  No regrets.

I wish they'd called today.  I have a huge regret I could have reported.

The man I married and love is not what I would call vertically challenged, but we did figure out that despite his protestations that he was average height, his suits started fitting better when I bought the 38 short as opposed to regular.  Because I am very similar in height, for our entire married life, I was limited in heel height.  ( Pat didn't like me  towering over him.).

Last night our family book club went to Pregos for our Christmas meeting.  Pregos is a wonderful little Italian restaurant in our town and you can dress up or down as much as you'd like.  Pat stayed at home with our daughter who doesn't attend bookclub and I decided to wear my fabulous RED Liz Claiborne high heels I'd bought about 5 years earlier.  I looked great.  I thought, now that Pat is in the Permobile, I will tower over him anyway, so let's get some great spike heels and strut my stuff.

I was able to walk from the car to the table, but that was about it.  My feet were killing me the whole time.  Thank goodness Vincenzo makes a mean martini to take away the pain.  The dinner helped me forget until it was time to put them on again and even one of the youngest members looked at me with such concern and asked, "are you going to be alright Aiti?" I managed to hobble back to the car and finally into the house.  The shoes are now happily ensconced in the Goodwill bag, waiting to be worn by younger feet.

So I think THAT is the regret I could have reported. I should have worn  sexy shoes while my body could do it.

Here's a link to a cute movie about the power of the heel.  And the lead actor, Chiwetel Ejiofor, is in 12 YEARS A SLAVE as well as that Christmas favorite, LOVE ACTUALLY.

http://www.imdb.com/title/tt0434124/

http://en.wikipedia.org/wiki/Kinky_Boots_(film)

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Baby it's cold outside

I remember Dad on Saturday evenings, fiddling with the dials on the radio trying to catch the Ole Miss football games.  It was a long way from Oxford, Mississippi to Northeast Ohio and he was desperate to hear something.  It was also a long way from then to the 500 ESPN channels we have now.  He would alternately scream SHIT or HOTTY TODDY and looking back, I don't know if it was a commentary on the fragility of the signal or our team.  This was between the golden years  of Charlie Conerly and the second coming embodied in Archie Manning. (It was probably around the time that Charlie was making money as the first Marlboro Man. He was a handsome devil and looked good on a horse.)

I now feel Dad's pain.  One of the unexpected consequences of this ALS rodeo is the daily fight we have in the van.  I have never understood the heating/defrosting systems in automobiles. Its why I moved south for goodness sake so that I wouldn't have to mess with the damn things. For defrosting the windshield, I find my VISA card works just fine and I have always kept gloves handy so I wouldn't have to worry about about anything else. I have no problem with turning on the AC in the summer. You just hit a button and it's on.

Unfortuately, one ALS sympton is an out of whack metabolism. Pat runs hot and cold and it is NEVER conveniently. Rather than cold in the summer and hot in the winter, it's t'other way around.  So whenever we've started driving down the road in the van, he's having to tell me how to operate the heating system.  I end up mad because he's hard to understand now and he's frustrated and it quickly becomes one of those "Can this marriage be saved?" issues. Finally, I understood the problem.  

Somewhere near The Company Shop on a recent trip to church I screamed,

"I can't do analog! I'm a digital sort of person." 

 It made me feel better, even if Pat didn't get any warmer from that thought. 

There aren't enough words in the world or My Oscar Speech. You can cue the music anytime it gets boring.

Today I am making a feeble attempt to thank people who have been such good friends, neighbors and  family to us over this past 18 months.

First of all, I am very thankful that our daughters live nearby and come to help, visit and bring their famlies. I'm also very glad that they have taken over the turkey duty. (and here I have to thank the sons in laws too, because they are cookers also and do alot of the holiday feasts.)

We won't get to eat that turkey because it was consumed in Okinawa 12 hours ago.  Maybe next year we'll get a sample.

And I must include in these thanks, our daughters' in-laws. They have treated us as family all along.  Whenever we've had to run to the hospital, whether those scary visits at the ER or the happy ones at the Birthing Unit, our family nurse was there popping in to visit.  She also has a very active prayer group and when I've needed the big guns, she hasn't failed me.  And her daughter gives the most marvelous facials!

Our Virginia extended family has been so wonderful with cards,  notes, emergency babysitting when I couldn't do  and other forms of support we could never thank them enough. 

 Closer to home, we have the local in-laws who have been so very good to us and ours with notes, prayers and help.  

I think we're lucky that our daughters all married sons from fine families.  

The other family that must be mentioned is our church family.  The altar guild brings us beautiful flowers when we can't make it to see them in person. St. Martha's Guild   provided a prayer shawl for Pat that does much more than keep his knobby knees warm at night.  A couple of men came to paint the shed. One family has sent Pat a card every week since his diagnosis. Another lovely woman brings us flan because she knows how difficult it is for Pat to swallow. Others have left bottles of wine, delicious little cheese snaps,  cheese cakes and other delicacies.  I can't forget the friend who seeing my proposed menu on Facebook one night, brought me the ingredients and stayed to visit.  Her husband later brought a play pen for Dougielou.  One family in particular will come over and bring a portion of whatever they're eating and they have provided many a wonderful meal when I was too pooped to prepare.  They have provided smoked turkeys and colorful mums, as well as an offer to carve the pumpkin.  We love the visits, casual drive-bys as well as the drop ins for cocktail hour. Our church secretary will check on us every week to see if she needs to open the door for the healing service.  Our church family will not allow us to be forgotten which can happen with this sort of illness. 

Our non-church friends are wonderful also. Some take us out for Mexican food and another climbed up on the roof and finished painting the windows that Pat could no longer reach. One friend will drop by on her way home from work at Elon U. Just to check on how we're doing.

Faraway family have made the trip. Pat's parents hopped on a plane, and despite his mother forgetting her makeup ( a tragedy for a former Ole Miss Cutie), we had a great time.  His brother from North Dakota and sister from Alabama drove up for a quick visit and we had a lovely time eating chicken pie from our church under the carport.

My cousin, from Michigan who is a speech pathologist, gives me good advice on new technology available to assist Pat's speech. Thanks to her and Mr. Zuckerman for providing a path to reconnect after all these years.

My own siblings have all made the trek at least twice and I think the thing that I appreciate most is that I know they would do it even if I weren't here. They are that attached to Pat, for himself.  

And of course, I cannot forget the grandchildren.  One visit from any or all of them blows all thought of illness out of our heads.  They are wonderfully insane and oftentimes bad, but always beloved.

So you see, there aren't enough words to express thanks for all the kindnesses.  In this way I do think ALS has been a blessing.  All that goodness is out there.  I wonder if sometime, we get these sort of  slaps in the face to appreciate them.  Don't wait for that please.  

Elspeth as a Dire Wolf

Yesterday I felt like a character in the  GAME OF THRONES.  All we've heard for the past three days Is  the cold front was descending from Canada.  We didn't need  Monte Montello from channel 14 to show us his blue screen.  We have the living barometer of Pat, who can be  a Cassandra.

These rapid weather changes are hard on him.  Thank goodness we had an easy hurricane season, we were sort of dreading that.  His joints ache as if he has a sinus infection all over his body and he can't sleep. Lack of sleep means he spends the day just waiting for nap/bedtime and his speech goes all flooey.

  Due to his life long habit of using power tools and no ear protection Pat has chronic tinnitus. If he takes too much ibuprofen, to relieve the pain, then his limited hearing becomes non-existent.  Yesterday was really difficult because we were in the middle of a near 30 degree temperature drop. We watched a couple of good movies but basically just enjoyed visiting with our grandsons who had come to call. We didn't make it outside at all.

At one point Pat even intoned,  "Winter is coming."

 At least his Permobile is more comfortable than the iron throne.

 .

Watchers at work

It's been one of those busy, beautiful fall days.  First we made it down to watch the men working on our daughter's house.

Then after the cold set in, we walked home and promptly started watching a neighborhood tree being felled.

 It's a tough job, watching all these workers but someone has to do it.  And, it's always fun to watch expensive stuff being done that we don't have to pay for.

More Life Lessons Learned Late

Just because you or someone you love has Lou Gherig's, doesn't mean life stops.  Things still happen.  Children from the far side of the world decide to move back home.  The family business must be attended to and sometimes truck tires come flying down the super and hit your front fender.

The last thing happened to us on the way home from Durham VA Medical Center.  It was at the cusp of rush hour.  I was on the inner third lane and there was no where to go.  So I remembered our sailing days when something happens that could lose lives.  I grabbed the tiller of the Dodge Caravan and stayed on course.  I had seen the tire pop off the truck, whether it was on the flatbed or on an axle I cannot say, but it disengaged and barreled toward us at a phenomenal speed.  The trajectory was such that I knew it would either have missed us by an inch or nailed the right front quarter of the van. It did the latter, and only later did we both wonder why the airbags didn't deploy and that was one of the many blessings that occurred in those 5 seconds.  No one else was hit, the state trooper surmised it bounced off us and sailed over the other cars and  into the woods of Hillsborough. We were able to hobble off the highway, as the other drivers realized what had happened and slowed down to let us cross three lanes onto the shoulder.

And then of course, the comedy began.  I couldn't find the hazard button.  Pat had no idea where it was either.  While I called 911, we were both frantically searching for it.  As I was describing the incident to the dispatcher, (and why do they always want to know what color the car is?)  Pat found it. Unfortunately, that day his voice didn't work too well and I couldn't understand what he was saying. He was strapped in  the Permobile in the back. He couldn't lean forward and he can't raised his arms to point.  At this point I was laughing at the whole thing while trying to talk to 911. How could we manage to survive the impact, but not be able to find the hazard button?   Finally, after great effort he was able to communicate to me where it was located and we  settled in and waited for Trooper AJ Gurney, a handsome fellow who was quite kind.

Life doesn't stop and neither do blessings.  If the airbags had deployed, I think many people could have been hurt. I couldn't have controlled that tank of a van and I would have slammed into another car. It was a beautiful clear fall day so the other drivers could see what happened. We had a sweet tow fellow and trooper who helped get Pat out of the van safely. We have daughters who live near enough to come rescue us when things like this happen. And they bring grandsons who are always so interested in crashes and crackups, the conversation is never allowed to get maudlin.

When we first got news about Pat's ALS, I thought I heard a burglar one night.  I was lying in bed and I thought, "go ahead kill us and take everything."  That is known as despair and at that lowest point,  I probably felt closer to Judas than Jesus.  The feeling soon passed and every day since, we feel blessed by life and living.  Some days we feel more blessed than others.