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.

Raking leaves is not an activity for those with OCD.  I have other neuroses, non of which interfere with this pleasant autumn activity. My ADDism is perfectly suited for raking leaves and raising children.  Children's messes and noises rarely bothered me.  I was so easily distracted, I often forgot why they were upset and we would just go on to a new activity.

It was also good for our traveling days of following Pat's  ship.  I realized that if I had my passport, glasses and a credit card I was good to go.  A driver's license was handy, but not a necessity.  We had four children which helped too, it was a nice even number to keep track of. They soon learned to pack for themselves and I rarely cared what they wore as long as they were decent. Our youngest forgot to pack extra clothes for one trip and hence she wore the same thing for a week.  She was, I think, around 2. She has since learned to pack more than one set of undies and totes her own children around the world by herself with great aplomb.

This casualness which was so helpful to me with the kids, isn't so good now.   I find that I have to notice messes and have learned to pick up trash immediately, because there isn't anyone (Pat) coming behind to do it.  This has been one of the hardest lessons.

Pat is the clean freak in our relationship.  He told me one of his biggest fears when we learned about the ALS was that  his beard would get untidy because he wouldn't be able to trim it properly.  I have learned to do that and to also pick up all the bits of leaves that come in through the doors on windy fall days.

Pat is very good about not nagging me when I miss something on the floor, but I am getting better at keeping things straight. I think this marriage can be saved.

You are my witnesses

Pat has a difficult time shaving bits of his neck now and I have to help. He's always telling me to really bear down on the razor.  If for some reason, he succumbs to death by my nicking his jugular vein or carotid artery, I will need to have this on record before I become a guest of the state....

http://www.medicaldaily.com/nj-mans-17-inch-beard-wins-world-beard-championship-competition-kicks-no-shave-november-cancer

Fred Astaire He Ain't

We had the opportunity awhile back to attend Alamance County DANCING WITH THE STARS GALA.  It was a local whoop de doo and our son in law was one of the stars.  This was a fundraiser for Little Pink Houses of Hope, an organization that provides really cool beach vacations for families undergoing the stress of dealing with breast cancer. It is a very worthy cause and one I can get on board with because it is about fun, and I'm all over that.

Our dancer didn't win, because I think he just doesn't have the twerking gene, but also, one of the other stars had a secret weapon...he was a tap dancer, which blew all of the competition out of the house. It was so much fun.

On the way home though, Pat verbalized something I'd been trying to gel in my head.  He said, "This is how well organized cancer causes are. This fundraiser was so specialized.  This was for vacations.  ALS is still just trying to get research money and just get the word out."  I think the Catfish Hunter ALS closet in Raleigh has loaner beach wheelchairs if you want to borrow them.

The ALS association is doing a grand job of getting the word out.  There are walks, beer festivals and other things but compared to the behemoth that is the Susan Komen effort, we are the red headed step children of the disease front.  We're jumping up and down screaming..."LOOKY HERE LOOKY HERE!"

And again, it's all about numbers.  EVERYONE knows at least one family that has been affected by cancer. In my own family, that's probably how we're going to bite the big one.  Pat's the first person I've ever heard of other than Lou Gehrig and Steven Hawking with ALS.  But, the more we talk about it, the more the word gets out and maybe, just maybe..our grandchildren will end up twerking- or tapping- for an ALS fundraiser.   We can only hope...


http://vimeo.com/77240992



http://www.littlepink.org/dancing-with-the-stars-gala/

You Have to Be Carefully Taught

http://www.youtube.com/watch?v=-JjiaRJqKIU

This song from Rogers and Hammerstein's SOUTH PACIFIC deals with racism, but it applies to actually anything passed on from generation to generation.  The Bible tells us that the sins of the fathers pass on to their children.  I think that's true, if you consider the cycles of poverty, abuse, lack of self responsibility etc.

But it also means you can pass on good things too.  Respect for teachers/education, hard work and an understanding that you are responsible for your health and happiness are some things that are passed on.

Taking care of family members has been something that has passed on in my family.  My parents took in Mom's siblings two times when needed.  One was for a short time and Aunt Clara went on and became a contemplative nun in the mountains of New mexico.  Uncle Booster came to live with Mom and Dad for the last couple of decades of his life.

What this meant to our family is that for some of us, we could not count having our own bedrooms much less a bed to call our own.  For the last seven years my brother lived at home, he slept on the couch.  I don't remember him ever complaining about it.  For awhile, my younger sister slept on a pallet in the foyer.   I never heard her complain either.  (This was during her  "Little House" years and I think she pretended she was living on the prairie in a small cabin.)

What we learned from this is that taking care of people can cause serious disruptions to the family. Our parental units' tiny fuses became miniscule

. We learned to time bathroom visits on a microsecond basis.  What we also learned was that my parents would have done it over and over if a need arose.

When my father could no longer live by himself after Mom died, and he was disabled due to cancer, my siblings took turns coming  every  weekend to give me a break; even my Florida sister who had (and is still along with her husband) managing the care for their multi-disabled son.  I spent most of that down time sleeping.

 In all the years that my parents lived near us and were frail medically, my siblings never  second guessed how I was handling them.  I tell this to people how well we all worked together and then  I hear others' horror stories.

Now these same siblings of mine are taking time out of their busy lives to come visit us, now that we can no longer visit them.

 I am thankful that we were carefully taught.

They're playing our song

We are really thinking Pat's going to be around for awhile, but we went ahead and planned our funerals with our Rector. 

 I'll go pre-pay at Rich and Thompsons and then the girls (who SHOULD be prostrate with grief) won't have to do anything but drink martinis and receive multitudes of mourners.

One word of advice, I wouldn't wait until you get a deadly disease. Go ahead and do it now if you know you're going to stay put for awhile.  Otherwise it can  be a little depressing.  For some reason, it didn't depress us, I think because we spent most of the time trying to remember the exact Bible verses we wanted.  Somewhat frustrating which kept the other thing at bay.  

The music was very easy to pick though.

Square Pegs

The neighborhood where I walk in the mornings has very old pin oaks lined up between the sidewalk and the street.  Their growth area is about two and half feet across, which leads to an interesting phenomena.  The massive trees are all rectangular.  It's a good object lesson for young children starting to discover nature and then trying to capture it on paper.  They assume trees are round, but, if you show them the trees of Davis street, they will see another sort.  You can't quite fit that round tree into that rectangular plot of ground.

Amyotrophic Lateral Sclerosis is like that.  It just doesn't quite fit into any clear category. And, like those trees it seems to morph into something else, and unfamiliar.  In fact, when our daughter and I attended the ALS conference in Durham last year, the keynote speaker, Dr. Richard Bedlack of the Duke ALS clinic (and Pat's doctor) spoke to that.  He said the more they learn about ALS, the less they know.  They're not even sure if it is a true motor neuron disease.

No one even knows how many people have ALS.  That's why it is so important for those who have managed to be diagnosed with it get on the ALS registry.  In numbers, there is power.

http://www.alsa.org/als-care/als-registry/

ALS was first diagnosed by a French Dr. Charcot and until our favorite baseball player told us he was the luckiest man in the world, it was known as "Charcot's Disease."

Here's the link to the Wikipedia page if you're interested.

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

My point  here now is that AIDS/HIV was unknown until really the 1980s and now it is in many cases considered a chronic disease due to medical advances. That has only been 30 years... The sheer numbers or lack of them often determine whether or not a disease will be tackled by the major pharmaceutical companies.  We've known about ALS for over 150 years.

Sometimes

I had quit praying for the last couple of weeks.  Life got in the way.  I had to accommodate new equipment, medical appointments, family doings and of course, I'm trying to get through the Harry Potter series by Halloween so I can watch the wicked Voldemort get his comeuppance by All Saints Day. We all have our personal ambitions.

I usually do my serious praying in the sauna.  It is the second sauna Pat has made for me and I am exceedingly grateful to him for doing that. But I'd spent recent saunas planning the day, weeks and months and so God got a pass from me.  It was not deliberate.  I just forgot about it all.  And then one day last week I remembered, I started with the usual one, "Our Father," and burst into tears.  It was like the time my parents lost me at the Canadian Exhibition.  I cried because I thought they had abandoned me to a Canadian orphanage and then when Dad showed up to recover me, I cried even harder.

I don't understand prayer.  I doubt I ever will. I do think that though Lucy has it right when says in THE CHRONICLES OF NARNIA, "Sometimes he likes to be asked."  Although I know the Supreme Being is not a untamed lion, I think about that when I am hesitant to ask for help.

Prayer is as ephemeral,persistent and strong as those pesky spider webs I am forever walking through.  It is our link to heaven.  It is always there and we just have remember to not brush it out of our face, but grab onto it with all our hearts.  It is through prayer, ours and others, that have helped us through this.

I went to the Catholic website for healing prayers.  I figured they've been in the business for over 2000 years, they should know what they're doing.  Here's my favorite.

"Touch gently, this life you have created. Now and forever more." Amen.

He was hoping for the Moon

We're getting a real therapist today to help with Pat's stretches.

My therapy consists of pulling on his arms and/or neck until he screams in pain. The clinic was less than impressed by my methods and thought to do some quick intervention.

As soon as we were notified of this home visit, Pat said, "I hope it's Daphne."  He told everyone at the soccer game last night he was getting DAPHNE.

This morning, WES called.  He's coming at two.

Pat is hiding his disappointment quite bravely.

Above All, Do No Harm

This code for any medical caregivers applies to me.  I think I violated the basic tenet when I shoved Pat out of bed the other night.

Of course, no action has no consequences and consequently, I've not slept since, wondering when I was going to do it again.  And this morning's paper had a big story on adults dying from bedrails. I guess the solution is to hire someone to stand over us and make sure it doesn't happen again.

Perhaps one of those laid off during the government shutdown?

Here's a good story from an Ohio author James Thurber that has absolutely nothing about pushing people OUT of beds but I thought about it anyway.

http://www.newyorker.com/archive/1933/07/08/1933_07_08_011_TNY_CARDS_000228579

The Naked Valet-part deux

 THE MORE THE MERRIER is a very funny movie regarding the overcrowding of D.C. during WW2.

The seemingly prissy, very cute Jean Arthur is coerced into letting two men room with her for a couple of days.  The older one is Charles Coburn and the hunky one is Joel McCrea.

Jean Arthur's character devises a morning schedule that breaks each minute of the three characters'  preparation time into seconds so that they can all bathe, dress, eat breakfast, and get out the door on time.  It is, of course, a shambles.

Our mornings are sort of like that now.  I have it all planned from the minute we finish reading the paper.  I get Pat ready to shower, I run down fix my oatmeal, I help Pat afterwards, and then I fix his breakfast.  While my oatmeal is cooking I clean equipment and make the bed.  While Pat eats his breakfast I go for my walk.  While I brush my teeth, I clean the kitchen and run the dishwasher.  While I swish the mouthwash, I shower.

 For some reason, I have forgotten to allot anytime for me to dress and it is always the last event to occur. I can't seem to figure out how to fit in that critical part of my morning. I throw something on, usually  from the closet and not the dirty clothes hamper and race out the door.

There was a remake of that wonderful move, starring my beloved Cary Grant and another favorite, Jim Huttton. The girl is unimportant, but it's playing on TCM this week.   Not nearly as good, but Cary is always fun to watch.

Nitey nite

The whole point of sleep hygiene is to let your body know it's bedtime and it's time to settle down.  Also, it is a very civilized way to live.  We have most of our best conversations at night when we've been in touch with all the girls and know that everyone made it through the day safely.
 Sleep hygiene is a wonderful thing.  And very simple to do.

1. Establish a regular bedtime and wake up time.

2. Starting 2 hours before your regular bedtime, don't look at a screen that has any sort of backlighting.  TV, computer, smart phone anything.  An e-reader is okay if  you have to use a lamp, but not one that is backlit so those new tablets are a no-no. We DVR anything we want to watch that comes on during the blackout period.

3. At night, turn the lights down low.  In the morning, either turn the lights up as bright as they will go or stand with your face toward the sun. This lets your body know that you are serious about waking up.

4. The bedroom is not for reading, watching tv, or fighting.  It's only for two things and one of them is sleep.  The other isn't playing parcheesi.

5.2 hours before bedtime, listen to music or books on tape, or talk.  But whatever you do, make sure it is low key.  This is not a good time for heavy exercise or even a walk.

Another thing is no drugs.  We cheat on that because of Pat's situation, but at the most he gets 1/4 of an ambien once every other week.  We use melatonin for the most part, but really the best thing is turning off the electronics.

http://www.youtube.com/watch?v=sal_pp_ptJQ

Attitude Adjustment

That was the catch phrase when I was subbing quite a bit.  This or that kid needed an "attitude adjustment."

We needed one the other day.  Pat had had a rough day and we knew why, it was lack of sleep.  Sometimes that just happens and it wears him out for the following day. It was completely our fault.  We'd been ignoring our sleep hygiene for the previous few days. And it really affects both of us.

Saturday, we were extra good about the sleep hygiene thing. But it wasn't hard. We were watching the Ole Miss/ Bama game and it wasn't much fun, so we were able to turn it off.

The next morning Pat was  much better after a good  night's sleep. I told him I knew he felt better and he said, " I know. I didn't say anything because I don't want to jinx it."

I looked at him and said, "You know, instead of thinking that  way about it, we need to just be grateful for when you do feel good.  Go from an attitude of fearful anticipation to gratitude for where we are now."

In  LAMB, The Gospel According to Biff, Christ' Childhood Pal,  the writer is bewildered by the concept of  living in the now.   "Where's the dread? Where's the guilt?" he asks Jesus.

Living with Amyotrophic Lateral Sclerosis is a neverending exercise of living in the now. Right now Pat is watching DEADWOOD and  I have to go get Elspeth her booster shots.  I thought we'd be done with that when the children left home.

 

When I was googling these two images, it struck me that both of these works are about sinners and the redemptive power of love. Both are excellent; but not something you want to enjoy with your grandchildren.

 All this sin and redemption is making me think that Ole Miss could have used a savior Saturday Night, but I'm not sure there are any Manning grandchildren available right now.

At least I'm not texting.

I've not had so many complete strangers mad at me in my life.  I've been the recipient of tailgating, ugly looks, honking horns and the hatred of one gray granny bunhead who flipped me off as she zoomed past me when she decided I wasn't entering I-85/40 fast enough. Apparently for her, elder abuse is a two way street, and one on which you'd better be speeding.

My problem is not that I cannot handle the van, my problem is Pat's neck which is not as strong as it was six months ago.  I am afraid of jackrabbit starts, quick stops and dangerous curves. I am nervous his neck will just snap in two and he refuses to wear his neck brace.  I now go the speed limit most times, take curves at a reasonable pace  and accelerate carefully which I guess just ticks some people off no end.


I was telling one of our Sons in Law (and from here on out, I am just going to refer to them as our SONS because that in laws stuff is too confusing. We have four daughters- no sons- but four wonderful men  who married them and fathered  our grandchildren. We regard them as more than the legal entity that term implies. So for ease of writing, from here on out, you will just have to remember, although we didn't raise them, we still claim them -right after their parents.) Anyway our THIRD son, ( and you know that doesn't seem quite right either-I am open to suggestions here, people).

 ANYWAY I was telling that kid who married our third daughter about these issues.  As he sipped our scotch  he said,  "Of course, you drive slowly and irritate other people.  You're an old person driving a handicapped van."

 Again, elder abuse cuts both ways.

The Naked- Valet- part one

About the time I had to start helping Pat get dressed in the morning, Downton Abbey fever took hold.  It was just about all anyone at church talked about (except of course for Jesus-we are a church for goodness sake).

I remember I was helping Pat put on his shirt and started making conversation to get over the awkwardness of the moment and said, "It's supposed to be a nice day," and then I started laughing.  I told him, I felt like I should add a "m'lord" after those kinds of comments.  That's when I knew we could be happy even with this ALS sword hanging over us.

Of course, the big difference here is that I have Lord Grantham's chubby body  and Pat has Bates' leg brace and gimpy walk.

Just do it

Isn't that the slogan for a shoe?  Nike?
Anyway, my workouts have worked out so far.  Most days after Pat is dressed and sitting in the carport eating his breakfast, I slather my feet with vicks, put on some socks and my tennis shoes, (which are really not called that anymore-they cost too much for that nomenclature) and head out the door for a  2 mile walk around the  neighborhood.  I know it is two miles or more because I use MAP MY RUN and there is a little electronic woman in my phone who periodically announces my time, distance and speed.  The first couple of times she mouthed off, I jumped in my stride. It was sort of spooky, but now I try to guess when's she's going to start talking and it makes the walk a little more of a puzzle, which is more fun than just a plain walk.  MAP MY RUN also sends me weekly emails telling me how wonderful I am.  No kidding, the subject line is "Your Greatness at a Glance."  I wonder what the subject line would be if I didn't walk at all that week due to illness or something else..."Your Big Fat Slugness at a Glance?"

The other thing I do on a regular basis, my non-walking days, is Pilates.  A big part of being a caretaker is lifting and if you've ever watched Nurse Jackie you know she's addicted to pain meds because of all that. To save your back, you have to have strong abs and Pilates is all about core workout.  I like the "Ease into Pilates" on Amazon Prime.  It's a good, all around 30 minute job and she doesn't have us do those damn "hundreds."

We still Rock and Roll

This week in the News and Observer, there was an article about using electronic sensors to let people "age in place."  That's the newest catch phrase in the national conversation on what to do with all us old people.
These sensors will let the kiddoes know if granny/gramps have brushed their teeth, taken their vitamins and generally still managed to live through the day.

The funniest part of the article was that the inventors of this system are having a difficult time marketing it to us, the members of the narcissistic-est generation because none of us wants to admit we're senior citizens.

I was thinking this would be good for us. Part of the job of being a caretaker, whether it is for your baby, your parent or your spouse is sitting around waiting for something to happen.  Those sensors would enable me to find out when Pat awakens from his nap.  I usually sit in the living room watching SUITS ( those lawyers are all so cute, except for Louis who could play Peter Pettigrew he's so ratlike). That way I can hear when Pat starts to stir and if  he's having difficulty getting up and about I can help.  But, if I had something like those sensors, I could go out and garden.  I would still be within steps of the bedroom, just outside.

I told Pat about this and he looked at me and said, "But I'm not a senior citizen."  So there you go.  The man can hardly walk, and he's still in denial.

Below are the links for the realists among us.

http://www.mylively.com/

http://www.newsobserver.com/2013/09/22/3212496/nonagenarian-valley-produces-next.html

Why do we do anything?

I know some people wonder why I'm writing this blog.  I can only attribute it to Pavlov and his dogs.

A while back I was a columnist for one of the local papers in our County of Alamance.  No restrictions on what I wrote, I just had to keep it clean and free of politics.  No problem there - I was writing during the Clinton Administration, I was able to avoid both simultaneously.

Whenever I had a dearth of ideas, I would go for a stroll around the driveway or out in the horse pasture.  I never left the property-for some reason, there were too many scary dogs. (BIG ONES- I have since learned it is the tiny ones that have the sharpest, quickest teeth.)

Within 5 minutes of walking, the stories would just emerge from  wherever they'd been hiding and I could knock the column out and get it in right under the deadline.

Over the past 14 months since we found out that Amyotrophic Lateral Sclerosis was going to be a part of our life, I've had a couple of people mention I should write about it. I had to wait until  I had something to share and  I didn't want to do write if it was just going to be a whiney, maudlin, Pat as posterboy sort of thing. 

Then, when I began my walking regimen about a month ago,   I started thinking about this ALS Rodeo and so there you are. I honestly don't think this is therapy for me. I'm not sure why I do it, but I think it has something to do with those dogs that salivate at the sound of a bell.  I walk, I write.

And, if this ever turns into a whiney, maudlin, Pat as posterboy sort of thing, then y'all have the right to grab your mouse and give me a great big ole cyber-slap in the kisser.  

A Bed Bug we love

September 16, 2013
Our birthdays are a week apart, so we took ourselves to the Umstead Hotel and Spa in Cary for a two night stay with our daughter and her young son.



It's a pretty fabulous place, very Zen.  The bath products all smell like an herb farm in France and we opted for the handicap room.  NOT the ADA room, which we found to be a critical point.  Although there were grab bars around the head, there were none in the shower and there was also a small, three inch step into the shower which may not seem like much, but to someone who can't lift their feet to put shoes on, it is as high as Everest.

We managed both things tho, by pulling Pat's permobile closer to the shower and using it as a walker/grab bar and by putting towels on the floor (amazingly, they weren't non-skid but rather a lovely, serene, incredibly slick organic tan tile). We also had to request a bath chair as there wasn't one in place.

There is a lovely paved, walk around a small lake (I think it is really more of a large pond-but that's just semantics.) It is impossible to access with a wheelchair, so we hiked up to the SAS campus and found the small paved path that led down to it there. No problem, and I needed the extra walk.

We opted against taking Pat's walker due to having extra baby equipment with us and we found that by putting his Permobile on the lowest speed and with me sitting in it, Pat could use the handles and walk behind while I sat and steered.  That way we both got our walks, but I still have a hard time steering a straight line, that joystick is so tender.

These however were minor glitches  in the overall scheme of things. Glorious weather, Clare spotted Taylor Swift in the spa, some kind soul picked up our bar/dinner tab and Pat dangled his feet in the pool.

The room service was the best Pat had ever experienced and back in the day when he had the use of his appendages, he was a world traveler so he knows.  It is pricey, but we opt for these short stays at great places and eat out less at home

Can't even count on those

I thought I would be a widow by now. Hell, I thought I was going to be a widow on Boxing Day 2011.
Christmas Night  of that year,  I was lying awake next to Pat, who was doing his usual fitful sleeping and remember thinking, "he's going to be dead by morning and I'm not going to know why." Later in the Spring of 2012, I had a dream that my mother visited us from the other realm.  I kicked Pat to make sure he was still with me and she wasn't here on a "gathering" mission.

Pat had been sick for so long and then lost weight so quickly and deteriorated in other ways so quickly that by the time we got the Amyotrophic Lateral Sclerosis prognosis (dead 2-5 years from diagnosis) in May of 2012, I just assumed he would be gone within six months. I planned everything; what I would wear to the funeral, where I would sleep that night and wondered if our granddaughter would come stay with me for a couple of nights before I headed south to visit my sister in Florida.


Anticipating sudden, yet expected death does weird things to your mind.  Pat asked me to go to Barnes and Noble and buy him a book,  the second of the Rick Atkinson WWII series.  I looked at him and thought, 'Is he going to be around to finish it? Won't it depress him if he dies before he finishes that book?" and then I realized, "No, he won't be depressed, he'll be dead." Out of guilt, I went and bought him 10 books.

I wasn't the only one. My siblings all googled ALS, saw the stats  and rushed  here in  the summer of 2012 to get what they thought would be their last look at Pat.  We had a grand time and have had a couple of other visits with them since.  (In fairness I have to say that Pat's family was dealing with a series of serious illnesses and other things. They couldn't make it for visiting until a year later when things all shook out and then we had good times with them too.)

Another thing that happened was my health deteriorated. I kept on thinking, why should I go for a walk?  I don't want to miss these last few days with Pat worrying about my figure. And then in one week, my back went out and I got the cholesterol report.

So I guess the lesson is..Pat's still here, still got ALS, still reading those books and I'm trying to take care of me so I can take care of  him.

 I guess the only thing we can count on for sure is we will have to pay taxes.

Some take their jobs too seriously

Our Westie, Elspeth, has become over protective of Pat when he's alone outside sitting his in wheelchair.  So far this week she has bitten the Fed Ex and the UPS guys.

I don't know what to do.  I do most of my shopping online..

 

The Teeny Tiny Terror of West Burlington.

WMDs

Of course, some people look at a person in a wheelchair and the first thing that comes to their minds is TERRORIST!

I am, of course, referring to the TSA.

This past summer, we had to go retrieve our granddaughter from RDU and although we received special treatment in the fact that all of us; Pat, our grandson Will, and myself; were able to go into the restricted gate area; Pat also got special treatment of another kind.

He had to go through a complete search that including standing so they could disassemble the chair, they took apart his telescoping cane and they made him expose his belly so that they could make sure he wasn't wired for bombs.  That last bit is completely understandable though, since he has a diaphragm pacer that does make him  look remarkably like a person wired for suicide.  The pacer unit consists of a little box with a cable that attaches to a USB port on his chest.  (more about this in a later post).

As Will and I stood watching them take apart the wheelchair storage bag and check out his insulated bag of BOOST, our grandson turned to me, arms outstretched  in dismayed disbelief. "Why do they think Pappy has a bomb?  He can't hardly do anything anymore."

I guess they were right to be vigilant though, because just a week later some guy in a Wheelchair of Mass Destruction DID show up at an airport in China.


http://www.usatoday.com/story/news/world/2013/07/20/beijing-airport-china-explosive/2570855/

It's all in your point of view or what you see is what you get

We took our grandson to see a great exhibit at our local Arts Center.  "The Art of the Brick" has been called one of the "must see" attractions of the year. In the nation! 

And WE HAVE IT!!!  

http://www.artsalamance.com/joomla/index.php?option=com_content&view=article&id=71

 That's Pat and Dougielou checking out the Lego based art by Nathan Sawaya.

Later on as we were getting ready to leave, I was pushing Dougielou in his stroller and Pat was leading the way with his Permobile.  As we were leaving, someone  made a very sweet comment about my being a fabulous caregiver.  And I  know she meant well; I know it.  But herein lies the issue with so many disabled people.  Others see a man in a wheelchair.  I see Pat.

Support isn't just about foundation garments

The other way we made it through the shock and awe period was the support we had from family, friends and church. ALS is too scary to face alone.

If you or your spouse gets the kind of news we got, you probably already have your family sort of fixed and your friends are already pretty well established.  But if you don't have a place of worship,  GET THEE TO A CHURCH!

A church is a great place for those big family celebrations, weddings, Christenings, Anniversaries, etc.  It's also a great place to go when things don't work out quite the way you thought they should.  Someone (and I'm not naming names here, but I think we all know  to Whom I am referring ) needs to be held accountable and if you don't have a working relationship with Him, now is as good a time to start as any.  You have to put on a happy face for your friends and children, but the Big Guy knows what you know and feels what you feel so alot of time you just sit there and cry..and then you go out for lunch and if you are an Episcopalian like we are, then a glass of wine is allowed too.

If church feels not right for you then there are support groups available, on line, in person and via telephone.  If you are reading this, then you have access to a computer which means you can Google just about anything and find some sort of help. Better to reach for the mouse than that bottle of Vodka beckoning you from the other side of the room.

Here in North Carolina we have the Catfish Hunter Chapter of the ALS Association.  Nothing you do is going to change what has happened, but it can help change the way you approach this beast called Amyotrophic Lateral Sclerosis.
http://webnc.alsa.org/site/PageServer/?pagename=NC_homepage

I would only caution one thing.  Be careful what you are reading, INCLUDING THIS!  If it makes you feel low, then by golly, go read the funnies.  You don't have to read every depressing thing ever written.

Comedy is Tragedy Plus Time

That's Steve Allen's quote.

Unfortunately for those with ALS and their families, time is something we don't have a lot of so we have to get past the tragedy or else our few days left are going to be spent with much wailing and gnashing of teeth.  And there is too much life around us for that. We HAVE to participate and by golly we are going to have fun doing it!

Not everyday is high hilarity.  But everyday is good, even the ones that aren't because they are one more day we have wrested away from this stupid disease.

Upon learning we were blessed with Amyotrophic lateral sclerosis (ALS), we did what I think most people do in that situation, went home and stared at each other for three months.  We went to church, work and hung out with family but alot of our down time was just staring.  That is known as the "shock and awe," period.  Which was punctuated by infrequent screams on my part whenever Pat tripped or made a funny noise.  A 1/4 of an Atavan helped me through that as well as going to our family therapist.  I also re-read Meditations by Marcus Aurelius.  Now there's  a guy who knows how to put your life in perspective. (Favorite line- "Man is but corpse with a soul." And, I think he stole that from an earlier philospher, Epictetus)  I finished the book first, then we were released by our therapist who helped us plan our first overnight in a nice mountain hotel and reassured us we would be happy again.  Finally, I was able to quit the atavan after about six months.  And holy cow, after time we did find that we were able to be happy again.  Even with this damn disease hanging over us. 
My GOAL for today is to learn how to spell Amyotrophic Lateral sclerosis.  I always have to google and then cut and paste it which hoses up my formatting. Sorry about that...

September 12, 2013

It's fun to walk early in the morning to see that no matter how much my life has changed, some things are eternal.  I love to look in the cars and see children being shuttled to school by their parents and it is the same as ever.  They are FURIOUS that their parents exist, much less have to be their chauffeurs.  They would much rather just pretend they sprung up out of the earth like that damned wisteria I cannot conquer in my yard. Both are pretty to look at but then  both the kids and the plants wrap their tendrils around their support systems, sucking all the life juices leading to death of those silly enough to get involved with these two disparate creations of God. 

Nowadays tho, instead of looking vapidly out of the window trying to ignore the abundant life before their eyes, they are focused on texting their friends with whom they rarely make eye contact...it is all via smart phone.

What, are you asking does this have to do with ALS (amyotrophic lateral sclerosis otherwise known as Lou Gehrig's)? I recently went to the doc and found out my cholesterol was SKY HIGH, like Scarlett O'Hara's cotton prices and have to start doing something if I don't want to leave my wheelchair bound husband behind in the care of his four lovely, addled daughters. (I might also add that they are my children too-no matter how much they argue that fact..I was there, I remember it all.)

In a desperate move to NOT have to take the dreaded statins, I am walking every day...we shall see how long this lasts.