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.