fantastic families and where to find them.

If you are at all familiar with anyone who has a pretty awful disease, you know that for anything to work right, you have to have lots and lots of support.  Garrison Keillor, writing about his dad's final illness, said that for him NOT to have to go into a home, he needed all of his six children. That is about right.  Dad had five children and it took all of us to get him through that last transition to the big grammarian in the sky.

We're  incredibly lucky because we have our gang all within spitting distance. I can  call and one of them will be here within a minute if I need them, but most importantly, they know WHAT is important. And they will figure everything out before surprising me with a great treat.

It took quite a coordinated effort because Pat was still pretty sick, but one bought the tickets and met me at the theater, and another one ran her children to a third one so she could run back to our house to sit with Pat while I was gone.  It took 3/4 of our  daughters, massive coordination and logisitics, but mission accomplished.  Got to see the movie based on Harry Potter "apocrypha" as my sister, BB, calls it.



Here's the trailer.

 http://www.fantasticbeasts.com/

Macgyvering, not Reaganing

Recently Pat and I  were invited to participate in a living with disabilities discussion with people smarter than we who will be inventing things to make people like us have better lives.  They were Duke students of Professor Kevin Caves  (he is the go to tech guy at the DUKE ALS clinic and what he doesn't know about technology isn't worth knowing).

We were asked beforehand about concerns.  One of the questions was, what is the number one thing you'd like to be able to do now that you used to be able to do?  I was stunned by Pat's answer. I thought it would be walk, drive, pick up a grandchild.  No, his answer was  "I want to pee in private."

There is something that you can buy on Amazon called a condom catheter, and it is exactly what it says. It is a condom, but instead of keeping dangerous bodily fluids in, it has a hole on the bottom that you attach to one of those bladders you put on the patients leg or hang from the bedside.  While  I shopped online, I noticed there are no SMALL sizes available.  You can only get medium/large, which is a hoot. I guess since men in these positions can no longer compensate by driving silly cars and outrageous boats, the world has to give them this small consolation.

Now if you remember from a post awhile back, one of Pat's larger concerns when finding out he had a fatal illness that would destroy his muscles and render him an immovable body losing control of his life,  was.."who is going to maintain my beard?"  Although I, however am happy if I have clean underwear on when I get killed in a car wreck; I knew that strapping a bag of urine on his leg wasn't going to work for my stylish guy.

Again, Amazon came to the rescue. We found wine bags that  hide the bladders quite nicely. Then the problem arose that because it wasn't attached to the leg, the urine backed up onto his chair, rendering my meticulous man, wet and stinky.  AHA! pool noodles.  I cut one of those styrofoam pool noodles in half creating a reasonable facsimile of a lower leg,  wrap the bladder around it and  hide it in the bag.

For the first time in over 4 years, Pat can pee in private!

Converse and Cub Scouts

After a pretty nervewracking Saturday, the grands returned on Sunday. Some of them came with fellow Cub Scouts to clean our yard.
Pat, the geezer scout from Troop 36 , Keokuk Iowa on the Mighty Mississippi, was able to get out and thank them.


But MOST importantly, we got to see new shoes.

Little and big things

It started with my cold.  I was as sick as I'd been in years (discounting my bout of food poisoning last winter).
Then Pat caught it, and of course, with an ALS patient, nothing is simple.  Yesterday afternoon was probably the scariest time we've had since the trach.   Infection is the bugaboo of our lives, and when something takes hold that quickly and firmly, you just hold on and wait it out.  Dr. Bedlack had told us Superman Christopher Reeves died from an infected bedsore. Germs are our kryptonite.  We walk a thin line in our house. We have to attack infections quickly, but not use antibiotics so much that they are rendered useless.

On Facebook in November, there is a common thread.  Many of my friends write thankfulness posts.

Here's mine.
I"m thankful for big pharma.  People love to hate them because you know, they are big and they make alot of money and don't seem to care. BUT BY GOLLY...without the extremely costly research, testing and marketing, I wouldn't have had the z-pac to give to Pat when he needed it. SO THANK YOU BIG PHARMA...you've made me a happy camper.

Here's another corporate shout out.  Pampers, Huggies, and whoever else makes baby wipes. If you think about it, if we didn't have disposable wipes, we would have to use rags to clean up messes, wipe faces, etc. And that means more laundry, folding and all that other stuff I hate. So thank you Kimberly Clark, Proctor and Gamble and any other corporation that makes home health care easier.

What about cleaning supplies?  Here's a big thank you to Clorox bleach spray.  We can disinfect the bathroom sink in about five seconds...Plastic trash bags? We just tie them up, toss the stuff and don't have to worry about disinfecting the garbage cans.  Plastic cups, plastic straws?  use 'em toss 'em.   Infection control is inversely proportional to landfill control, but in this case I DON'T CARE...

Thank you  Permobile.  When Pat went back to bed, Thor and I kept watch. I was reading THE IMMORTAL LIFE OF HENRIETTA LACKS but that chair is so comfortable, when I sit it in, I'm able to nap as easily as in any leather recliner.  So I did.

Thank you to our girls.  They took me seriously when I told them not to bring the grands around, but they knew enough to visit themselves.   Clare brought me Kung Pao, Anna brought scotch and we watched a really terrible silly movie,  Laina is bringing St. Paul's Barbque tonight.  Emma gets a pass because there is sickness in her own family.

As Laina texted this morning, it was a dangerous Battle of the Boogers, but we are winning...

...so far.

THANKS BE TO GOD.