At age 62, she told me right away that she had early-onset Alzheimer's disease, which runs in her family. She told me she knew she would get it, but was still surprised when it happened.
Little things. Like too many mistakes when playing piano for her church.
We clicked immediately. I invited her in the house, gave her a tour, and we hugged goodbye.
Today I invited myself over their house for lunch.
First, though, a report from her husband Tom, which he sent out to family and friends.
I made new paragraphs and capitalized a few things.
Jan. 27, 2015 – Shirley was readmitted to the Alzheimer’s clinical
drug trial. She had been rejected last
year because of an MRI showing microhemorrhages in her brain, but Merck changed
the criteria and the microhemorrhages no longer disqualify her.
A radiolabeled PET scan showed the presence
of the beta-amyloid plaques that are thought to cause Alzheimer’s disease, and
that result allowed her to enter the trial.
Shirley’s been on the drug for about four months and will be on it for a
total of 26 months.
It’s a double blind
study, so we and the neurologist don’t know whether she’s on the placebo or the
real drug; 1/3 of study participants are on the placebo. The drug is designed to slow the progression
of the disease, but it isn’t a cure.
So
far we have seen occasional instances of unexpected memory loss and inability
to properly do routine activities. The
biggest disappointment so far is that Shirley has had to stop playing the piano
at church. She is finding it more and
more difficult to play, and she no longer reads music well.
We are disappointed at this and other minor
evidences of decline, but we are not discouraged. We are confident the Lord will give each of
us the strength we need to get through whatever is coming. We have no illusions about the difficulty that
the future may hold, but we are trusting the Lord to glorify himself and do
good to us now and in the future. The
neurologist says, if the drug trial doesn’t help, that Shirley probably has
about ONE TO FIVE YEARS before significant problems develop. We plan to use that time to enjoy life and do
good to others.
Mar. 19 – Our 38th wedding anniversary.
Tom is quite a reader. Let's visit some of his book shelves.
Shelves of Christian books. I'd never heard of George MacDonald, 1824 -1905, a Scottish minister and author of many books including The Princess and the Goblin.
It's possible I might have read this.
We discussed C S Lewis, author of Chronicals of Narnia, as well as Christian books such as The Screwtape Letters and Mere Christianity. Read about this fascinating man, who married a Jewish woman, Joy Davidman. Hence his book Surprised by Joy.
Here's the study. Treadmill on the right.
Comfortable office. Tom has serious back problems. We talked all about bad backs. Scott and his bulging disks that are gradually getting better and my back operation five years ago.
Tom keeps his reading material on his bedside table.
I keep mine on the husband's side of the bed.
I just love
It won the Pulitzer.I lost my other Stegner book and paid $18.95 for it.
And, no, it's not gonna turn up.
They attend b/c Tom likes the doctrine that's preached. He's a deacon there. My deceased ex-husband was also a deacon in his Presbyterian Church in Ardmore, OKLA.
We had my pumpkin lentil soup. Shirley made these delicious butter cookies, substituting peppermint extract for vanilla, which she didn't have.
We drank my favorite no-caffeine tea
Shirley and Tom attended the wedding of their son and new dtr/law in South Korea. He had been teaching English there when they met.
The entire family are devout Christians.
Some of my best friends.....
Ready to visit the railroad in the basement?
Scott was very excited when I told him about it.
These trains - ho gauge, the most popular, but smaller than Scott's - take up the entire basement and go in and out of little hideaways.
They have a gas leak which is being fixed outside the house.
We drank my favorite no-caffeine tea
The entire family are devout Christians.
Some of my best friends.....
Ready to visit the railroad in the basement?
Here are the basement steps. I was really careful when I went down. They're very narrow. A friend of theirs slipped and went down on his butt.
See the storage area? Tom is trained as a chemist and knows how to build things. His late father/law who died from Alz disease helped build the train platform.
As Tom said, Shirley is one of the healthiest people he knows, except for her mind.
We used to say that of my dad when he was dying of cancer at age 58.
Shirley's dad made a model of the house for the Railroad.
When I got home from the Sanders a package was awaiting me. My friend Iris is so thoughtful. She reads what I post on FB and knows I love pumpkin.
"This coffee is damn good," I wrote her on FB.
I put it in a glass cup so you could see it.
When I finished with the grounds, I threw them, well, on the ground outside. Good for the soil.
Then I finished up my grant for New Directions.
My fab accountant Michael will fill in the financial info.
Hmmm. Dyou think I'll ever fall asleep.
Tom told me some things he and Shirley enjoy watching.
NCIS. I watched one episode on Netflix, didn't understand what was going on, so will stick with my Blue Bloods and Person of Interest.
He also mentioned The Blacklist. I'll give that a try, as well as 24, which is not on Netflix.
Here's my Christmas window sill. Click to enlarge.Gave Grace a little paper tassel Iris sent me with her gift. Also removed the snow globe in the back. Shook it up for Grace and then Max, who promptly dropped it on the floor. Shatter-shatter-shatter. Isn't that a Rolling Stones lyric?
After I finished my 3-page grant proposal AND a cover letter I needed to recover from sitting so long, so I went for a walk in the neighborhood.
See the mama and baby stork on the right? I'd wrin an article about Ralph Nelms, the sculptor, for the Inquirer. First saw his work at the old Upper Moreland Library in a display case.
Ralph lived on Silver Avenue. He was a bus driver in his retirement years and he learned to carve wood. Turns out he had ALS. Before it got real bad, he brought the stork over.
This is a lit-up tree up the street.
A neighbor works here.
Gateway Petroleum Technology specializes in repairing gas dispensers at gas stations. Call the number provided for more information about its services.
Home Sweet Home.
Okay, gonna go upstairs now and work on my novel. I'll listen to some Couperin, played by my piano teacher at Goddard College in Plainfield VT.... Ray McIntyre.
I mailed Shirley the poem below. Handing it to Mailman Ken, I said I wrote a poem for my new friend.
Is that the one you went over for lunch yesterday?
He listens.
See the storage area? Tom is trained as a chemist and knows how to build things. His late father/law who died from Alz disease helped build the train platform.
As Tom said, Shirley is one of the healthiest people he knows, except for her mind.
We used to say that of my dad when he was dying of cancer at age 58.
"This coffee is damn good," I wrote her on FB.
When I finished with the grounds, I threw them, well, on the ground outside. Good for the soil.
Then I finished up my grant for New Directions.
My fab accountant Michael will fill in the financial info.
Hmmm. Dyou think I'll ever fall asleep.
Tom told me some things he and Shirley enjoy watching.
NCIS. I watched one episode on Netflix, didn't understand what was going on, so will stick with my Blue Bloods and Person of Interest.
He also mentioned The Blacklist. I'll give that a try, as well as 24, which is not on Netflix.
Here's my Christmas window sill. Click to enlarge.Gave Grace a little paper tassel Iris sent me with her gift. Also removed the snow globe in the back. Shook it up for Grace and then Max, who promptly dropped it on the floor. Shatter-shatter-shatter. Isn't that a Rolling Stones lyric?
See the mama and baby stork on the right? I'd wrin an article about Ralph Nelms, the sculptor, for the Inquirer. First saw his work at the old Upper Moreland Library in a display case.
Ralph lived on Silver Avenue. He was a bus driver in his retirement years and he learned to carve wood. Turns out he had ALS. Before it got real bad, he brought the stork over.
This is a lit-up tree up the street.
Gateway Petroleum Technology specializes in repairing gas dispensers at gas stations. Call the number provided for more information about its services.
Okay, gonna go upstairs now and work on my novel. I'll listen to some Couperin, played by my piano teacher at Goddard College in Plainfield VT.... Ray McIntyre.
I mailed Shirley the poem below. Handing it to Mailman Ken, I said I wrote a poem for my new friend.
Is that the one you went over for lunch yesterday?
He listens.
ODE TO SHIRLEY SANDERS
Shirley, you would say it
was the Good Lord
who brought you traveling
down my quiet street.
I couldn’t agree more.
Kindred spirits, I
thought, as your white hair
swung with your every
step.
Even when you said “early
onset,” it seemed
“right,” I know not why.
Oh, I have known the
Alzheimer’s crowd.
Gramma Lily, short like
me, with a size
4 shoe, was carried off at
84. We drove
her to Royersford, she,
belted into the
back seat, unaware of the
golden countryside
and moo-cows beneath
the glorious blue sky
where clouds
shaped like Ohio, our ancestral
homeland, skittered by.
What a lovely house you
built where
the Lenni-Lenape once
dwelt. You
would have fed them, I’m
sure, baked
your sparkling butter
cookies and
watched as they chewed
this
unknown food, wondering at
the taste of butter and
peppermint.
I loved sitting at your
big dining room
table with huge windows.
Once you
and your children sat
there. Tom
would have said grace. And
now
your fledglings have
grown. Off to
their own new worlds.
And you await with
patience and grace
your own new world. It
arrives slowly.
Tom holds your hand. Companions
on all sides.
And unseen angels who hold
you in their arms.
You, blessed among the
multitude.
Thank you for accepting me
as your friend.
- Ruth Z. Deming
When the time comes, she and Tom will move into a cottage at Dock Woods in Lansdale, PA.
When the time comes, she and Tom will move into a cottage at Dock Woods in Lansdale, PA.
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