A Gifted Friend

My friend sent me this:

You Love Me Best

When will we be together again?

Will the sun shine with skies of blue?

Wisconsin Clouds

Will you remember me, Will I remember you?

Some days, the clouds roll past my windows

But the home of my childhood shines clear.

The songs I knew in my youth ring true.

Do I still remember me and.... you?

My favorite pet's name and my first car

The miles I traveled in my early years.

The dear souls I've met and places I've seen.

Where is the bathroom.... and you are?

Rice Lake, Wi

The doctors, the nurses the lab tech, the maid.

The last thing I ate was what?.... when?

Right foot, left foot, I try to tell them to 'do'.

Please, tell me again;  I like you, you're who?

The learning to walk again is so new.

Us kids rode bikes where ever we went.

Where are the birds of spring?  The warm summer sun?

I'm tired. I'm cold;  hold me close, let me rest.

Yes, I know you.  You love me the best.

When we are together again,

The sun will shine under skies of blue,

Until then, remember me, while I remember you.

-Cindy DeRoss- 

I am so touched.  My friend and I have reconnected via letters at Christmas and she wrote this poem after reading about Momma.  She's always been a great writer and I'm proud that she has such a wonderful warm attitude, even with some rather large heartaches along the way.

Momma had a fairly normal week.  A normal week for us is pretty crazy these days, but we are grateful.  The weather is warming a bit and Momma is happily reading Easter and Birthday greetings over again today.  She thinks I'm her Momma or her Sister Alice or Sister in Law Lena.  No matter,  she's happy about it.

Hats off to you, Gram, Alice and Lena!  And when we meet again, under skies of blue, you'll remember me, and I'll remember you.

Easter 198x and today

Long ago and far away...

Easter... in Northern Wisconsin, we had a lot of different climate occurrences to deal with - snow, rain and occasionally some warm sunshine.

One Easter weekend, I think I was in high school, I might have been in one of those odd teenager stages... 'Awww, Mom... don't make such a big deal.'  And this cup is what I got.  Ok, so the actual stuff in the cup is from today, but I remember my heart melting when Momma hid a special cup in the house for me.  It was full of M&Ms, a couple of pens, and a note pad.  Miserable and rainy outside but warm and sunny inside.

We've given each other cards through the years and sent packages when we lived far away.  Today happened to be very nice outside.  Today Momma was ok with sitting outside.  I was so sorry that I killed a beautiful hibiscus from last year.  I left the dead plant in my big pot outside, in case it wanted to think again before visiting the dumpster.  About a week ago, it came back;  just a few tiny spring leaves.  So I gave momma a little clipper and had her cut the plant back hard.

Momma had zillions of flowers through the years.  I was so embarrassed as a kid sometimes.  We had geraniums in the house all year.  We had cactus, ferns, philadandrum, burrow's tail, and many of Momma's specialty:  African violets in every color of the rainbow.  I always thanked God we didn't have acres.  I'm sure we would have been growing fields of berries or something and I felt that our garden was large enough, thank you.  I now have african violets I am terrified I will kill.  I have already offed the burrow's tail, philadandrum, most of the cactus and the ferns didn't make it for even a week.  Plants shrink back and try to hide when I visit the greenhouse for possible victims.

What's ironic:  Today, Momma looked at me and said, 'You want me to do what?....  I don't know very much about plants."  I found this humorous.  I had some bulbs in waiting, so I let her dig the holes and we covered the bulbs together.  I have some decorative glass items in the pot.  She started to dig holes for the glass frogs, and the big turtle.  I asked if she was trying to grow more.  Of course, it wouldn't be a complete surprise if she was successful.

The next thing I know, Momma is pulling plants OUT of the small pots.  Um...  Momma, they might die without dirt?  I'm thinking some of the Christmas cactus have bitten the dust.  However, since Momma did it, they have a fighting chance.  My heart melted and I thought 'Awww, don't make such a big deal!'....

Here's a picture from today:

A Short Update

Hi,
We've had so much happen to us in the last few months;  I do promise to get updates out soon!
Some good, some not so great.

Each day I've fallen into bed at night grateful for a few things:
*Momma doesn't know me, but she likes me.
*Momma is sleeping well through the night.
*I'm coming to terms with our future, not liking where this illness goes, but accepting it.

We are safe, for the moment.  And we are together.

And I'm thankful.  I've had a chance to reflect on how very very tired I was before I asked for help about a year ago.  Yes, Theresa has been with us for a full year, caring for Momma day in and day out. Some days have been scary, some happy and joyful and some are lonely.  She's grown a lot and has learned a ton.  If I'd had a daughter, I think she'd be just as great as Theresa is.

Momma's exhaustion is apparent.  We have a few active days, but now it seems like 'active moments' or 'active hours'.  She's still jittery but not like before.  Afterwards, she's extremely weak and needs a lot of sleep... sometimes about 18-20 hours.  The activeness or alzheimer's takes so much more out of her than before.

As our journey continues and is getting more difficult in so many ways, it's also difficult to write about.  I've started at least eight blogs and none of them sound right.  Any of you who are living with the range of dementia illnesses know that the wide range of emotions can be exhilarating and exhausting - sometimes at the same time.

Small successes are to be celebrated, losses mourned.  Lessons learned and I am still in school, even after all this time!

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.

John Steinbeck 

3AM Feeding

Hi Everyone! 

I just want to share a short, cute story and say that there is much more to come. 

Momma has been on the extreme ends of the pendulum.  She's either totally wiped out or in Alzheimer world.  Busy.  Talkative.  Questions.  Into stuff.  Shaky.  Forgets her walker.  Gives me regular heart palpitations.

Momma was a bit active the other night, so I gave two Tylenol PMs.  Now if I were to take this medicine, I'm not sure I'd ever wake up.  However, in Alzheimer world, for Momma, she might get a couple of restless hours of sleep out of it.
At 2:** something in the AM (I just couldn't bring myself to get past the 2 part), Momma got up.  and she was feeling panicked....  we'd had a tornado.  I'm trying register what she is thinking and wishing that my body was in my warm bed....

"Yes, we've had a tornado."  And the whole house has fallen in.  You need to take me to your Dad, he's hurt and it's kind of bad.  I have to help him.  Right now!!  (I wasn't moving fast enough).  Our stuff is all gone.  She looked exhausted and like she was going to cry.

So I pointed out that in her room, the books are still on the shelves.  Momma's answer:  "My room is the very best room in the whole house!"  We walked very slowly around the whole dining/living area.  When we got to the kitchen, Momma said, "Wow, what a bad dream!  Now I'm hungry.  Is there some coffee?".  Oh.  I had thought we'd be going back to bed.  Silly me.

So I made cups of tea and we had some leftover fruit bread.  Momma loves fruitcake; one of our dear friends took the time to send a loaf just for her after Christmas.  She raved about how great this is and at around 3:** ish, she thought maybe she could sleep for a bit.

After all, we have a huge mess to clean up tomorrow.
And the pendulum swung. 

She Loves Me....

Epiphany definition: 

A sudden, intuitive perception of or insight into the reality or essential meaning of something,usually initiated by some simple, homely, or commonplace occurrence or experience.

Every night at sundown, it's hard to say where Momma's mind will go.  Momma asks several times a day and especially at night, "Where's Byron?" or "Where's Arlene?"  I try not to get my feelings hurt or feel jealous of these invisible 'kids' who have captured Momma's love.  After all, she hasn't really SEEN them in 40 years or so!

I tuck Momma in and give her a kiss.  I say, "Momma, I love you; goodnight."  Momma says, "goodnight."  or "do you have to work tomorrow?" or "thanks for everything."  At times Momma says nothing.

I know my Momma is deeply grateful for the help we give her.  I believe with all my heart that she is happier at home than she would be in a nursing home.  She's lived an exemplary life of gratefulness.  We have always been polite to each other.  But sometimes, I want to hear, "I love you" more than anything.  

Those are hard times for me, when the words aren't available for Momma.

After tucking in, Momma usually is in bed for 15 or so minutes.  Then I hear her put her feet in her slippers and shuffle to the door.  She carefully peeks out of her dark room and the shaft of light hits her shock of white hair.  With genuine concern, she says, "Where's Arlene?  Is she in bed somewhere?"  And I answer, "Yep, she's upstairs in her bed.  She's fast asleep; Momma tiptoes back to bed and gently slips between the covers.

Here was my Epiphany:  My friend, Lee Ann was here.  Now Lee Ann is GREAT with Momma and she has a gift for seeing things in a way I cannot right now:  She said, "She really loves you.  It takes her a while to remember what she needs, but when she does remember, she comes out and asks about her Arlene."  

Tears filled my eyes because I knew that it was true.  The communication may have changed;  Momma may not be able to look at me, recognize me and tell me that she loves me. But when she comes out of her room every night to ask about Arlene and where she is sleeping, she is sending a very clear message:  She's worried about that one and loves her very much.

Thanks Momma.  I worry about you and I love you too.

Mutiny

Actual Events around 12/15/12

We've worked hard all week.  SWA has been busy with end of year preparations and with new projects.   The Area Aging group finally helped us with a plumbing job that was bigger than I could handle.  So on Friday night and Saturday, my friend and co-heart Lee Ann and I gutted Mom's bathroom, other than what was repaired this week.

 

In our exhaustion, we contrived the most brilliant plan!  We would celebrate a special Christmas Dinner early and we would enjoy the warm companionship of those closest to us.  We would give Momma and Theresa a new experience;  a Hibachi Grill, where they cook the food on a grill at your table.  They fling knives, make fires and make everyone laugh with their antics.  Deliriously, we thought this was an excellent idea before everyone parted ways and went home for Christmas.  Lee Ann and Theresa are travelling in different Northern directions to their families.  Momma and I are on our own this coming week.

We got everyone ready, anticipating dinner and fun.
"Ok, let's go..."  Almost in comical unision, immediate responses from two directions: 
Where are we going?

What are we doing?

Why can't we just stay home?

My kids aren't home yet?

We weren't anticipating ... the rise of the MUTINY.

Momma:  Put her foot down.  No. No dinner.

Theresa:  Put her foot down.  No. Dominos Pizza.

Momma's story:  Those stinker-kids yelled at me today.  You should have HEARD the names they called me.  I should have whacked them and washed their mouths with soap!  I'm tired after looking at them all day.  I don't want to go anywhere.  I want to stay home.  (to apparently beat the children).  I'm not going.  You can't make me.  No dinner for me, I'm not hungry.  Some other time.

Theresa's story:  I'm wrapping presents and Momma has been busy all day.  I'm tired.  And you'll make the waiters flirt with me and it won't be fun.  And I want pizza.  How about Dominos?

After what seemed like a long time arguing with both of them - it took a full 40 minutes to assemble everyone in the car, still protesting all the way.  Mentally exhausted myself, I compared it to herding cats. 
We got to the restraunt, all of two minutes away and I wondered if this was a good idea.  Momma thought that Byron was lost.  Momma had one of thoese full on, "OMG, He's Lost!" moments tonight.  We had to keep distracting her from looking for a kid that is currently 50, milking cows and not lost.  She was scrutinizing every table.  We didn't make the waiter propose to Theresa or anything.  (but an oh-my-goodness cute boy sat at our table.  T pretended to read a book.)    :)   Momma drank hot tea and look shyly at the guy flinging eggs around.

Theresa asked sweetly if she could drive.  The entire time, Momma was sure we were close to 'home'.  In a frequent and rising crescendo, she gave directions:
"turn left and we'll be at hwy 8"
"now turn right, there's hwy 40"
"no cars coming; go straight"
"we should see the house anytime now"

With all of us telling Theresa to be sure to stop at the corner and look both ways, Momma telling her which direction to turn and all of us shrieking a bit when she bumped a couple of curbs, it was time to try something new:  Parking at Sonic is of course, not quite the same as a wide open, empty parking lot with no other cars in it.  To my relief, the job wasn't great, but not touching on either side.  Never mind that I had exactly enough space to get out of the car without knocking over the drive in menu and T had to kneel on the seat and hang herself half way out of the car to order.

Lee Ann and I were satisfied.  We tortured everyone with a nice dinner. 
For today, The Mutiny is quelled.    :)

 

Merry Christmas!

I got a special Chinese Fortune this week.

"A Four-wheeled adventure will soon bring you happiness"

Oh, the things that came to mind... a trip to the beach, the hill country in the spring, when the bluebonnets visit, a trip with friends to the grand canyon....  yeah, lots of great things came to mind.

A Christmas story:
Christmas eve... Momma had been active all day.  She helped me stick labels on the late Christmas cards and she admired the tree (it'll do, she thinks she should have bought a new one)and then she was ready to go home.  She'd walk if necessary.  It's a long way from TX to WI.

So I made some hot cocoa and we toddled out to the car and took a ride to the Highland Park part of Dallas.  They outdid themselves this year in decorating!

 Oh the Lights!  We drove around the neighborhood (note, we do not live in this area) for an hour and looked at the grand homes that had been decorated professionally.

Some rules of decorating:

*lots of stuff is good*

*more lights are better*

*popular item locally:  wrap the trees in millions of lights*

*large inflatable items or items precariously placed on the roof are impressive*

It's good to know that the Griswold's are alive and well and have obviously promoted to a larger home.  The pics are hard to see; my apologies.

Momma enjoyed the family that put a Santa in Motion on the front porch - so real looking, I looked twice!  A large sign nearby said 'Free Candy from Santa".  I thought that was so sweet.


Difficult to see:  Momma active, telling me which way to turn to get home.  It all looked so different to her.  When we got home, she thought she was tired enough to go to bed.  It turned out that she wasn't actually ready to get to bed until about 530am Christmas Morning.  Overnight, it seemed like Christmas long ago.  Momma saw Aunt Grace and Aunt Alice (me) and her Momma.  Aunt Lena's daughters, Sandra and Delores were here.  They had such a nice visit.  Momma baked cookies.  Momma took a tumble; she didn't get hurt, thank heavens.

Even though my four-wheeled adventure wasn't what I had in mind, In some ways, it's a better adventure than the one I'd hoped for.