An Ode to the Eldest

J:  I just dropped K at the airport.  She spent almost a week here, arriving last week when it looked like GRB was heading to meet Sweet T.  She hung out all week at my house or E's house and was able to get a real feel for life on the Parkway.  GRB seems to have turned the corner.  His meds are helping and his breathing isn't sounding quite as awful.  He seems almost peaceful.  I'm going to credit this to K.  

K is a peaceful person.  She is a lot of fun and can light up a room with hilarious stories if she wants to.  But she can also fill a room with peace with just her presence.  I know that she has worked very hard on learning to just be.  Coming from the Type A family that birthed her, this hasn't been easy.  But she has succeeded.  And everyone who comes into contact with her feels this peacefulness.  It's no wonder that she still has her friends from grade school who she met with while she was here.  It's no wonder that she has a bevy of friends in Dallas.  People sense her peace and want to be around her.  I think GRB picked up on this peace this week.  

Thank you, K-Bone (as my boys call her) for your gift of time and your peaceful presence.  The Parkway is a better place because of you!

GRB in Denouement

J: This has been a rough week for GRB.  Pneumonia. Exacerbated CHF.  Fluid retention. Pitting edema in his legs. He's a mess. 

Yet he's still GRB.  His general demeanor is unchanged.  Today he was asking if he could play football.  He doesn't seem distressed.  He doesn't ask about Sweet T.  He isn't interested in hearing about where she is.  He is unaware.  Which is a true blessing.  

We pray for a quick and painless reunion with Sweet T.  Please pray with us . . .

Absence Makes the Heart Grow Fonder

J:  Sweet T and GRB never got to test out this theory, because they were never apart for more than a couple of days.  GRB did not travel for work and Sweet T would never take a trip without her man.  When Sweet T was alive and well and we would tell her that we were taking a Girls' Trip she would be alarmed.  "What if your husband has an idea while you're gone? " She would ask us.  We got a good laugh out of that one!  

But now, 4 weeks after Sweet T headed north it appears that GRB has A LOT of ideas that he is anxious to share with her.  So many ideas, in fact, that his heart is growing fonder, and weaker, at the same time.  He's struggling to breath and keeps reaching for something or someone that isn't there.  It's like his spirit is searching for the other half.  For 56 years they were together.  They've been apart for 4 weeks.  It looks like that is about to change.

Prayers for GRB . . .

What Remains . . .

From a guest columnist, one of Sweet T's dearest and oldest (by that I mean long lasting) friends

MDH: In these cold days after the death of my dear old friend, I
have been thinking about her legacy. In the words of an old
Tina Turner song..."for every life that fades, something beautiful remains."
Every mother/ grandmother's dream is that those
she has loved and nurtured learn from her, and absorb those things she values
most deeply. That they be her "something beautiful" that will remain.
Mary Terese taught her family what was important to her by telling, 
by showing, and finally, at the last, simply by being. In that being, 
diminished as it was, she taught the most. 
She gave her family the chance to practice returning all
the love she had poured into them. They did not let her down.
It also occurs to me that the unsought, but most lovely legacy of her
long, hard journey - is her grandchildren. They are, indeed, the something
beautiful that remains. In particular, the Parkway BOYS
who often faced situations that were challenging, sometimes annoying, 
even embarrassing. Their faithful care, kindness,
good humor, flexibility and patience built them into unique young
adults of compassion and character.
So, in the end, Terese's dream did come true. Her family lived the faith
and loving care that she valued most deeply, especially -
those Grands: her legacy: the Something Beautiful That Remains.
 

Hand Signals from Heaven?

J: GRB has been sleeping a lot lately.  Like 14 hours a day.  The GRB of old would have been aghast by this type of lassitude.  Back in the day when we would attempt to catch a few extra Z's he would march in, pull up the shades, and announce that "this was no flop house - get up".  But no more.  He sleeps a lot. 

The crazy thing is, though, that almost as soon as he falls asleep he starts moving his hands.  Often he mutters things too, but the hands are always moving - reaching for things, smoothing things down, waving - all sorts of hand motions.  So this has lead us to believe that he and Sweet T have developed a new form of communication - a  heaven to earth type thing.  Our guess, now that Sweet T is enjoying heaven in a fully restored state (read: a little bit of Iced T has returned) is that she is getting on GRB about the bad habits she is witnessing from above. 

I can almost hear her saying "GRB - get up out of that chair and get moving.  Put down that beer.  Clean up that room. Tell those kids to quiet down".  I assume he listens for awhile (while he reaches for her hand), tries to let her know that all is well (as he does the smoothing down motion) and finally gets tired of listening to her (the waving motion).  Sweet dreams? Not if Sweet/Iced T has the last word!

The Silver Lining

J:  "How's your dad?"  It's a question that I'm asked almost everyday since Sweet T has died.  The answer is, he's ok.  He doesn't ask about his wife or wonder where she is.   He doesn't seem upset by the giant empty that is their room now that Sweet T and all of her paraphernalia are gone.  No more wheelchair, no more potty chair, no more hospital bed, no more Sweet T.  When I walk in the room it's like a gut punch each and every time. 

But he doesn't seem to notice.  Which I guess is the silver lining of this damned disease.  It is so hard for me to see him all alone in their big room. But it would be even harder if he was grieving, pouring over photo albums and lamenting the old days and times gone by.  I guess it speaks to the power of the disease that it can erase 56 years of memories.  Or maybe it's Sweet T at work, taking care of her man from up above and keeping him at peace until they can be together again. 

It's a silver lining in the middle of a cold winter.  We'll take it.

. . . Putting it My Way, But Nicely . . .

J The King and I was one of our mom's favorite musicals, and one of her favorite songs was Getting To Know You.  If you are not familiar with it, one of the lines is "Getting to know you, Putting it my way, but nicely. . ." I'm pretty sure that is what she's been doing since she got to heaven.  She is making up for lost time by letting God know exactly what needs to be done, but in the nicest possible way.

I do not like this time of year.  The short days and lack of light have always been hard for me. The days when the sky seems to be sitting on the ground and everything is a leaden gray are the worst.  My mom knew this and was always concerned about how I was coping.  But since she has died the sun has peaked out almost everyday.  It's like she's up there telling God "let's get some sun in the CLE each and every day." But saying it in such a nice way that God can't help but comply.  This morning as I was out walking things started out pretty bleak.  But as I hit the half way point of the walk the skies opened and the sun shone brightly.  I doubt my mom even had to remind God.

Thanks mom!  Now, could you talk to God about that house that I need a buyer for . . . 

Shoeless on the Parkway

E- We have continued our efforts to keep G inside with the shoe free 'invisible fence' concept. The temps have dropped here and there has been snow on the ground rather regularly. These climate changes keep him indoors until we are able to let him loose in the community. He has many new freedoms as a single man and the caregivers are assisting him with leaving our home quite regularly now. 

This morning I was working in my home office and I overheard the discussion in the kitchen between a caregiver and G. It went something like this... "G..are those your shoes".. G replied "YYEESSS!!" (in a near scream, knowing now he would be free to roam outdoors if wearing shoes). The caregiver said, "I did not know you owned Doc Marten boots"...to which G replied " I AM A DOCTOR!!!!"

So there you have it..He's single, he's a doctor and he's on the move!! 

I quickly informed my son that he best store his shoes upstairs unless he wants to permanently lose them to the doctor. 

 

Sweet T's Eulogy

J:  Thank you to everyone who came to celebrate with us yesterday.  The church was overflowing with friends and family.  It was a beautiful tribute to a beautiful woman.

Here is the text of the eulogy that E and I gave:

Thank you for coming here today to celebrate our mom’s life.  It truly is a celebration, because, while we are sad that our mom isn’t with us anymore, we know that she is in heaven and back to being the Mary Terese Kahl Blaha that she once was.

Many of you have followed her life over the past couple of years through the blog that we have been writing.  Through the blog we have shared our parents’ journey through dementia.  But prior to that, our mom had quite a life. We’d like to share a little bit about who she was.

I think four words can sum up who Mary Terese was.  Wife.  Mother.  Faithful German.

Wife.  Our mom loved being the wife of George.  They were married right after college and she took on the role of Mrs. George R.  Blaha like it was her job.  She quickly learned to cook his favorite meals.  He didn’t have a very adventurous palette, preferring meat and potatoes, or potatoes and meat, but she never complained about the monotony of staring at pack after pack of ground meat. 

She ironed his shirts. And his pants.  And his hankies.  She darned his socks (who darns socks?) She learned to play tennis and golf.  When there was an article in the PD about someone who had been promoted to a new position, she’d clip the article out and give it to my dad as a lead.  When she sent letters to school with us explaining our absence, she would sign them Mrs. Geo. R Blaha. 

She took great pride in her role as the woman behind her successful man.  She carried herself regally and enjoyed being mistaken for Nancy Reagan.  Her abstemious nature and rigid self discipline were the envy of many. Though she did always pour that one glass of wine that she tucked behind the can opener after she tied on her apron.  This probably helped her cope with the stress of dealing with another pack of ground meat.

She exercised everyday and we have her to thank for passing on the importance always striving to look our best.  Mrs. George R Blaha always shone.

Mother.  Our parents were married in November and our sister Karen was born the following October.  They wasted no time.  But in truth, our mom had been a mother for a long time before that.  The oldest of the Kahl family, our mom was her mother’s right hand man right from the start.  Our grandma gave birth to 13 children, but 7 of them died shortly after birth because of  RH incompatibility.  So our mom helped her mom bury 7 children.  Our grandpa had tuberculosis and twice had to be hospitalized for months at a time.   Our mom worked side by side with her mom to keep the show on the road. 

So when she finally had a family of her own, she knew just what to do.  We were definitely raised with the “stick” not the “carrot” mentality.  It was her way or the highway.  There were rules, and schedules, and lists of chores.  I can vividly remember riding my bike home from St. Chris for lunch and finding the note at my place at the table saying “No lunch until that bed is made”

Having grown up poor, she took frugality to a whole new level.  Nothing was ever wasted and there was no need for doubles of anything.  If we wanted an extra pair of jeans or a new pair of shoes (that didn’t come from Wrights Shoes where we had to buy all of our shoes because he was a client of our dad!)  She would suggest that we go “splitsies” meaning that she’d pay half if we’d pay half.  We struggled hard to be cool. 

She transitioned quickly from being a busy mom to being a busy grandma.  She had 15 grandchildren in 10 years.  And 13 of them were boys.  She watched a lot of Little League games.  By being a good grandma she taught all of us how to be good moms.

Faithful  Our mom had a strong, simple faith.  She was a rule follower and that made her a good Catholic.  She was not overly pious or incredibly devout.  She was more of a Martha than a Mary.  Her faith was faith in action.  Over the past few months as we have visited with her friends they all reported how Terese was the first to show up with baked goods when there was a life event.  A sickness?  A death? Our mom was on it.  I can’t tell you how many times we’d walk in the door to the wonderful smell of something freshly baked.  And as we’d head to the drawer for a knife to cut into the delight, she’d stop us saying “ that’s not staying.  So and so’s aunt’s mother’s uncle’s cousin just passed so it’s headed over there.”  No matter how remotely you were related to the deceased, if they died, you could expect something baked from Terese.  She firmly believed that any sorrow could be ameliorated by some date and nut bread.  Over the past few years, as her health changed, her faith was unshaken.  One of her favorite prayers was “All things are passing.  God never changes”.  She lived that faith til the end.

German.  Our mom was strong willed.  She was stubborn.  She did not forget.  She did not have a bad temper, but if you did something to displease her, you knew about it.  For a long time.   She always felt that her way was the best way, and our way was not.  Some of her favorite phrases were “ Absolutely, positively not.  Period Amen End of discussion.  She did not leave a lot of room for negotiation.  She would remind us that she was our mother, not our friend.  She kept meticulous notes if we had to borrow money from her – or if we were short on our end of the splitsies .  She had a running tally of money owed that she kept posted in the juice glass cupboard.  Loan sharks could’ve learned a thing or two from her.  And she could sniff out BS.  If you told her a story that she wasn’t buying, she would roll out her trademark HMMMM which meant that she knew that you were likely lying and would soon be in trouble.  She ran a tight ship

Wife.  Mother.  Faithful.  German.  I have laughed and cried while writing this thinking about who our mom was before Alzheimer’s Disease took her from us.  I have learned so much from her.  And I strive to be the faith-filled wife and mother that she was.  As the disease process advanced, our mom lost her strong, German edge.  She mellowed.  We nicknamed her Sweet T because she was always sweet.  She died as she lived: regally, faithfully and sweet.  I love you Sweet T!

Safe Home, Sweet T

J:  Heaven gained an angel today at 8:58 when our beautiful, sweet mother took her last breath.  E and I were with her and her passing was peaceful.  We brought GRB in to see her right at the end, and he seemed to know that she was leaving.  He kept mumbling softly "you're a good woman".  And that's exactly what she was.  A good, faith-filled, faithful woman.  A wonderful wife, mother, grandmother and friend.  She will be deeply missed.  But we feel a huge sense of relief knowing that she is no longer suffering.  Her beautiful mind has been restored and she is residing in heaven with her parents and all 9 of her deceased siblings.  She's probably giving orders.

We already miss you Sweet T.  Safe home.

Notre Dame, Our Mother

J:  It was 35 years ago today that I received my acceptance letter to be a part of the 1988 class of the University of Notre Dame.  I will never forget seeing my mom walking up the street waving an envelope over her head.  It was the coveted "fat envelope" that meant that I was in.  We stood and hugged on the corner of E. Shoreland and Wooster and I'm sure people thought we had won the lottery because of the way we were celebrating. 

I was recounting this memory this morning as I held Sweet T's hand and looked into her beautiful eyes.  She was such a huge support for me and the number one cheerleader of my fan club.  She encouraged me to reach for the stars.  She knew I could do things that I wasn't sure I could do. 

And now she is so diminished.  Her eyes are cloudy and her gaze is blank.  Her body is breaking down and her heart is slowing down.  It is time for her to die.

Notre Dame, Our Mother, take her home to be with you.

Love in Abundance

J:  Tonite was magical.  E asked for Christmas carolers, and they showed in droves.  So many beautiful people arrived with song sheets in hand to sing carols for our parents.  Sweet T, newly ensconced in her hospital bed, was all smiles as they serenaded her.  From Jr at 10 months to seniors in high school - so many wonderful young men and women came and lifted their voices in song for the Daisies.  I am sure everyone in heaven heard it.  I'm certain heaven has quite a few choirs, but tonite's group, in the Daisies room, would be tough to beat. 

Thanks for the outpouring of love and support.  It truly takes a village.

The Coat Off My Back

J: Things are getting a little hairy on the Parkway.  Sweet T is sliding quickly and we all seem to be focused on her.  As a result, GRB has been getting little attention.  Last night, two people inadvertently administered his night time meds, so he was double dosed.  This caused a little extra crazy to ensue.  Somehow, despite the amount of medication he had on board, he managed to get up in the middle of the night and make his way to the mudroom where he selected his grandson C's coat and decided to wear it back to bed.  C is extremely good natured and helpful, but he has his limits.  When he heard that the coat was on GRB's back, he was not happy.  He promptly went in and divested him of the coat, only to find that it picked up the essence of GRB overnight.  Again, he was not happy.  Poor C headed out the door without his coat.  He gives a lot, but not the coat off his back . . .

Turkey Trot

J:  Happy Thanksgiving!  This is my favorite holiday, and, thanks to waking up when the boys came home at 2:38 this morning, I've been able to enjoy just about every minute of it. 

I'm sure as I'm typing that people all over the country are lacing up their shoes and heading to a Turkey Trot to start the day.  The turkeys have been trotting for a while here on the Parkway.  We have a pack of 7 wild birds that roams the parkway on a daily basis, stopping traffic and causing everyone to pull out their phones to document the strange group.  So I guess I've been thinking about Thanksgiving, and trotting, for a while now.

So, on this day of thanksgiving, I'd like to give thanks to all of those who have trotted in and out of our life here on the Parkway over the past year. 

First of all, I am thankful for my family; my wonderful husband and boys who walk with me through everyday.  Your constant, loving presence keeps me moving forward. 

Next, I'm thankful for my sister and her family who keep that crazy show across the street on the road.  Truly, they walk on water.

I'm thankful for my parents, who taught me to walk.  

I'm thankful for the caregivers, who walk in everyday with smiles, and kindness and compassion.

I'm thankful for my brother and sisters who are supporting the Parkway in every way they can.  They might not walk the Parkway very often, but their love and prayers support us.

I'm thankful for our parents' relatives and friends who walk in for a visit and break up the day for our parents and the caregivers.

I'm thankful for the legions of friends and neighbors who ask about our parents and let us know they are praying for them.  You make our steps lighter

I'm thankful for the doctors and philanthropists working to find a cure for Alzheimer's disease, so that soon no one will have to walk this walk.

Webster's Dictionary has many different definitions of the word "walk"  One is "to move along by foot, advance by steps".  And another is "to pursue a course of action or a way of life". Here on the Parkway, we are doing both.  Our course of action is not always clear, but we keep moving forward, step by step.  Day by day, we "walk by faith when we cannot see" (2 Corinthians 5:7)

Thank you to all who are on the journey with us.  

A Day in the Life . . .

J:  I just spent the morning with the Daisies getting their day started.  Here's what today, and really everyday, looks like:

Shower, dress breakfast . .................................................................................................................................................................................

.................................................................................................................................................................................

................................................................................................................................................................................

Lunch

...............................................................................................................................................................................

................................................................................................................................................................................

.....................................................................................................................................................................................

Dinner, bed.

The vast emptiness in their lives overwhelms me.

The Hope Lottery

J:  Finally!  We are winners!  We have hope!  Thanks to Bill Gates and his $50 Million donation to fight Alzheimer's disease I finally feel like we have a reason to think that a cure might not be that far off.  In establishing the Dementia Discovery Fund, Gates is putting some real weight behind the effort to find a cure.  This fund will be used to study alternative paths to a cure, not the amyloid and tau pathways that most of the researchers are following.  Hurray!!  It can't come fast enough.  Gates' experience with other diseases like HIV has taught him that a multi-faceted approach to overwhelming problems like incurable diseases is usually the best approach.  This type of approach is laborious and expensive.  It will take all of his 50 million and probably millions more.  But it's a huge and promising start.  I feel such a sense of hope.  A light just appeared at the end of the extremely dark ALZ tunnel.

Thank you, Bill Gates, for giving our family, and thousands like us, hope.

Alzheimer's Disease: The Fountain of Youth?

J:  Today E and I had morning duty with the Daisies.  This involves helping both of them with all activities of daily living   Taking showers, getting dressed, brushing teeth, eating breakfast - they need help with it all.  it's pretty labor intensive and while we were about half way through getting Sweet T dressed I couldn't help but think that it reminded me a lot of when my boys were young and I'd be in a full sweat as I aided them through all of their ADL's .  As babies, the boys were clueless about the routines of the day.  As they got older though, they would be compliant as we worked through their daily ablutions but I could tell they were anxious;  they were ready to get the day started.  They had vague ideas about what would be coming next - a trip to the park, a ride in the car, a nice meal, a nap.   

I found myself wondering - what - if anything, are the Daisies anticipating for the day?  Their demeanor was calm, they weren't anxious at all about the day ahead.  Did they wonder if there was something planned for the day?  Were they looking forward to anything?  Or, like Brad Pitt in Benjamin Button, were they aging in reverse?  It sure seems that way. After breakfast (that we now have to feed Sweet T using a baby spoon)  she did not make a lunge for the door the way the boys used to.  GRB sat patiently at the island.  He didn't make a break for the Parkway.  Not discontented at all.  Returning to the baby stage.  Heartbreaking.

Sweet T and her recipes

K:   Sweet T loved to bake and the holiday's were her time to shine in the kitchen.  She would make the same cookies every year and put them in tin containers lined with wax paper and hide them in the closet so they would be "out of sight, out of mind".  It was always a thrill to be able to take out all the tins after dinner and dig in to our holiday favorites.  Each one of us had our favorite confectionary and we usually make them for our kids' every holiday now too.  Mom hand wrote a lot of the recipes on index cards and seeing her handwriting warms my heart and makes me miss her this holiday.  

Today I made the Cranberry Nut Bread which she loved and so did I!  It wasn't always a big hit with the others' but Sweet T and I always enjoyed it and consequently I make it every year as a happy memory of her.  I wish I could call her and tell her I made it today.  I wish I could send her a loaf and face time over the phone.   I wish she was still baking her favorite cookies this holiday.

I truly wish for a cure for Alzheimers.  

Enjoy your holiday traditions with your loved ones this year. And if you have a minute, jot down a recipe and send it to someone you love so they always have you  and your handwriting in their "favorites"!  

 

 

 

 

Home Medical Visits for the Elderly

E- Both T and G receive medical visits in our home. The team is composed of physicians and nurse practitioners for both of our parents.  T also receives palliative care visits from another team of healthcare providers. Both groups communicate closely so the visits are alway thorough and clear plans of care are relayed to us following each evaluation. 

The last palliative care visit included the physician spelling out for us the 'turning point' from palliative care to hospice care for T who is slowly declining each day. He said once T can no longer hold her head up and she stops smiling, then we transition her to hospice care. These 'markers' are so important to know and recognize because we all want a peaceful ending and hospice will positively provide that for us.

Presently T is 100% care. She does not stand on her own at all, we transfer her from the bed to the chair. She is showered daily in a shower chair and then dressed.  She may follow you with her eyes depending on the day, but she uses few words which generally DO make some sense when she says them. She requires a caregiver for all meals because she no longer feeds herself. Periodically she clamps her mouth shut and refuses to open it. I have a solution which works for now...but may not continue to work in the future. 

So...how close are we to a smile free face and inability to hold her head up? Who knows...but I do know she can still wink because we were winking at one another over dinner on Sunday night. She is still smiling, especially when kids are around. Last night I was playing with her and Therapy Baby (Jr.) and she was grinning ear to ear. I was so happy to see that familiar smile! She didn't have any words for Jr. even when he grabbed her glasses off of her face. She just kept smiling!

So we press on along the palliative path for now! Meanwhile G is still shoeless when necessary and on the run when accompanied by a caregiver.

They're here but they're gone

G:  The weekend is often the time I get to see my folks. I was pleased yesterday when I arrived that mom was awake in her chair, where she spends the majority of the day watching old black and white movies, covered in an afghan. I told her how pretty she looked and how nice her hair was and apologized once again for giving her so many grey hairs, which as I scratched her head usually elicits a smile.

I loaded dad into my car for a drive to the old neighborhood past Saint Pat's church and looping around to Kamm's corners for a stop at PJ Mcintyres to watch a little football. The man who knew the Kamm's Corner region was gone that day, the man who knew football was also gone that day. The man that knew my name and my family members names was gone that day. Alzheimer’s /dementia had robbed us of all of that. Alzheimer’s /dementia takes away the man/woman and leaves the shell. Such a tough way to lose a loved one. They are still here but they aren’t.