Life Support vs Love Support

E- Here we are again....another one of our Dad's high school buddies is battling to remain on earth. He is in Detroit on life support after suffering a massive heart attack on Sun. I received the call this am from one of my Dad's pals in Maryland who wanted me to decide if my Dad should hear this dreaded news about one of his high school besties and groomsmen (possibly best man?) from 56 years ago. 

The discussion of life support was recently brought up by J's son regarding Sweet T. He asked J what will we do when T stops eating and when will we take her to the hospital for 'life support' (aka feeding tube). J told him that we won't be doing that...once Sweet T is no longer eating we will continue to keep her comfortable and establish hospice support for end of life symptom management. 

In my medical and 'daughterly' mind, this means Love Support. We will shift all energies and efforts to extra large doses of love for Sweet  T, her main man G and one another. We will continue to maintain a dignified environment for her passing and God willing the end will not feel as drawn out as the past 8 years have been for Sweet T and our family. She deserves some peaceful rest with her parents and 9 siblings who are waiting for her up there. 

So- to J's son.... Life Support vs Love Support. Both have their place depending on many circumstances. I truly believe Love Support is the compassionate plan of care for your Grandma. I admire your desire to respect life on all levels and I hope you can eventually understand that we are respecting her life. AMDG. (and XO) Aunt E-Bone 


Celebrate Now

J: We attended a beautiful anniversary party last night for our neighbors who were celebrating 40 years of marriage.  Their boys threw them a surprise party and it was a ton of fun.  I had talked to my neighbor about her anniversary several weeks ago.  She was asking me what they should do to celebrate.  I told her that my mom used to say that you should celebrate 40 years because 50 years of marriage is often hard to reach.  

It was good advice for our parents.  They threw a huge 40 year anniversary party for themselves.  The grandkids were all young and they party was a little wild because of that, but it was a wonderful celebration and my parents were in their prime.  By the time 50 rolled around our mom was having trouble keeping track of things.  The guest list was a mess and people who should have been included were left out.  It was the first real sign of what was to come.  Now as we approach their 56th anniversary we look back and see the denouement of their lives  we realize that the Sweet T and GRB that we see today will be a little more diminished tomorrow.  The steady decline in both of them is sinister and sad.

Celebrate today.  Tomorrow is promised to no one. 

Life Goes On


K:  I have not written in a while, but I have watched and listened during my short visits to Cleveland every few months to visit to see my parents and witness their decline.  It’s difficult and always heart wrenching to leave not knowing if this will be the last hug, or “I love you” spoken.

But what I am thinking about today is when this is all finally over and they are in their eternal resting place and at peace, what happens to our family?  Who is the leader?  Who assumes the maternal/paternal roles, or do we all just go our separate ways?  To say our family situation with both our parents having ALZ hasn’t taken a toll on siblings would not be true.  It has.  Living away has proven a challenge in many ways, and not always good.  It’s a huge job taking care of our parents and not shared fairly. But we all acknowledged this going in , however, time is moving slowly and frustration grows quickly at times.

So we are now dealing with a sibling who lives north of Houston and has thankfully avoided the catastrophic flooding of her home, but neither she or her husband has been able to get to work for a while and that creates a financial hardship.  Who does she turn to for help?

My mother in law passed away this year leaving behind her 63 year old, mentally challenged son who has lived with her all his life. Who takes care of him now? Where does he go?

I think the answer is WE take care of our own. Brothers and sisters come together out of respect and love for the parents who raised us and we look after each other whether we “like” them or not. They are blood. We are family.  Unlike the political environment we are living in today, we MUST strive to work together, make decisions and have compassion for those that need it most.

Whatsoever you do to the least of my brother,  that you do unto me.

Let's Find a Cure

J: My frustration level is rising with this damn disease.  I took GRB to a funeral this week of a man who died suddenly.  This man was in his 60s and a well loved teacher and father of six.  His job on this earth appeared to be far from over.  And there sat GRB.  "God - what are you thinking?  GRB is ready to meet his maker. " Is what I wanted to scream

 Last night at the Sunday night dinner I patiently fed Sweet T, having to coax her mouth open like  a recalcitrant child.  And agin I thought "Lord - take her home.  Her life's quality has evaporated".  

Yet they remain.  

So, what can a do with all of my frustration?  I guess I just need to redouble my efforts to help find a cure.  My commitment to donating a portion of each of my real estate sales seems paltry in the face of the daunting challenge of finding a cure.  But it's something.  What else can I do?  I can encourage EVERYONE to donate.  Much like the Six Degrees of Kevin Bacon, I have yet to encounter anyone who hasn't be affected in some way by Alzheimer's Disease.  It's everywhere and getting worse every day.  WE NEED TO FIND A CURE.  You do not want to watch your loved ones waste away.  It's awful.  I'm fed up with it.  Go to  Donate today.  Let's find a cure NOW.  Harrummph

The Human to replace GPS

E- Who'd imagine that we are 'resorting' to human coverage vs the forever updated world of GPS tracking devices. Well, it's happening. After 4 failed attempts with GPS systems (all claiming they were created with dementia patients in mind) we are hiring a second set of hands for 18 hours each week to 'track' our Dad.

Lately his wandering walks outdoors have caused much concern for our caregivers. Our Mom's inability to walk independently leaves the caregiver to seat her comfortably inside and begin driving the neighborhood looking for G when he does not appear to be in my house. Last week he escaped 3 times in the same afternoon and once he was found for the third time he refused to get in the car, but he agreed to 'follow' the car. So our caregiver drove slowly up a steep hill and G slowly followed, huffing and puffing as his congestive heart failure forces him to do. 

We are too smart to let this go on. And yet no one is smart enough to patent a GPS that truly works for dementia patients. So we will continue to rely on the kindness and consistency of humans. So as you see new faces leading G around town, know that they are our 'patented' GPS who will not fail us!

And yes...I am working on the ultimate GPS system in my spare time. It will happen. 

Hail Holy Queen Enthroned Above . . .

J:  Today is the Feast of the Assumption of Mary (a Holy Day of obligation.  Boys- I'm sure there's an evening mass tonite somewhere close to you).  I took GRB to church and the opening song was Hail Holy Queen.  It brought back so many memories.  When we were growing up, we had to say nighttime prayers as a family.  We all knelt before the crucifix at the top of the stairs and said prayers followed by a song.  We took turns choosing the song, and when it was GRB's turn, he always chose Hail Holy Queen.  So of course singing it today made me wistful for times gone by and the GRB of old.  

I was just starting to feel sorry for myself, and the rest of our family, given the plight of the Daises, when Fr. Tim started speaking.  He spoke about Mary accepting the invitation to be the Mother of Jesus.  It couldn't have been easy to say yes.  He spoke about our job as Christians: to say yes to the invitations that Jesus extends to us in our lives.  To accept the challenges he puts before us and live our lives in the best way we can.  

I looked around the church and here is what I saw:  A grandma with her incredibly handicapped grandchild who couldn't have been more than 4 years old;  a mother who just lost her adult son to an overdose; a mentally handicapped man about my age; a couple whose adult son just underwent emergency open heart surgery after he almost died.  Those invitations could not have been easy to accept.  Yet there they were at church, shouldering the burden, living a Christian life as best they could.

My invitation suddenly seems a whole lot easier to bear . . .

Birth Control 101

J:  The local high school here offers parenting classes, likely in an effort to give the students a little feel of the enormous responsibility of having children and perhaps convince them that they aren't quite ready to be parents.  The students have to drag a 10 lb bag of flour around with them for a couple of weeks and make sure that it stays in tact.

I think I have a better idea of how to dissuade kids from becoming parents too soon:  give them overnight Daisy Duty.  My son has pulled a few of overnight shifts recently due to caregiver vacations etc.  He, like most 20 year old men, is a championship sleeper.  He can sleep like nobody's business.  So interrupting his sleep is not advised.  Each time he has returned from the overnight shift he is a mess.  His hair is on end and his eyes are bloodshot "GRB just doesn't sleep" he says.  "There's no reason for him to be up - he's just up" he continues.  "He makes no sense - it's so frustrating."   While I feel for my sleep deprived son, I can't help snickering as I think back 20 short years ago and remember thinking the same about him.

Recently I had a baby shower for my niece who was expecting her first child.  One of the gifts was a book entitled Go the F*** to Sleep.  It is a hysterically funny book about what parents would like to say to their children when they won't sleep at night.  Ironically it was my son who did a dramatic reading of the book for all of the shower guests.  We were falling off our our chairs laughing.  

I bet he would have liked a copy of that book last night.  At least he doesn't have to worry about how to pay for college. . . 

Prayers of Intercession

J: Today is a perfect summer day in the CLE.  So I loaded Sweet T into her wheel chair and wheeled her to church. It has been months since she's been there because getting her in and out of the car is just about impossible.  But it was an easy roll today.  She seemed happy to be there and all of the 11:00 regulars were glad to see her.

The Gospel reading was about the woman petitioning Jesus to rid her daughter of the evil spirit that possessed her.  Her continued petitioning and belief that Jesus would help convinced Jesus of the strength of her faith and the woman's daughter was healed.  Fr. Tim spoke briefly then about the power of prayers of intercession.  Praying for people who need our prayers.  So it got me thinking about what my prayers are for the Daisies.  Do I lack the faith to pray for a cure for this awful disease?  Am I too convinced of the inevitability of their decline to pray to have them restored to health? Should I pray for the researchers and the doctors who are looking for a cure?  Should I pray for my parents to find peace in the situation they are in now? So many questions, so few answers.

When it came time for communion, Fr Tim offered Sweet T the host, and in full, clear voice she said "amen".  I haven't heard her speak that loudly or clearly in a long time.  "Amen" is what she said. " I believe" is what she said.  Despite her terrible confusion, she believes.  I hope she is praying for me.

Hard Wired Habits

J:  Tonite as I was putting GRB to bed, I had to convince him to relinquish the 1/8 of a hamburger that he insisted on bringing home with him from my house.  He was holding it so tightly that he had practically crushed it, but he was determined to keep it in his hot little hand.  He never lets go of a burger, no matter how small  He also never forgets to excuse himself after he sneezes ( a sneeze, by the way, that can be heard around the world.)  Additionally, he insists on holding the door for me, and for all ladies.  These habits of his are hardwired.

Similarly, Sweet T routinely reads the paper when she arrives at the table for breakfast.  Granted, more often than not the paper is upside down (perhaps a new skill?)  but she always has it in front of her as she surveys her breakfast.  She has done this for as long as I can remember.  She is also routinely sweet, smiling at everyone who comes to greet her.  Again, a hard wired habit.

So this got me to thinking.  What are my hard wired habits?  When the kids were little and the chaos of four boys overtook our house I would routinely say "that kind of behavior is for outside or downstairs".  Is that what I'll say should I wind up in my parents' shoes?  I'd be lucky if it was so benign.  More likely unleashing the string of expletives that followed when they didn't go outside or downstairs would be my hard wired habit.  I guess i have a choice.  Learn some new habits or work really hard to avoid dementia.

In the meantime, outside or downstairs with that kind of behavior. . .

Reach Out and Touch Somebody's Hand. . .

J:  . . .and make the world a better place if you can.  The lyrics to that song come back to me each time I'm with my parents.  I am not a scientist, but I would bet that touch is the most rudimentary of our senses. It is likely the first to form and the last to leave us.  It has been well documented that babies who spend the first weeks or months of their lives in isolettes don't thrive because they lack their parents' touch.  

In the same way, I feel that our parents benefit from our touch.  Often these days Sweet T doesn't utter a word.  But when I rub her shoulders she always lets out a soft sigh as her whole body relaxes.  And rubbing her hand elicits her sweet smile.  Even GRB, who can often be grizzly these days, softens when I grab his hand to hold as we walk around the block.  

And the sweetest touch of all is when GRB and Sweet T are seated next to each other.  More often than not, GRB will rest his hand on Sweet T's leg or vice versa.  And it seems to make both of them happy. 

So go ahead, reach out and touch somebody's hand, and make the world a better place!

Alzheimer's Prime Day

J:  My family is abuzz today because it's Amazon Prime Day.  We've been on line trying to land the coveted deals of the day while they last.  Everyone loves a deal.  No one can get enough! But tomorrow it will be over and Amazon will go back to being just Amazon.  If you don't shop today, you'll be sorry.

I feel like Alzheimer's should have such a day.  Visit that AD patient today or be sorry.  In fact, I think all terminal diseases should have such a day.  Visit today, reach out today, send a card today.  Tomorrow it might be all over.  I've talked to so many people who ask how our parents are. The truth is, they are slipping, and rather quickly.  After I report this the questioner will usually say, somewhat shamefacedly, that they really need to drop by to say hi.  You do.  Do it today. They might not be here tomorrow. And if they are, they'll be a little less themselves than they are today.

Hurry!  Time is running out. . . 

Four Wheeling

E- Sweet T has become quite immobile. While in the compound or on the patio she may walk a bit, but if it's a timed event, the wheeled walker with the seat becomes very helpful. She routinely 'ouches' when it is clear that she is being moved cautiously and comfortably and she forgets the 'thanks' toward her driver but offers a shake of the head with a look of disappointment. Today our Dad was pushing Ice T (nick name when she's dishing attitude) and he decided to off road with her and the wheel chair. These oldies but goodies (both the chair and the gal) are not built for off roading but G enjoys zig zagging between homes in our hood. We will probably never understand why he feels the need to do this but Ice T generally turns to her outside voice for a "Jesus, Mary and Joseph" prayer when she's jumping tree roots and dodging bushes in the wheel chair. 

These events mix in some adventure for T and at least she's on the road again. She may have on slippers to save her fragile toes and her conductor may take the road that's less traveled by man, but who cares!! We have put away the stop watches and each walk completed without an Amber Alert is a successful activity that we hash mark in the Parkway Pride column!!

Food, Glorious Food

J:  Food is a huge part of life.  Social occasions usually revolve around food.  And shopping, preparing and talking about food takes up a lot of our lives.  Growing up, our parents had so much to say about food.  Usually it was about the cost of food. Ridiculous! Exorbitant!  Don't waste a morsel!  This grocery run needs to last a week!   These were commonly heard exclamations and proclamations.  

And then the comments about those who ate too much.  "She's casting a big shadow". "People probably hide behind him for shade".  They had no sympathy for the overweight; even when they were their own children  They redefined the word "abstemious"  They ate healthy foods in modest amounts.  They read "Eat To Live", "The Wheat Belly Diet" and countless other self help/diet books, always striving to improve their health and their longevity.

Fast forward to today.  GRB eats like it's his job.  And poor Sweet T can't eat anything without help.  So he's getting bigger by the day, and she has achieved the lean look she coveted all of her life.  The old GRB would be appalled to see himself today while the old Sweet T would be thrilled with her self control.  There is something to be said for having to be fed every bite.

So what's the lesson to be learned?  Life is short, eat dessert first?   Everything in moderation? Diets be damned?  Bon Appetit? 


Happy Father's Day

J:  On the Eve of Father's Day, I'm happy to report that all is well on the Parkway.  GRB's new GPS watch has proven to be rather effective at tracking him and that, plus a little luck, has kept him safe for the past couple of weeks. Sweet T has rallied and is back to her pleasant self.  We are looking forward to celebrating the day tomorrow with most of the boys in attendance.

I'd like to thank everyone who contributed to the special book that we put together for E's husband.  In my book he is truly the unsung hero of the Parkway Project.  He jumped in with both feet a few years ago when they decided to buy the house and add the room for my parents.  He soldiered on when they moved in almost two years ago and he continues to persevere despite the constant barrage of crazy that hits him everyday. I'm sure he's questioned whether he signed up for this when he married E more than 20 years ago.  I'm sure he'd love to come home once- just once- to an empty house.  I'm sure he's bitten his tongue more than once to avoid screaming in frustration at the chaos that is his life.  But honestly you would never know it.  He presents a calm, cool demeanor to everyone who visits and he always seems to be ready to handle whatever comes next.  Need a ramp?  A wheelchair?  A potty chair? A beer run?  B is the man for the job. 

Most of the beautiful letters I received from the Daisies' friends and relatives mentioned that B is living the Ignatian motto of being a Man for Others.  I couldn't agree more.  I'm sure somewhere in heaven St. Ignatius of Loyola is smiling at this faithful disciple.

I hope he knows how much we appreciate what he is doing.  The Daisies won't be with them forever but the memory of his selflessness will never fade.  Thanks B!!

GRB Goes Rogue

J:  The unthinkable has happened:  GRB has turned to a life of crime.  Friday began as any other Friday, unremarkable and rather slow.  The Daisies enjoyed the last Senior Lunch of the season at St. Chris then returned home to rest.  Upon awakening, GRB headed out for his daily sojourn around the 'hood.  The caregiver waited for his return and began to grow alarmed when he was not back in the 7-9 minutes it usually takes him to cruise the street.  She went on the hunt.  

As luck would have it, it was a beautiful day and my husband was in our driveway contemplating the mound of mulch that had just been delivered.  The caregiver consulted with him, inquiring if he had seen which way GRB had gone.  He was not able to provide any guidance, so the caregiver decided to jump in her car to find him.  Just as she was crossing the street, who emerged from the neighbor's house, but GRB himself.  At the same time, a loud alarm began sounding.  The caregiver quickly realized that GRB had set the neighbor's alarm off.  GRB seemed nonplussed by all of the activity and tried to escape the scene of the crime post haste.  Rocky River's finest would have none of that.  They were on the scene in a New York minute and began demanding information about the intruder.  GRB, pleading the Fifth,  would provide none.  

The homeowner, summoned by the police, arrived in short order and assured the police that he did not wish to press charges.  He and GRB shook hands and the caregiver escorted the felon back to his house.

So we are left to wonder: what drove him to the B&E?  Was he hungry and looking for a snack, thirsty and hankering for a Dort? Or perhaps he was looking to drop some St Ignatius gear into the house of an avid St. Ed's fan?  The world may never know . . .

Things That Go Bump in the Night

J:  It's been a rough week for GRB.   A week ago he took a spill while working out with his trainer and needed some stitches to close the wound.  He was a pretty good sport about all of it, and luckily the ER was slow that day so we were in and out rather quickly.  

Then Tuesday night somehow he got out of the house after dark (with or without the caregiver at his side- the details here are a little murky) and managed to fall on his face.  Now he has a HUGE raspberry on his forehead and cheek.  

Then yesterday E determined that last week's wound was infected and we needed to take him back to the ER for additional antibiotics.  Apparently everyone who lives in Westlake needed to go the ER yesterday, so the antibiotic run took six hours!  UGH.  Again, GRB was pretty calm about the delay.  We brought him a burger from a local joint and he was happy to nosh on that while waiting, though he did ask every passing nurse for a beer.  

Two rounds of IV antibiotics and he was ushered (carefully) out the door.  

Another crisis managed.  As I looked at him in the hospital bed, though, with his banged up face, his red, swollen leg and his confused countenance, I couldn't help but wish (for the millionth time) that I could just get a little peak at God's play book so I could understand why this poor guy has to endure so much.

Final Farewell

E- We said goodbye to another wonderful friend of G's this week. He was an Iggy grad,  groomsman in our parent's wedding, and a faithful friend to both of our parents over the years. I informed our Dad of Dick's passing and I was shocked at his response. He was visibly and verbally upset. We set up wedding pictures and more recent pictures which included Dick. G was so sad while digesting the news and pointing out Dick in the pictures. 

This not only brought tears to my eyes but some anxiety regarding T and G's race to the finish. In the past I did not really feel that G would notice if Sweet T disappeared, but now I have a new opinion and an addendum to my daily prayer for my parents. 

Dick joined several other Iggy grads from the class of '57 so we know there is a party going on up there in Heaven! The many tales told following the funeral by so many friends (many high school antics included G) makes me think Dick may petition to invite G up next. As a successful defense attorney and a man of so so many words, Dick may have the ability to sway Him to bump up G on 'the list'. 

Until then...we will press on with our Parkway Project!


He's Got the Whole World in His Hands

J:  . . . and his whole wardrobe on his back.  

There's a lot of crazy that's been sprinkled around the Parkway these days.  It started with Sweet T and her refusal to walk over the weekend.  She just simply couldn't move her legs.  E speculated that it could be advancing arthritis in her hips that is making it painful to move, so she was choosing not to.  A dose or two of Motrin seemed to help, but what really got her moving again was singing.  And the song of choice?  "He's Got the Whole World in HIs Hands".  And since the song can be sung over and over, adding a different name each time it's sung, we have been singing it a lot.  It sort of gets stuck in your head.  And she's back on the road.

On to GRB's crazy.  E wandered in to their room last night, hours after he went to bed, only to find him in his closet donning as much clothing as he could.  When she arrived he was wearing, from the bottom up, his shoes, his underwear, his shirt, Sweet T's shirt, Sweet T's raincoat and his winter coat.  No explanation was offered for the wardrobe choices, and E patiently helped him disrobe and get back to bed.

On a sad note, one of GRB's best friends passed away over the weekend.  Smoke, as my dad referred to him, was a faithful friend who often stopped to visit or took GRB out to coffee.  Smoke was a good man and lived the Gospel.  We are grateful for his help and his friendship.  Safe home, Smoke.

Alphabet Soup

J: GRB has been a frequent visitor to my house lately now that the weather is nicer and he is roaming the 'hood on a regular basis.  He always knocks before he walks in and offers a hearty "Hullo" as he opens the door.  From there, though, things go quickly down hill.  

He addresses me with his hands spread wide and his head cocked to the side, a wry expression on his face.  It sure looks like he has quite a story to tell.  But as soon as he starts to tell his tale, the words get stuck.  He might get the first few words out before the consonants start to roll together and odd sounding syllables get strung together in a pressured fashion.  The result can only be likened to the Campbell's Soup commercial for alphabet soup - the part before the letters in the soup spell a word.  I think he realizes that he isn't communicating effectively, because the syllables start to come more slowly and he eventually drops his hands on the island in defeat.  It's so hard to watch.  Luckily he's pretty easily pacified with an encouraging word about his tale and the offer of a beer.

I'm lucky that he's still mobile enough to make his daily visits.  But as for this disease, I'll take a line from the Oscar Mayer commercial: It's B-O-L-O-G-N-A

Oh When the Saints Go Marching In

J:  I'm a novice piano player and I was playing today and stumbled across this song.  As I played it and thought of the words I couldn't help but think about the caregivers that faithfully take care of Sweet T and GRB everyday.  E and I joke that we will never see them in heaven, as they will be up in the stratosphere, miles above where we'll be (assuming we make it).  But honestly, I am constantly amazed by the wonderful women who show up day after day with such positive attitudes and so much compassion.  They truly are living saints.  

Taking care of dementia patients is thankless.  The caregivers give and give and give and never receive any recompense from their charges.  I could not do what they do.  I am so very grateful to know all of these ladies.

You are all earning your spots in heaven.  If you stop by someday, I'll play you the song . . .