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

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Lunch

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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.

Saints Amongst Us

J:  I might have written about this before, but I can't remember (haha - bad ALZ humor!)  Anyhow, today is All Saints Day in the Catholic Church.  Here on the parkway, everyday is All Saints Day.  And the saints of which I speak are the wonderful women who file in and out of my sister's house as the caretakers of our parents.  There are no words to convey how grateful we are for their constant, kind, patient presence.  The job is not easy.  The word "boredom" was invented for the caregivers of ALZ patients.  Time really does seem to stand still.  But these amazing women do not complain. As my son said in a recent post, God directs the most challenging battles to his toughest soldiers.  These ladies are battle-tested.  Whether it be a wandering GRB who refuses to stay indoors or a recalcitrant Sweet T who won't open her mouth to eat, they handle it all with the aplomb of seasoned vets.  

They say that Alzheimer's is a disease of the caregiver. As the patient gets worse, the disease takes more and more of a toll on the caregiver Our parents are not aware of the challenges they pose, but we, the caregivers, certainly are.  So as we celebrate All Saints Day, I would like to offer a sincere, heartfelt Thank You to those that make the Parkway Project possible!

Halloween ALZ Style - It's a Real Treat!

J:  E informed me that yesterday GRB ate 14 pieces of her Halloween candy.  My inner 10 year old started to panic- what if they ran out of candy??  

I was immediately transported back to Halloween circa 1976.  Sweet T was not nearly as sweet back then.  She ran our house like a military camp and became especially militant when this holiday rolled around.  Halloween was filled with such angst because so many things could go wrong.  First of all, she would insist that we eat dinner before heading out.  And not just a quick easy meal. She'd make a pot roast or something equally slow cooking and hard to chew.  You just couldn't shovel it in.  Inevitably GRB would be late arriving home from work so dinner would be delayed even more.  Then he'd have to change into his "walking through the neighborhood" clothes, which was a painstakingly slow process. 

All the while, precious Trick or Treat time was ticking away.  Without fail, the doorbell would begin ringing while we were still seated at the table and it would be some lucky scamp like Julie Smith who was allowed to eat a can of Dinty Moore stew (out of the can) and head out five minutes before the opening bell.  All of the biggest and best bars were going to her!  

When we finally got outside it felt like we were moving in slow motion - nobody could move fast enough to collect all of the loot that was there for the taking.  The bag would get heavy (and clearly nothing could be eaten until it had been "checked")  But we soldiered on until the closing bell.  Returning home, we would spread out our riches and begin the elaborate process of trading with each other.  Finally, Sergeant Sweet T would announce it was bedtime.  

Then the unthinkable - Sarge would tap in to the bags while we were asleep, taking large portions of each for the poor kids.  Apparently they were immune to the rotting teeth that were on the horizon for us should we consume too much. The horror.

Fast forward to last night - GRB and 14 pieces?  In one day?  His teeth are shot for sure.  And he might go blind as well (or was that from sitting too close to the TV).  Either way, the carrot diet starts tomorrow . . .

Our Personalized Invisible Fence

E-   G continues to be on the watch list as a flight risk from The Parkway. The issue has not been completely resolved with the extra 18 hours of play date help for G Mon-Sat. The creative caregivers will walk, dine and shop with him but we still find ourselves chasing him down the street rather regularly. His afternoon naps seem to be a thing of the past, so 1p-dinner time are his "Alcatraz hours". 

Well, this village is a smart one. We put our heads together and realized that G will not step out of the house without shoes on. So....for one reason or another we get his shoes off of him and promptly hide them. Excuses such as dog poop on the shoes, gum on the shoes, let me wash some grass off of your shoes, etc etc....anything to get the shoes off and tucked away! Although watching him walk in socks is nearly painful because he (and the rest of our family) NEVER had  shoes off in our home growing up...so he makes an awkward face while nearly hobbling around looking for the shoes. Similar to searching for the Easter baskets on Sunday morning, we quickly redirect him with his drink of choice to sip on in his recliner while watching an old black and white movie. Genius!!!!

This is not anything like the detailed studies I reviewed in grad school or anything that's ever been (or going to be) published. But that's ok...because IT WORKS!!! It's a result of raising tons of kids and managing households! All of T and G's caregivers are such dedicated guys and gals! We are so fortunate to have each of them and their continued bright ideas!! 

XOXO

 

 

 

Alzheimer's: Anxiety's Antidote

J:  Anxiety is everywhere today.  Whether it is caused by the recent natural disasters, the tumultuous political climate or the prevalence of social media, people in record numbers are seeking relief from unrelenting anxiety.  I had never heard of Xanax before a few years ago, and now it seems that people are popping them like tic tacs.

I think I might have a permanent solution to the anxiety issue: a small dose of ALZ.  Yesterday my parents were visited by the home health doctor for their check ups and flu shots.  They were both pleasant with the doctor and GRB especially seemed to relish his role as the patient.  He was cool as a cucumber as the doctor administered the shot and reported being in great health.  His exam seemed to confirm that.  BP of 120/64.  He is not anxious about the Russian interference in last year's election, about the Indians' loss in the first round of the playoffs or even that the Browns are 0-7.  Similarly, Sweet T, who weighed in with a BP of 118/68 is not batting an eye today about Christmas being only two months away.  

We feel sorry for people with dementia because they can't remember. Maybe we're looking at it all wrong.  Maybe, along with ALZ, comes "the peace of God, which passeth all understanding" (Philippians 4:7-9).  Maybe, along with this damned disease, they get a little bit of heaven on earth.

I'm not looking for ALZ, but at 2:22 this morning, when I was wide awake worried about a million things, I could have used a little of that peace . . .

Libra Fest continues!

E- It's still Bday month for us!! Today I am 45 years young (pause)...and I feel truly blessed to have my parents with us in our home. I know that after work today I will review with my parents the many Bday celebrations we have all had over our years together and G will nod along and say "yesss..." while Sweet T will smile and gaze at me. Eventually G will be shocked to hear that I am his youngest and he may look to T for confirmation...or he may look to T and ask "where is T"...which also happens often! Regardless of their responses, they are with us today and for that I am grateful! Tuesday night's dinner hour included the Heimlich maneuver for G, so I am happy to report that both Daisies will see their baby girl this evening!

Cheers!!

A Tribute to the Parkway Team

Written by J, one of J's sons:

Throughout the past years, stories have been shared about the experiences of the Daisies and the terrible nature of Alzheimer’s disease. Some of these stories are funny, some are sad, and some are scary. I read the Daisy blog after each post to stay caught up on the life of G and T and the progression of the Parkway Project. I have said for some time that I wanted to contribute to the blog, but did not know what I had to contribute until now.

This past weekend, some of the Parkway team made the trip down to Nashville for the Walk to End Alzheimer’s. This event aims to raise money for Alzheimer’s research and creates awareness for anyone who participates. I was so lucky to be able to participate in this walk with my family and we had an amazing and memorable weekend together. As the Parkway team traveled back home to the Daisies, I found myself thinking about how close we have become as a family since G and T’s diagnosis. Since moving to the Parkway, this team has become so close and we have shared so many amazing memories together. From the Sunday night Daisy dinners, the countless hours spent at each other’s houses, and special events such as the Walk to End Alzheimer’s, this family has never been closer. While I would give anything to see this disease be cured, I would never trade anything for the memories and moments I have shared with my family.

It has been said that God puts his toughest soldiers through the most difficult battles. What has happened to our family should not be wished upon anyone, but how we have banded together for the Daisies should be shared with the world. This blog post is dedicated to everyone in my family that has made an unbelievable effort for the people they love. The past few years have been sad, but I also have never been around a stronger family in my entire life. So, M&D, E&B, D, B, M, R, L, C, and the Daisies, I love you all and thank you for showing me what the word family means.

J    

Rough Waters

J:  This weekend found us on the road again, this time the destination was Nashville.  We went to support my son B who organized a team for the Alzheimer's Walk, much as my son J did a couple of weeks ago in Columbus.  We attended that walk as well. I was very moved by the effort that my sons put forth to raise money from their friends and co-workers.  And touched even more by their willingness to give up a part of their weekend to walk for this cause.  So that was the positive part.

The OVERWHELMINGLY negative part of the weekend was (and continues to be) that the reason for these walks gets bigger every day.  Every 11 seconds someone is diagnosed with Alzheimer's disease.  And everyone diagnosed with the disease will die. With Alzheimers.

 And so what do we do about it?  We get together at locations around the country and walk.  Sure, we carry brightly colored flowers identifying us as caregivers, or those that remain after a loved one has died of the disease.  And these flowers attract attention while we walk.  But the whole time I'm walking I want to scream THIS IS NOT ENOUGH.  This is a charade.  This disease is killing millions of people.  And we have NO CURE and NO HOPE.  And the amount of money dedicated to research in to this disease is ridiculously small compared to the amount devoted to cancer research.  And guess what - people who have cancer don't always die from it.  They have hope - something that is sorely lacking in our community.  Why do I feel like these walks are akin to arranging the deck chairs on the Titanic?  C'mon - where is the money?  Where is the weight behind our movement?  Is it going to take President Trump's wife being diagnosed with the disease for something to change?  This is RIDICULOUS.  

I have read about Seth Rogen's campaign to stimulate funding for research and I'm encouraged that his loud voice is calling for change.  He pulled up a deck chair after his mother in law was diagnosed with early onset at age 55.  Who else is out there who can help us?  Someone is diagnosed every 11 seconds.  The next one to get the awful news could be your mom or dad.  You don't want to take a seat on one of those deck chairs.  Raise your voice and demand more money for research for a cure.

The time is NOW

Secret Shopper

J:  Today is my day for all day Daisy Duty.  I had the privilege of shopping with GRB this afternoon, and - much to my surprise - I found him to be quite the avid shopper!  We started, as we often do, at Heinens.  He is quite familiar with the store so I wasn't surprised when the cart, steered by him, made its way effortlessly to the beer aisle where he loaded up on the Dorts.  Then we proceeded to peruse each and every aisle, with him remarking frequently about how nice the store is.  Once we had loaded up on all the essentials- ice cream, cinnamon rolls, and chips (which he opened in the store and offered to share with fellow shoppers), we checked out and were on our way.

Our next stop was Sephora where he was interested in EVERYTHING.  I think he is considering a new skin care regimen after sampling numerous creams and lotions.  And after each sniff or squirt he would look around the store with wonder and say "this is a NICE place".  We didn't stay long as I don't think the technicians there are checked out on male makeovers, but as we left the store he turned to me and said, in full voice "I am REALLY enjoying this".  

He certainly was never a shopper back in the day, but I think today just proves that a little retail therapy is good for everyone.

I Don't Want to See Any Long Faces

J:  Happy Birthday to Sweet T!  As we celebrate T's birthday today, I thought I would reminisce about one of her favorite sayings.  "I don't want to see any long faces" is what she would say if something was awarded before it was actually earned.  For example, if I received a Christmas gift anytime before Christmas, T would say "Now remember this gift - I don't want to see any long faces on Christmas morning".  (In order to prevent long faces, she would routinely announce that ANYTHING purchased by her for us after September 1 was going "under the tree" - which was infuriating!!)  As the middle child, I was always the one to perceive slights, so she probably had to roll the long faces line out to me more than any of the other kids, but I'm sure we all heard it at some point as we were all dialed in to what wasn't fair.

So as T celebrates her 78th year, I would like to report that she is not pulling any long faces.   She's definitely been dealt some things that don't seem to be fair- from being the oldest of 13 children and having to watch as 7 of her siblings died at or shortly after being born (due to Rh factor incompatibility) to having to move to the projects when her dad was hospitalized (twice) with tuberculosis, she had plenty of reasons to have a long face.  But she persevered through it all.  And still today, as she is lost in her own world of dementia, there is not a long face to be seen.  I wish you, faithful readers, could see how beautiful Sweet T still is.  Her skin is clear and rosy, her hair is thick and lush, and her face is almost always sporting the sweetest smile anyone could want to see.

Happy birthday Mom - thanks for 78 years of smiles! 

Libra Fest!!

E- It's Bday month at our house! Sweet T and G both turn 78 this month! Saturday we will celebrate with T and shower her with gifts and kisses...then repeat it all again 10/16 for G. Let's not forget that 10/16 is also our 2 year anniversary of our blended Bohemian, German, Italian, Croatian and Irish family! Somehow it has flown by, bad days included. 

Bad days are peppered amongst our good days. We have had some stand offs in the bathroom in terms of clothing v less clothing, some neighborhood break ins and most recently some car invasions. Yesterday G had his pockets full of stuff...after a thorough fleecing it was determined that the cigar, cigar cutter, multiple business cards and pens had all been lifted from my husband's car in the garage. 

We hope this doesn't discourage you from stopping by for a Bday visit...just lock your car and leave your purses and valuables behind. Retirement has left G bored and clearly penniless! 

Cheers and GO TRIBE!!!