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!!!

Mission Accomplished

E- Last Thursday we took flight to Brighton, MI to attend the wake of G's best man. I was unaware that G was also Tom's best man too so it was doubly important for us to be present. And present we were. That is about G's capacity these days, but he looked good in his khakis and new Keens. 

Our funeral home visit was 30 minutes during which G attempted to shake Tom's hand in the coffin which I had to put a stop to immediately. He did appropriately hug Tom's wife and call her by name which impressed me for sure. He then turned his attention to  large candy jar and filled his pockets. 

The flight home proved to have a few cognitive bumps which presented in the form of anxiety for about 20 minutes. I was wishing I had packed some Dortmunder heat because he had eaten all of his candy and needed a chaser. His many attempts to stand were halted by the ceiling of the plane and his seatbelt. I held his hand and continuously gave him the "thumbs up" sign because talking was not as option over the engine noise. 

Our smooth landing was followed by a delightful drive home. G commented multiple times on our beautiful city and the beautiful setting sun that was closing out our final flight together. G's last time in the friendly skies was quite purposeful. I am glad we did it together and I can close his travel chapter most definitely. 

His next visit to the skies will be a one way trip to heaven. Amen.

Therapy Baby

E- Last night we were lucky enough to have our caregiver and her 7 month old from 6p-10p. It is such a joy to see G's face light up when he lays eyes on Jr. He believes Jr is his son and last night he really went the distance to care for him. He began by gently squeezing his cheeks and commenting on his double chin then he carefully held Jr while seated at the dinner table. All the while he hummed a nameless tune in an undetectable note. Once dinner was served he eagerly attempted to feed Jr large pieces of chicken and papaya which were a bit much for his 2 teeth. (Keep in mind G was NEVER one who liked his dinner hour to be interrupted, EVER!!) We quickly mashed some bananas for Jr and G was ignoring his own belly and feeding Therapy Baby. No one was more excited about Jr's intake more that G. He commented on every single bite although none of his words made much sense, he did it with a huge smile on his face! 

After dinner we took Jr for a walk together and G continued to hum and periodically tried to check on Therapy Baby while he continue to push the jogger which was less than successful but he tried many times to catch a glimpse of him while in motion. We arrived home after an exceptionally long, slow walk (still unable to identify the tune G had been humming) and my son was shooting hoops in the driveway. G let go of the jogger and stepped right up on the court and shot a few and made one. Still humming, he turned around and walked inside. So much for being in charge of Jr!! 

A perfect ending to our Wed. Thanks Mindy and Jr!

And today I will need to let him know we have to head to Detroit for his best man's funeral.

RIP Tom. 

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.