Tripped up but in good hands

E- Our Dad intermittently becomes fixated on the second floor of our house. This is usually after opening and closing the front door 36 times then he will notice or hear something upstairs. He will begin with a chorus of "hullo"..."hullo"... and if he does not hear a reply he will start up the stairs. His heavy feet and slow gait allow someone the opportunity to turn things around for him and/or with him arm in arm if necessary. Steps are not part of his daily routine so we usually assist a bit especially on the way down a flight of steps. 

Yesterday he was solo in the foyer while the caregiver was managing the mulch delivery in driveway. G climbed half of the flight of stairs then stumbled and fell back down. My son (R)/nursing student heard the commotion and ran to the steps to find G still standing but holding the back of his head. My eager nursing student quickly evaluated the scene and called me with a calm, detailed report. It appeared that G hit his head against the front doors which prevented him from landing on the floor. I reviewed his meds with R and asked what was pertinent to consider with aspirin use and head injuries and he answered correctly.  Aspirin is a blood thinner and when a head injury occurs while taking any blood thinner (Coumadin, lovenox etc) it can cause a brain bleed. We then reviewed neurologic changes to observe for and any complaints of headache or increased sleepiness. 

I updated J too and she checked him out and replied to me that all was well....Dad was drinking Dort and watching golf. We dodged another bullet so it seems...Cheers!!


Beer Crawl

E- That's right...not a bear crawl but a beer crawl. G has taken to the streets with open bevies with the warm temps. Sometimes he is still dressed in his warmest winter coat while strolling with a cold one. His winter gloves have finally been hidden away to avoid the gloved hand beer drinking which was commonly seen earlier this year. And a 'crawl' is about the exact pace he's moving with new aches and pains daily! His back and knee are 'giving him hell'....but he continues with his trainer 2 days per week along with Sweet T. 

Lunch dates on the Pkwy are a perfect way to visit. Our patio is set up for summer time dining and we have plenty of lunch fixings and beer! So stop by and check out the new landscaping and T&G!! This Fri 4/28 is the St Chris Social Club luncheon. We will meet at 11:30ish in Mary's Room for lunch and laughs. All are welcome! 

City Surveyor

E- Our Dad is on the loose. Not only am I tossing up a flare to alert our friends and neighbors of his nonstop wandering, but also to let you all know he's frequenting back yards and side yards too. Yes, the GPS is working well so we are able to complete the rescue now that Sweet T has the wheelchair to allow all to give chase. Once discovered between two houses attempting entry through a garage service door, he is immediately taken with the fact that T is in a wheelchair. He quickly darts toward her to ask what has happened to cause her to be ..."like this",  which is about the amount he can verbalize with the shortness of breath caused by miles of off roading through yards. Each caregiver is quick to take advantage of the distraction and suggest a short walk back home to get a beer, regardless of the hour. Periodically G's congestive heart failure trips up this process and he is so winded and confused that we need to call in back up. A quick call to my boys and a car arrives in minutes to pick him up and return him safely to the Parkway Manor. 

Happy Spring! And watch for G in your garage!

Easter Joy

J:  It was a sun-soaked Easter on the Parkway yesterday.  The cast of characters was wide and deep.  We had a new born baby, a delightful 83 year old client turned friend, an assortment of mildly hungover young men, a smattering of lovely young ladies, a darling six year old girl and of course the Daisies .  We kicked off the day with a rousing egg hunt complete with two $50 eggs.  There were some elbows thrown and some accusations of cheating all around as everyone vied for the money eggs.  At the end of the hunt everyone was happily counting their money, scratching their lottery tickets and waiting to eat.  And eat we did.  All sorts of wonderful food prepared by many and enjoyed by all.  After dinner the newborn was laid on the table like the best possible dessert and we all enjoyed watching him sleep.  

The boys took turns racing Sweet T's wheel chair around the yard, testing out its aerodynamic features. GRB tore through the Easter baskets looking for the gooiest eggs.  Nashville Bill played and sang for us, preparing for his first open mic night this week.  People came and went, the sun continued to shine, everyone got hungry and ate again.  The Indians lost. It didn't matter.  It was a gloriously messy fun day.  Hallelujah!

Maintain your role to keep the show rolling

E- My high school friend is in town for her Mom's funeral this wkend. She's taken time off from her FT job and has traveled many hours by car with her husband and three young kids to bury her 72 year old Mother. My girlfriend is the youngest of 3 kids and shoulders the majority of the responsibility for the family when it comes to ....everything. She has a huge role from afar and now it's all right in front of her and she has limited support besides her husband. Unfortunately her Dad is also in the hospital and will not be able to attend the funeral. This stress is also weighing on her and her sisters.

I've been keeping in touch with her daily to offer assistance wherever she needs it and if nothing else to be available to listen.  This morning she was working to meet deadlines for her job along with planning and completing funeral arrangements and contacting Dr's regarding her Dad's failing condition in the hospital.

Soon she will pack up the car and drive away again to return to her regularly scheduled life up north. I am not sure how she will do it, but she will because that's what we all do. We get up each day, assess the situation and press on until the end of the day. Evening reflection generally allows us to pat ourselves on the back and take a deep breath knowing that we completed another day as the Captain of the family.

This wkend will be a family filled time for our gang and I hope it brings lots of laughs and great memories. I truly treasure these times and I hope T and G remain stable for one more holiday! Let's Roll!!

Sweet T's Curtain Call

J: We thought we lost her on Sunday night.  We were all having dinner at my house - E, her boys, my husband, my son along with Sweet T and GRB.  We were eating at the island, watching TV to see if Sergio could hang on and win the Masters.  I was helping Sweet T eat her dinner, but I was focused on the golf.  All of the sudden E shrieked- "J- mom's having a seizure"  I turned to see her arched back in her chair, her hands limp and her eyes empty.  E quickly established that there was no pulse.  One of the boys dialed 911 as I rubbed her legs and encouraged her to come back to us.  Her eyes were half open but they were seeing nothing.  I've never seen someone die, but I thought I was seeing it then.  It seemed like she was gone for a long time, but it was probably only a minute or so.  By the time the EMS arrived she was alert and breathing again.  

E thought she had a stroke; her extremely low blood pressure seemed to confirm that, yet there were no other signs of a stroke.  Maybe a seizure, EMS thought, or perhaps she was dehydrated. Because she is a comfort care/DNR we did not choose to transport her to the hospital.  Instead we took her home, cleaned her up and put her to bed.  It was a nice night, and the windows were open a bit.  As I kissed her good night I told her that the windows were open to allow the Holy Spirit in, and if the Holy Spirit appeared it was ok for her to travel to the Lord with him (or her). I told her I loved her and, with tears in my eyes, I said good bye.  I really didn't think I'd see her alive again.

But yesterday morning she awoke with a smile on her dear, sweet face.  Of course she had no recollection of the previous night's events.  Her blood pressure was still low, but she didn't seem any worse for the wear.  We all spent a little extra time loving and hugging on Sweet T yesterday. Not everyone gets a curtain call.  

And as an aside, and equally troubling, GRB did not bat an eye over all of the Sunday night commotion. Though he was seated right next to her, he was completely unaware of  and unconcerned about all that was going on with his bride of 55 years.  

Expose the Toes

E- My recent head to toe assessment of Sweet T revealed some crazy long toenails! Not only were they overgrown but also growing in a strange direction, leaning toward the great toe (big toe). It didn't;t register at first that the cause was the shuffling gait pushing her toes into the top of her shoes. It took a 1.5 hour long painful pedicure for me to realize what had occurred!! Sweet T's toenails were all making constant contact with her shoes, thus reforming the growth of the nail. Moreover (and gross to discuss) was the horrible ingrown toenail!! Ingrown toenails (if overlooked) will become a surgical repair and are REALLY painful!

Sweet T has lost most pain receptors....until the pedicure. It was awful...I just kept apologizing and promising I would not let the toenail situation occur again. (BTW she had just been there 6 weeks earlier, so remain mindful of overall foot health) ... Monitor for new/unusual areas of redness or purple areas on the foot. Check for any open skin, especially if your loved one has diabetes. Sores on the foot can lead to infection and possible amputation if not properly managed. Individuals with diabetes should absolutely see a podiatrist regularly (every 6 weeks) for management. These visits are covered by Medicare with a diagnosis of diabetes. 

Take care of you loved one's tootsies...they are not able to so we must do it for them! Add it to the list!

Sweet T's Law of Motion

J:  Newton's Law of Motion states that objects at rest tend to stay at rest while objects in motion tend to stay in motion.  Sweet T's law tweaks this just a bit: things at rest want to stay at rest and get EXTREMELY aggravated if put in motion.  She just doesn't want to move anymore.  We have tried all sots of tactics to encourage her to move, but so far nothing seems to be working.  When we announce that it's time to go somewhere she shakes her head just a bit, and, with that cute little smile on her face, politely declines to go.  

So then we start the process of heaving her out of the chair.  She immediately begins to claim that she is "being ripped" (from limb to limb, one has to assume based on her level of complaining).  It doesn't get any better once she's out of the chair.  She attempts to arrest forward motion by pulling back as hard as she can.  At this point she looks like a water skier: arms locked, knees bent, all of her weight in her butt.  The Geauga Lake Ski Team could have used her talents.  Even when we try to turn the walk into a dance by humming her favorite tunes, she doesn't comply. Her movement is glacially slow.  And when we finally reach the destination and she is again firmly ensconced in her seat, she gives it a loud "Phew!" as if she's just broken the record in the mile run.  

The upside of all of this immobility is that she really has perfected that Mannequin Challenge that E wrote about the other day . . .

Shoe Showdown

E- Our Dad only wears one pair of shoes. A less than attractive brown shade Keen slip on with the elastic pull laces to tighten and release. Each day begins with many adjustments to get that perfect tension for his busy day of Amber Alerts and chaperoned walks in the hood. The shoes are a focus...all day. Well I am about to use the shoes for security this week. The new GPS is going to adhere (in a creative fashion) to his shoe because they are the only wardrobe items that do not see the wash. So somehow I will velcro, pin or tape this gadget 'step counter' as we will call it, to his shoe. 

Most nights the shoes remain the center of controversy because he puts them on each time he wakes up during the night. So I will need an extremely secure application to maintain the GPS on the shoe (I am sure that will be tonight's 3 am plotting while I am awake) . So after he completes  his multiple trips to the 1/2 bath near the kitchen (bypassing the beautiful full bath in his bedroom) the arguing begins regarding removing the shoes before climbing back into bed. Last night I began with the 'American ' theme we previously used for our anti recliner sleeping campaign which seemed to fall on deaf/drugged ears. I also tried yanking the shoes off myself with my own frustrated strength but he was using his too and I gave in.

So, once that tracking device is in place we can watch his every footsie move with Sweet T while they're in bed together. Not even sure of the rating on this post....I better end it...

Stay tuned for the arrival of the shoe tracker!!

Mannequin Challenge

E- The parkway has a new record to break when it comes to staying still. We've mentioned in previous posts that time seems to stand still around here, but now Sweet T does too! Lately wherever you leave her (standing. sitting, laying down) you can put money on the fact that you will find her in that same pose upon your return. She just gets stuck!! She doesn't seem to mind (per her usual happy disposition) that she's gone nowhere for up to 30 minutes! Once it's brought to her attention she may chuckle or if she's feeling spunky she'll reply "so what!" 

Recently we've had a newborn baby boy visit our home. Both of our parents were so cute interacting with him. Our Dad sang to him and commented on every tiny muscle group in his little body. He announced what a strong young man he was and he will probably play football. Our Mom was in FULL motion. She jumped up (on her own) each time he cried and she too held him like such a natural Grandma. J and I were far more nervous than the relaxed Mom regarding any slip ups with our parent's huge responsibility in their arms.

They did a great job and the day (for once) seemed to fly by! Sweet T still tunes into the business of caring for a newborn and hung up her mannequin challenge talents for the day. And oddly enough they recall the visits with the baby! Needless to say we are all looking forward to seeing TJ again on Sunday! 


Puttin' on the Ritz

J:  E and I managed to escape the cold of Cleveland for a few days along with some girl friends.  We headed down to Naples and enjoyed the good life, hanging at the Ritz and seeing how the other half lives.   Girls' trips are always fun, and this one did not disappoint.  And they are almost always a herculean effort to pull off, which this one was too.  In total, we left 18 children behind. And of course we left Sweet T and GRB.  One of our girl friends buried her mother in law just three days before we left.   Another friend was lucky enough to have her parents visit us in Florida- a true miracle as less than a year ago she thought her mother was on her way to meet her maker.  And the final gal on this trip left her dad in the care of her siblings while she traveled.  So all of that, on top of the 18 kids - how did we do it?

We did it because it keeps us sane.  Our friendships have endured over the years because they are our bedrock.  Through good times and bad, we can call each other and with just a few words we can convey exactly what is going on.  Girls get it - we know what it is like to balance kids, and parents, and work, and husbands.  It's a true art.  We aren't looking for sympathy or solutions - just someone to listen to us, (and maybe have a glass of wine with us!)  

We met a lovely lady while floating in the pool.  She was 20 years our senior and she, too, had taken care of her mother who had AD for over 10 years.  Her advice to us was "don't lose yourselves through the process."  She impressed on us the need to keep our friends, our hobbies our outside interests, as much as possible.  Because someday our caretaking will end. Someday we won't worry about Sweet T and GRB anymore.  Someday we won't worry if the kids survived another night of partying.  I'm sure we will find new things to worry about, but if we work to keep our friends, we will still have them to call to share our worries (and that glass of wine).

So thanks, ladies for making the time for our wonderful trip.  Life at the Ritz is rough, but someone's got to do it.  Until next year . . .

Going Make-Up Free

J:  I was at Sephora the other day replenishing some much needed lip color and I found myself looking around in amazement at the tremendous variety of makeup that is available.  Dozens of labels, and each label with their own line of products, everything from perfume to hair products to lip liner - if it's not at Sephora, it's not for sale.  And I started thinking about the importance that makeup plays in my life - how naked I feel without it - how I've dodged people at the grocery when I'm running in after a workout and don't want to see anyone -  and how much more secure I feel when I feel that my makeup looks good.  

The next day I was reading something about AD and how it strips us bare of all of our  masks. AD takes away the ability to hide behind social norms that keeps people from doing things that are considered unacceptable, like drinking Dortmunder at 10:00, for example.  It's like AD forces its victims to face each day without makeup.  And they are fine with it.  There is no dodging anyone.  They are who they are, 24/7.  When did makeup become so necessary?  Maybe we can all learn something from the AD community - that we are fine the way we are, 24/7.

Sorry Sephora.


A Picture's Worth 1000 Words

J:  Smart phones are great for so many reasons.  There is one problem though:  they have replaced cameras for just about everyone.  They take better pictures, have higher resolution etc etc.  And when you take a dud picture, you can quickly delete it before anyone else sees it. But the good pictures - the keepers - never leave the camera.  They are fun to scroll through while you are passing time waiting for someone, and they are easy to share with other people via Facebook or text, but the actual, physical pictures rarely appear anymore.  This is too bad

The other day I was sitting with Sweet T going through photo albums. She was great about getting pictures printed - back when you had to take the roll of film in to the drug store - and then putting them in albums.  She even went so far as to label each picture with the event and the date.  And because she was frugal and didn't like to waste anything, she even put the duds in the album. So going through the albums is a real trip down memory lane.  We looked at fantastic pictures from family vacations, and we looked at photos where everyone's heads had been cut off.  It didn't matter.  She loved looking at the pictures.  Each time we turned the page, her face would light up - like a memory was trying to make its way to the top of her mind.  She would point at the picture and smile.  When asked who was in the picture, she couldn't tell me, but she kept smiling anyway.  I would fill her in on who was in the picture, and what the event was.  That didn't really seem to register, but she kept smiling.  Sometimes when I tried to turn the page she resisted, as if she wanted to linger on a particular photo for a little longer.  We could have looked at that album all day.  And those 1000 words would never have been spoken, because the pictures said it all.

A Living Wake

J:  This morning was the Alzheimer's Associations Reason To Hope breakfast that E and I co-hosted.  The turnout was amazing.  As I stood watching people stream in on this frigid March morning I was so moved by the support I felt.  Friends, neighbors, relatives - so many people showed up.  E and I told our story of life with omnipresent AD and another couple told of their journey with the disease.  The program was brief, but I feel secure in saying that nobody left without feeling the impact the disease makes on a family.  

As people were leaving, many stopped to say that they think of our parents often or that we are in their prayers.  I can't help but feel like our parents are living their own wake on a daily basis.  We showed a few pictures at the event, and everyone said how good they both look.  People tell us how much they miss them, and how they are praying for us as we deal with our loss.  And, just like at a wake, we take comfort in these kind words.  We don't have our parents anymore.  And we do need support.  

And since today's theme was A Reason to Hope, my hope is that enough money was raised for research that soon, very soon, no one else will be alive to witness their own wake.

A sincere thank you to everyone who attended today.  We truly appreciate your support.

Beyond Comprehension

J:  I'm a person who likes to figure things out.  I don't like it when something doesn't make sense; it sticks in the back of my mind until I can find some resolution.  But here's one that makes no sense:  WHY do young, vibrant people who are in the prime of their life die when there are legions of people with wasting diseases waiting to die?  I know that my Catholic faith tells me that we must support life from conception to natural death.  I agree with that.  But WHY does natural death come way too early for some, and seem to take forever for others?  

A friend of mine died this weekend.  A beautiful woman with a beautiful family.  Her kids are young adults, just getting started. She had so much life ahead of her - weddings, grandchildren, the golden years with her husband. All of it is gone.  A five year old girl in our city died this month.  A freaky virus attacked her brain and she went from perfectly healthy to dead in a matter of days.  Her family is bereft.  Their precious daughter is gone.

My parents are alive and healthy.  They are well taken care of and deeply loved.  They are surrounded by their family. Though they are not aware of this, they are the "lucky" Alzheimer's patients.  There are so many "unlucky" patients who sit alone in nursing homes, with no one visiting them and no interaction at all. Their lives are devoid of meaning - they have no ability to think and no one apparently is thinking about them.  So how does this equation work?  Vibrant, necessary people meet natural death years before they should, and vacant, lonely Alzheimer's patients sit in nursing homes alone waiting for their number to be up.  

It just doesn't make sense.

Carpe Diem

J:  My husband is a financial planner and recently he has been holding retirement planning classes revolving around Social Security benefits.  They have been very popular, chiefly because most people are worried about whether or not Social Security will be around when they are ready to retire. And if it is around, when should they begin taking their benefits.  As a result of being a good wife who listens closely to her husband, I now know that there are over 587 different ways to claim Social Security benefits.  So it is something that definitely needs some scrutiny.

Clearly, planning for retirement is important.  Nobody wants to run out of money.  However, there is a case to be made for living for today.  Our parents were the consummate planners.  They were frugal.  They didn't live for the day; they saved for tomorrow.  But for them, their tomorrows look nothing like their yesterdays. They plotted and planned for a full and happy retirement.  Alzheimer's disease turned their plans on end.  I'm sure they would have done things differently if they had known what their retirement years would look like.  Would they have taken more trips by themselves, with our family, with their friends, if they had known that AD would pull their passports at 75?  Would they have lived a little larger, sweated a little less, if they knew how few tomorrows they would have under their control?

I've heard it said that when we make plans God laughs. Our plans may or may not be God's plans.  I think God appreciates being prudent to a degree.  But I also believe that God is okay with us seizing the day, enjoying what we have worked so hard for, and enjoying it today.  So take that trip when you can.  Splurge for no reason, within reason. Enjoy your life NOW.  Tomorrow is promised to no one. 


Sweet T's Last Lap

E- This past weekend in Cle temps were fantastic withtons of sunshine. G was on the loose around the Parkway most of the day Sat and Sun. He supervised as we washed the cars and he tended bar for those who were thirsty!

At one point Sweet T emerged from my house and G was stepping across the street with his frozen mug of suds. Together J, G, T and the caregiver decided to take a walk around the block. Sweet T has not completed a full quarter mile in MONTHS...but it seemed an acceptable challenge on this perfect Sat afternoon. Well....not so much.

J claims that at about the half way point of their stroll Sweet T started leaning forward and couldn't regain her balance. J and the extremely pregnant caregiver had to use all of their strength to keep her standing and walking. Thankfully both gals were present because G pressed on with his open container, spilling it all the way around the block!! one more thing to cross off the list of approved activities for our Sweet T!!! We are lucky that she is happy just sitting around inside my house with all of us!!

Collateral Damage

J:  When people hear that our parents are living on the street where they spent most of their married life and are living with E across the street from me they marvel.  I imagine some type of Norman Rockwell family scene enters their mind and they think "what an amazing family"  


Our family is fractured.  We were never a real tight knit group. Birth order, boy/girl ratio, parenting style- I'm not sure what it was that rendered our family anything but close.  But the fact is that, while there were a few alliances throughout the years, the reality of our parents' illness and their subsequent need for care has severed what remained of these alliances.  Some believe they would be better served in a facility, maybe because this would level the playing field amongst the siblings. I'm sure the siblings that are out of town feel some level of guilt because they aren't involved with their care.  I'm sure those of us dealing with our parents on a daily basis often feel overwhelmed by the task, and maybe that translates into being less than patient and kind with our siblings.  Whatever the case, our family ties have suffered.

So what's the solution?  Every time I think of my parents I am reminded of the Hippocratic oath that doctors take "First do no harm".  Putting them in a facility would be harmful to them.  I am certain of this.  So we persevere, our tight unit on the Parkway.  Will we be able to heal the hurt that this decision has caused?  I guess that remains to be seen.

Today marks 16 months that they have lived with E.  I watched E's son lovingly feeding Sweet T on Valentine's Day and I thought "wow, we have created a beautiful thing". Here.  On the Parkway. Sadly, not anywhere else.

'Take Your Dad to Work' Day

E- Lately our Dad has been pretty bored. His interests (as previously mentioned) include eating and drinking beer. He continues to walk around the hood and was recently rescued by a neighbor who found him standing at the top of the valley hill. The neighbor knew who he was so she called him by name and most likely prevented a bad situation from occurring.

Our solution....let's just take him with us as we are able to, that way we will know where he is and what he's doing. Keeping in mind the Dort addiction, J has brought him to real estate open houses or showings with a roadie in hand. J is always able to give the wink-wink to her clients or other realtors to let them know of her 'special assistant' who is accompanying her and she generally apologizes for not having drinks to offer to everyone. This is another opportunity to use our biz cards 'please excuse us, the individual I am with has Alz'.

My line of work embraces the elderly and I have recently interviewed a new caregiver with my Dad in tow. I was briefing G on our way into West Park regarding the gal's qualifications and such and G was listening and nodding in agreement. As we bellied up to the bar with the eager nurse she immediately identified my Dad's deficits and was especially kind to him. And as luck would have it, her Dad grew up with G so he was able to recall some tales from growing up with her Dad.

I am positive that as much as we feel we are reacting to G's changing condition and strategically planning, we are actually being guided by God. How else could the compassionate clients and complete strangers with ties to childhood friends fall into our laps each and every day. It's not luck, it's all part of His plan and we are simply carrying it out in the creative way it has been mapped for us.

Alz All Around

J:  I feel like I did when I was pregnant when suddenly everyone around me seemed to be pregnant.  It seems like everywhere I go these days, I run in to people dealing with Alzheimer's disease.  It's everywhere!  The stories vary slightly - it's the mom suffering, or the dad was newly diagnosed, or the spouse is suddenly so forgetful - but the end result is that they are now coping with AD.  

While the diagnosis is grim and the journey uncertain, the Alzheimer's Association does offer hope.  There are numerous programs and support services to help people at all stages of the disease.  As we have said before, AD is really a disease of the caregiver, and the Alz Assoc realizes this and provides lots of support to help us along the way.

 E and I are hosting this year's Reason To Hope fundraiser for the Alzheimer's Association.  It will be held on Thursday March 2 at Le Centre in Westlake.  It is a quick and easy fundraiser to attend, beginning at 7:30 a.m. and ending at 8:30 - leaving plenty of time to get to work.  At the event you will hear from people who have benefitted from the many services the Alz Assoc offers.  You will also hear about the latest advances in research to find a cure for this disease, which are truly the reason to hope.  There is no cost to attend the event, but there will be a request for a donation made at the conclusion of the program.

Hopefully one day the Alzheimer's Association will no longer be needed.  But until we find a cure, they are a necessary and important group to the millions of people struggling with this insidious disease.  Please join us on March 2 to raise money.  Give us all a Reason to Hope.