Sue's Obituary

 My mother died two years ago now, and it just occurred to me that I never added her obituary to this website.  We had a small but very nice butterfly release celebration of her life at Butterfly Wonderland in Scottsdale where a commemorative memorial is on display with her name.  Sue was cremated and upon further consideration, will join her recently deceased sister, Emily Jane Wade, at the family plot in Winston Salem, NC.  She is sorely missed by many who loved her deeply, but nobody misses her more than me.  Harper does too.  

Funeral Video for Sue Vaughan

Obituary for Sue Vaughan

Choosing a home for your loved one with dementia

 

Where to turn?

Because you have found this page, I imagine that you might be in the process of finding a suitable full-time care solution for someone you love.  First, let me send you my sympathy and a virtual hug.  You are in a heartbreaking position right now, and I truly feel for you.  

This is a 100% unsponsored page.  Nobody has compensated me in any way to share my experience and it will stay that way.  I have no designs on peddling influence or making future alliances with any health/senior care enterprise, and offer my thoughts as an example that you might consider as you move forward.  My mother and I tried a wide variety of options, and were fortunate to have found an industry liaison that worked well for us. 

We visited all the newest and best memory care/assisted living homes in Chandler, Gilbert and even Prescott, AZ.   Some were quite beautiful, but all of them felt prisonlike.  Most of the patients were far more advanced in their disease process, and the ones who were ambulatory wandered the halls and set off door alarms constantly, triggering my mother's anxiety.   We actually stayed together overnight at a few places and ultimately decided against all of them. 

A woman at the Alzheimer's Association gave me the contact information of an independent placement consultant, Barbara Winget.  Aunt Barb's Senior Placement Service found a small group home called Tranquil Living Care Home (TLC) where mom could live in a comfortable house just like you and me.  There were only 2 other residents (who were so sweet!) and two round the clock caregivers that gave her much more attention than a traditional home would have.  

Your loved one's care needs will ultimately dictate the choice you and your family make, but I encourage you to explore the network of small, independent group homes in your area.  The cost was only slightly less than a standard assisted living facility, and there are a few things they may not offer (I had to purchase bed pads, incontinence products and pay for each in home doctor visit, for example), but it was the best option for us in the end.  She had a yard full of hummingbird feeders, orange trees and a pomegranate, and we were made to feel like a member of the family who runs the business.  

Best of luck in your search.  A great fit is out there!   

Checking in with Sue

As the world is dealing with COVID-19 fears and the lifestyle changes that accompany the pandemic, people are focusing on our most vulnerable citizens, frail and compromised seniors.  Several of you have reached out to ask about Sue, and I thought I'd post an update about recent developments.

Members of our family have been extremely critical of every decision I've had to make as her caregiver.  I naively believed far-flung cousins, aunts, nieces and nephews would join to rally in support when it came time to care for any one of us, and I was wrong.  It's not uncommon, unfortunately.  Separate from the devastating actions of my brother, geographic distance and resentments over disagreements that happened years ago have taken a toll on our family dynamic, and now prompt the following statement:


*Refrain from judgment, criticism and gossiping about the care of your loved one.  Show your support for them instead by asking the person/people who care for this person for factual health and emotional well-being information.  Get the full story before rushing to uninformed judgment.  98% of caregivers take better care of their loved one than they do themselves.  They deserve the benefit of the doubt and should not be put in a position that requires them to defend their decisions without evidence of ill intent.  Assume nothing.  Ask.  

A team of compassionate people have come together as a team to provide Sue the care she needs, and I lead this team.  Like all who know her, her caregivers, doctors and other residents in the group home where she lives have come to love her.  She has the master bedroom and a private bath in a house nestled in a quiet neighborhood.  The backyard's stucco fence keeps Sue safe while giving a family of quail and other birds a place to strut to and fro.  There are hummingbirds visiting three feeders, a pomegranate tree and two citrus trees, which mom fusses over whenever they fruit.  It is a good compromise, with fewer residents and a single 24/7 caregiver that speaks limited English.  On the other hand, it is not the institutional setting that no assisted living facility can avoid.  There are no door alarms sounding, no limitations on dining hours and it doesn't smell like a hospital.  

She has some really good days and some rough ones, but is largely very content.  She was hospitalized in early March for 5 days.  This is the third incident where she presented the same way:  Suddenly unable to speak, followed by random gibberish a few hours later, then a gradual improvement over 48 hours to a level of acuity slightly lower than where she was before the incident.

This most recent incident went like this:  Unable to speak upon waking, staring blankly into space and unresponsive to questions, paramedics transported Sue to the hospital.  COVID-19, Infection of any kind and stroke were ruled out after extensive scans and testing.  Although she improved steadily over the next 48 hours, she had two late night psychotic episodes of concern.  Her heart went into atrial fibrillation, and she ripped out her IV and heart monitor and tried to run down the hallway.  Nurses had to use soft restraints and sedate her to keep her in bed.  Mom has no memory of these late night episodes, and now doesn't remember the hospital stay at all.

Doctors believe these incidents might be a triggered response to stress.  While reconstructing the days leading up to this and previous incidents, we discovered a pattern in her behavior.  A significant increase in cell phone use; calling and texting family members had occurred right before ALL THREE incidents.  Sue was discharged with suspected TIA and advised to discontinue cell phone use to avoid stress.

At her group home, the management and caregiving team acknowledged and agreed with the hospital's assertion that Sue had experienced a marked increase in stress directly related to cell phone use in the days leading up to the TIA.  The home's manager sent me a letter requesting that Sue discontinue use of all electronic communication devices except the house phone which can be monitored.

It wasn't easy to take away her ability to communicate with friends and family, but her cell phone use has become increasingly problematic.  She has made repeated calls to extended family members, only to rant incoherently and cause alarm.   Authorities threatened the care home with fines due to Sue's repeated 911 calls, where she apparently asked the operator who had sold her house, demanding answers.

These are hard decisions to make, and with each decision she loses some of the freedom and independence that she holds so dear.  Depriving her of anything, be it her cell phone or a glass of wine, is a last resort.  I believe she should enjoy whatever she wants to eat, drink (within reason) and do.  There is no cure for Alzheimer's, but she still enjoys sunsets in the backyard, watching the hummingbirds and quail. She loves playing with her (formerly my) dog who is overjoyed at every visit.  We watch videos on the ipad and talk and work to assemble jigsaw puzzles that remain unfinished.  

And so, we move forward. Together. 

What's new with Sue?

Easy Rider

...Sweet new ride.

Hello everyone!  Today was Mother's Day, and we had a very nice one.  Mom enjoyed a treasure hunt, finding all the gifts we'd hidden around the house.  She had to decipher a riddle for each hint, and she breezed through it.  I guess we'll have to make it more challenging next year.  

Meanwhile, check out mom's shiny red trike!  It's rather stable and sturdy, so now exercising is much more fun.  Aerobic exercise has been difficult for her due to balance and coordination problems, and her cardiologist insisted on 30 minutes 3x a week.  With our pool, she can ride to get her heart rate up, then cool down with some moderate swimming afterward.  

As she becomes more confident riding around the neighborhood, mom is also making friends along the way.  I'm sure that comes as no surprise to anyone reading this.  

Breakfast Al Fresco

 Spring lasted about three weeks, and has already given way to 100+ degree days.  It may be spring where you live, but out here, it's summertime.  Mom really doesn't care for sunscreen, so every morning I slather it on and put a floppy hat on her head before she waters the garden.  I've learned that like me, she doesn't mind the sun's intensity.  She's oblivious to the warning signs of sunburn and heat exhaustion, so I have to bring her inside during the afternoon heat.  Getting up early makes sense in the desert.  We put a table and a hammock beneath the citrus trees so she can spend mornings reading and birdwatching under a canopy of shade.

Making more friends 

We usually have 2-3 doctor visits each week, although her health is fairly robust.  After her hospital stay for atrial fibrillation last November, her cardiology team keeps a close eye on her and her GP does too.  Mom underwent a nuclear stress test last week, and the results were encouraging.  There are no clots lingering in the chambers of her heart, and she shows only slightly reduced heart function.

 

Nuclear Stress Test warning

One item of particular interest has been a spike in mom's TSH levels.  I happen to know a thing or two about hypothyroidism (every single woman I know in my age group has thyroid issues... alarming.) so I questioned her doctors when they chalked it up to Amiodarone, a drug used to treat her Afib six months ago).  She is responding to synthetic thyroid hormone treatment, however, which is more than I can say for myself.  It appears that mom's thyroid will return to normal function within a few weeks.

We have lowered our carbohydrate intake and have removed most of the gluten and processed sugars from the kitchen in favor of healthy fats and protein.  Mom doesn't think I know about her candy stash in her room, so I pretend I don't.

Class Pet

Our EPIC study wound up a two months ago, but we still see the 'gang' and attend monthly booster sessions so the researchers can monitor our progress and receive feedback.  During our class discussions, Leroy came up so frequently that I brought him to our last class.  Now when the researchers call, they say, 'Aren't you the hedgehog people?'.

I suppose there are worse ways to be remembered...

Early Stage Partners and their caregivers in class

Catching up on 2018 so far...

Other than doing our bit for society, we've worked together on some things.  One of mom's Christmas gifts was a 2000 piece puzzle which somehow became a 1,997 piece puzzle.  Regardless, it entertained everyone throughout the month of January.  Mom did the hard work, though.

Victory!

January

January is always a fun month, as Chad's father and his girlfriend, Jane make a yearly trek to the desert for some golf, exploration and family time with Chad and Liv.  This year's visit was even better than last year.  We enjoyed some local theater, unique restaurants and a catfish cooking competition... grilled or fried?   Fried wins every time.  

Burgers at the Monastery

Catfish Cookoff -Everyone's a winner!

Thanks Lee and Jane, for making mom and I feel like part of the family.  We hope to visit you over the summer in Wisconsin! 

February

Mom's home sold the moment we listed it in February.  Our longtime friend Pam Breakey and her daughter Lisa went the extra mile to make the transaction as smooth as anyone could expect.  She introduced us to Diana with Treasures Estate Sales who truly understood what a difficult endeavor it is to part with a lifetime worth of memories mom had collected through the years. 

Extra special thanks to my dear friend Cynthia Campbell Corum, who made many trips during the months the house was vacant.  My mom and her sisters are nearly as grateful as I am, amiga.  : )

So long, 11700.  

 A lovely young family has moved in, and they have really made the place look great. It's nice to think of their kids running up and down those stairs like we once used to...

March

After our first full season, we are humbled. The garden yielded a harvest that might have satisfied 'Farm to Table Barbie' and her companion, Ken, but that's it.   Tiny vegetables were pretty much all we got, and only the carrots and peppers were delicious.  We learned a lot as first year desert farmers, and will adjust our crop schedule accordingly.  

'Turn it ON!'

Pitiful

Arugula seeds

Birthday tulips from sister Jane

@%*!#

Mom's birthday was a good one this year, albeit unusual.  I decided to pursue my interest in plant medicine and spent a week in the Amazon jungle near Iquitos, Peru.  During that time, mom was a short-term resident in the assisted living facility we've chosen for long-term care in the future.  The staff was very accommodating, even allowing her to keep Leroy in her room.  This made her quite popular among the residents, as curious visitors stopped by for a peek at her weird roommate.  The stay gave her perspective on things, and she was quite happy to come home afterward.  The staff was genuinely sorry to see her go, referring to her as 'most delightful Miss Sue' as we packed up her belongings and headed home.

Since her birthday occurred during that week, she got a special cake baked by the kitchen staff, balloons and a hummingbird feeder outside her window and the whole place sang happy birthday to her.  Chad and Olivia took mom back to my house for dinner,  where beautiful flowers from both mom's sisters welcomed her.  She felt very special and loved, which is just how anyone turning 77 should feel, yes?  Yes.

Eat.

 

In other news - at the time of this posting, Olivia has only a few days left of her first year at public school.  She did great, coming from a Montessori environment, and is looking forward to being an 8th grader next year.  For her 13th birthday in March, look what she got!


That's right... a floppy new member of the family.  She has ruined pencils, clothing, carpeting and countless shoes.  She more than makes up for it in cuteness - and enthusiastic joy.

Cece, Liv's new puppy

What do I do with this?

Mom's face on the photo to the right reminds me of the time I excitedly told my Grandmother Leck that I'd gotten a new puppy.

She looked at me, expressionless, and simply said, "Uh oh.  Better get rid of it."

















During March and April, we spent some time catching up with mom's cousin, Bill Elam.  He just got a beautiful replica of the same weapon he used when he was in the military, and showed it to us with great pride.

Don't mess with Bill.

I love to hear stories of Bill and mom's childhood experiences.  I've learned a lot about relatives I never knew I had, and have a new appreciation for growing up in the 1950s-era south.  We're lucky to have him living so close.

April and May

Birthday unwrapping

Mom's wasn't the only birthday we recently celebrated.  In fact, Olivia, Mom, me and Chad all have birthdays in late March-mid April.  I gave Chad a surprise birthday party which became a reunion for some of our dearest friends and bandmates.

Where are they now: Stereo Blitz

..Same with Chris and Cody

Olivia and Payson flashing signs..

Chad's party and other photos...

Mom and Bill calling up cousin Don

How do you get a hedgehog's vitals? 

..very carefully. 

Pooped.  Asleep in his wheel. 

Cinco de Mayo at the park

Cactus Farmer

Getting ready for a night out...

Harper is still #1 

Jackfruit adventure

TEDx Tucson (2nd row)

So that's all for now.  Mom says hello to everyone, and hopes to do some traveling in June, now that doctors have given her their blessing.  Love to you all and please feel free to send mom a text message, email or comment on this page. She'd love to hear from you!

Beautiful Beautiful!

2018 - a welcome change

So long, 2017.  Make way for a better year to come. 

Christmas morning

We spent a lovely, quiet Christmas in Phoenix this year, enjoying one another's company while adding a new member to our family: LeRoy Amok Vaughan-Hanstedt!

...At six weeks, he is exploring his new world eagerly while Harper watches with rapt attention.

Cute, but hard to cuddle...

Mom had hoped to travel to see her youngest sister, but those plans fell through as ever. Hopefully one of her siblings will respond to my invitation to see her someday soon. Her heart is operating at about 55% after being hospitalized in November for Afib and congestive heart failure.  She has lost some weight, but her health overall is good.  Our single biggest challenge remains keeping her hydrated and well nourished.  Eating just doesn't appeal to her very much anymore (with the exception of ice cream).

Most days are pretty good for her cognitively.  She experiences sundowning nearly every day and has regular bouts of sorrow that bring tears, but these pass and give way to contentment as long as she has someone to reassure her that things will be okay.  As a ratio, I'd say we enjoy 12 laughs for every cry.

We have joined another clinical study (together as a dyad) that will follow us over the next year.  It's called EPIC - Early-stage Partners In Care, and is sponsored by Arizona State University and the Alzheimer's Association.  Interestingly, all of the patients in our group are men except for mom.  Their spouses are their caregivers, so we stand out when discussing our experiences with the research team.  So far it's been a positive thing, sparking important conversations between mom and myself that we wouldn't have been likely to have otherwise.

A clinical trial for PREVENTION in siblings/children of Alzheimer's patients is recruiting currently, and I may participate.  Chad got me a 23 and Me kit for Christmas, and I'll send my DNA for testing this week.  If I inherited the APOE genetic mutation and/or a specific allele, I may qualify for the trial of two investigative drugs that could prevent Alzheimer's disease.   I wonder what else my genetic and ancestry reports will reveal.  I'm more than a little bit nervous about what I may learn.

Curiosity wins out, however.  :)

Our garden is handling the near-freezing temperatures pretty well so far, and I cover the beds every night.  We did lose most of our eggplants, and the peas look like they're next.  Artichokes and broccoli are good and the Swiss chard, kale and lettuces are thriving in the cold.   Next year we'll have artichokes and zucchini to add to our summer harvest.  ...And don't get me started on grapefruit.  We have literally hundreds turning pink on the trees, sweeter than ever.

Phoenix Pharm workers

Searching for the perfect Christmas tree
near Prescott, AZ

2018 promises to be a year of growth and unity among those of us caring for Sue.  Fortunately, I have Chad, Olivia and mom's cousin Bill as a support network locally.  Mom's sisters live busy lives in Dallas and Virginia, so having our team here as well as the Area Agency on Aging is truly a blessing.  There's no way I could give mom the care she deserves by myself, and I appreciate the experience and time that other people have spent educating us.  I hope 2018 will bring family visits and more new friends for mom.

So, happy new year to all!  Mom's house will be listed after her estate sale in late January (thank you to the extended support network of Irene Jones, Rebecca Kress, Susan & Marv Johnson, Pam Breakey, Diana, Tom & Cynthia Campbell-Corum and Mom's friend, Dave!) and should sell quickly.  She will miss her beautiful garden, but we'll hold on to fond memories that were made in Overland Park.  It was a great place to grow up, and it seems right that a growing young family will move in and start their own adventures at 11700!

Mom sends her love and talks about her friends often.  Feel free to call her cell phone any time... she would love to catch up with the people she misses so much (text me first and I'll be sure she has her phone). Better yet, come for a visit!  You are always welcome in our home... as long as you don't mind sharing space with a hedgehog.   :)

Here's to 2018... may it bring health and happiness for all of us!

2017 Photos

Check out some photos from 2017!

Hummingbirds


Family

On being a caregiver... Dementia vs Cancer - or maybe spouse vs. parent. Both.

I was my husband's care partner during his battle with cancer in 2015. Thoughts about different caregiving scenarios:

I'm reminded of the title I chose for Terry's blog, written over the year before his death in 2016. 'Curse of the Caregiver' is so apt.  It is a mixed blessing, of course, being a caregiver.  You get to spend this powerful, poignant time with the one you love and that is precious.  But every day unfolds to present you with the same, incessant truth in the background of all you do.  Here it comes... Even in the throes of a fun activity on a very good day:  This person is dying, and you are powerless to stop it. 

In the context of Terry's terminal cancer, it was made more difficult by the fact that he was unable to discuss his impending death.  He insisted on a 'go, fight, win' narrative that became tedious and, finally, ridiculous.  But, it was his choice and I respected that by participating in the charade.  It was his coping mechanism, and it had brutal post-mortem consequences for me that I'm still paying dearly for.

In the context of Alzheimer's disease, there is a terminal diagnosis that can stretch itself out for a decade or more.  The only certainty is that there isn't any hope for a miraculous turnaround.  Not one person has survived Alzheimer's, and so every decision made is palliative in nature.  The difficulty lies in the fact that no matter what you do and how much you give, the choices suck either way.  Even when you've discussed their care wishes and understand them thoroughly, they may regret that choice later when it's time to implement it.  At what point should they not be allowed to change their mind?


I see other caregivers put their partner's wishes into action, then take the consequences as if they had made the choice on their own.  Strong, supportive, stoic families turn on one another frequently and disintegrate amid misunderstandings and accusations. They judge, uninformed.  It can get ugly for the caregiver and the patient. 


There is no way to win.  All you can do is make sure you've got the medical knowledge and legal protection you need to back your every move.  Then, make your choices with a mindset of true loving compassion for your patient and move ahead, ignoring the fallout.

If you really want to support a person who is caring for another, then share your opinion whenever appropriate.  When they make a choice for their loved one, rally behind their choices and don't withdraw support if you disagree with their decision.   That's a real blessing in the face of such a personally defeatist endeavor as becoming a caregiver.