Tag Archives: alzheimer’s

Month of May: A Reflection on the Last 5 Years

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“To every thing there is a season, and a time to every purpose under the heaven …”Ecclesiastes 3 

May … Five Years Ago

Melissa and I picked up stakes, our business and our lives, and moved from Tallahassee, Florida to Richmond, Virginia.

The sole purpose was to be caregivers.  My mom, Helen, and sister, Nel lived together and were both having dementia related challenges that were getting worse by the day. We had observed this for some time, but didn’t even know where or how to help.  As time went on, we saw more and more disturbing signs when visiting, and we learned even more through conversations with friends and relatives in Richmond.

The whole rationale for moving to Richmond seemed simple at a distance. My family had always been there for me. I had to be there for them. It was the only choice I could make. And, Melissa supported that choice all the way. The challenge was we hadn’t googled “primary caregivers” to even know what our new role really meant.

After arriving in Richmond with no plan in hand, exploration, discovery and being totally overwhelmed at every turn would be the be the best way to describe it. We had dealt with hurricanes, sinkholes, alligators, sharks and other dangerous things … but nothing prepared us for this.

And, this didn’t even include being homesick for Tallahassee, where Melissa and I started our leadership development firm, Catch Your Limit, had a home, friends and the Gulf of Mexico as our playground. Did I mention we loved to fish?!

The welcome wagon was not exactly here to greet us when we arrived in Richmond.  My Mom and sister were an extremely strong, independent, self reliant duo. We had talked with them at length about our decision to move to Richmond, but the reality of us coming hadn’t sunk in (or possibly even registered with the dementia challenges) until we walked through their front door after our 12 hour drive. Nel, greeted and hugged me, and immediately said, “Hi, Tom … great to see you, when are you leaving?”

Mom had even asked someone to call Henrico County Sheriff’s Office upon seeing the moving van arrive to let them know that we were not needed or welcomed here and to have us escorted from town if necessary.  Our move was threatening to them in so many ways.  But, Mom and Nel were running out of options.

The dangers surrounding Mom and Nel’s challenges with dementia were increasing.  But, we were limited in what we could do from afar.  Below are just a few examples:

  • Once on a visit, we talked with them about driving and took away their car keys and disconnected the battery only to have “friends” step in, override our family decision and enable them to get on the roads and endanger themselves and others once more (Nel could no longer find her car when parked in the 7-11 parking lot … the 7-11 she and mom visited multiple times daily to get Big Gulp refills). And, there were lots of dents all over their car that they could not explain. No telling how many they left on other people’s cars.
  • Mom and Nel collectively refused medical attention of any sort.
  • And, in the year before we moved, Mom’s attorney had contracted with 24/7 caregivers, which was most needed, but the estate was hemorrhaging so much money that we were already having discussions about when their assets would need to be liquidated.

Only once we moved were we able to dedicate the time necessary to navigate the available resources, build a team and understand how to ask for help. Fortunately, within a couple of months, we found a doctor who would make a house call and my sister’s behavior was diagnosed as early-onset Alzheimer’s.

May … Four Years Ago

My daughters and I were grieving for Nel, she had passed away March 28th, just  a little over one month shy of turning 65 on May 10th.

One year to the day after we moved to Richmond, I started this blog … my91yearoldmom.com. I decided to keep the domain name, and celebrate her new age and stage every Christmas Day. Yep, mom was a Christmas baby … and this coming Christmas, she will be 96.

This was my introduction to the blog …

“If you are, have or even anticipate caring for an elder parent, sign up for my blog and join me on my journey with my 91 year old mom. You’ll find laughs, tears, insights, and lessons learned (often the hard way) all along the way. One thing I promise you on this journey (that has no road maps), no two days are ever the same! So , join us … mom and I could both use some company.”

May … One Year Ago

I wrote a blog titled “Step Mom”. It was about having permanently grounded mom, but not for bad behavior, goodness no!

You will have to click on the title to read the rest of the story.

This Last Day of May 2015 … Today

Between that first May date (that seems like one part yesterday, and one part an eternity ago) and now, so many things have happened. So many lessons learned. So much still to learn.

I am grateful for my mom for continuing to be my inspiration and my teacher.

I am grateful for becoming a caregiver.

I am grateful for my entire family that supports me, even as I learn.

I am grateful to you for being a part of our journey.

I am grateful for learning so much more about life, love, caring, grief, hope, faith, sorrow, joy … to everything there is a season, and a time to every purpose under heaven …

That choice Melissa and I made to move here in May, five years ago … it was the right choice … it has changed our destiny, who we are and who we will be, forever.


May 10 … This Little Light of Mine

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It is May 10th … again.

It is my sister, Nel’s, birthday, the fourth one since her death, March 28, 2011.

She would be 67.

There is no cake.

There are no candles.

But, there are the bright lights of memories only Nel could have created that still shine in the hearts and minds of those who knew her.

On the darkest of nights, Nel was my beacon, my inspiration, my sister, my mentor and my friend.

Her legacy is as bright as the sun.

On this day, I celebrate Nel’s gift … the light that shines in me … it continues to bring me warmth, comfort and joy … let it shine, let it shine, let it shine.

On this day, two years ago, I posted May 10th, Another Would-Be-Age Day.

I invite you to go and watch the video of my mom, sister and me singing The Gift to be Simple.

You will experience Nel’s gift to all of us first hand.

I love you, Nel.

May 10th, Another Would-Be-Age Day

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It is May 10th.

It is my sister, Nel’s, birthday, the second one since her death, March 28, 2011.

She would be 65.

Birthdays followed by would-be-ages are bitter sweet.

My dad’s birthday was in April, and it was a heck of a day to get through for me, even though he passed away in 2002.

Today, I searched my blog posts for the following video. It was taken on Thanksgiving Day, 2008.

My sister was showing signs of what would later be diagnosed as early onset Alzheimer’s, but you sure can’t tell it here.  As you can see, her joy was still as contagious as her voice was strong.

I have clicked on this video again and again, today.

I sing along. I laugh. I cry. I whisper how much I love her and how much I miss her.

The words and the simple melody of the song give me the strength and courage to continue down this crooked path of life.

Our harmonies are as familiar as they are comforting.

There we are, Nel, mom and me and somehow it seems like only yesterday, although I am fully aware that it is today.

Nel is dedicating the song to my daughters, Tovi and Lissi. My sister adored “her girls”. And, “her girls” adored their Nel.

It is May 10th.

I love you, Nel.

Click to learn more about my extraordinary sister on the Alzheimer’s Association’s website.

Kin to a Ghost

Scene: Driving into mom’s driveway with mom after picking her up at adult daycare.

Tom: Look at that big old house, mom! It’s called Cheswick, but I call it the “Helen House”!

Mom: The “Helen House”! Do I live there?

Tom: Yep.

Mom: Did I make it that charming?

Tom: Yep! You did it!

Mom: Well, in that case, I need to work on it some more, because it is charming!

Tom: Yes it is.

Mom: Who lives there, now?

Tom: We do, mom. You and me.

Mom: We do? That’s a mighty big house for just you and me. Who is in there, now?

Tom: Nobody, mom. We are out here.

Mom: Well, we need to get in there right now so it won’t be lonely.

Cheswick - 1796

Cheswick, the house mom lives in and has lived in since my dad and she bought, hauled 500 yards from its original location and restored in 1973, was built in 1796.

That’s means it was built only 20 years after we won our independence from the Brits!

Mom has lived in the Cheswick for 38 years.

The Franklin family, who my folks bought it from, lived in it for 90+ years. That only leaves eighty-some years unaccounted for, although I do know a Baptist minister ran a boarding school at Cheswick prior to the Civil War.

This is curious because my dad was a Baptist minister as well, and mom was a teacher before she married dad. What are the odds?!

My two daughters have always suspected this old house is haunted and with creaking floors and squeaky doors, it sure seems like the right place for ghosts to want to hang out. After all, Cheswick is 215 years old! You have to believe a gaggle of ghost would have found it to their liking by now. They just don’t make houses made for haunting like they used to.

If there are ghosts in Cheswick, they could be coming from any of the handful of families that have occupied it, but one thing is certain, after last night, I know one of them is coming direct from my family tree.

Although it was a quick encounter, I know who this ghost is. And, by all rights, I should know, After all, I was kin to her when she was living.

The ghost I am referring to was my younger sister, Nel!

Last night was not only a quick encounter, but my first with my sister the ghost, or any ghost for that matter.

Here’s what happened.

My mom sleeps in a four-poster bed my dad made for them about the time I entered the family as the first born.

I don’t think I was conceived on that bed, because I don’t believe my mom and dad ever did what it traditionally takes to make babies. I think my sister and I were “lowercase immaculate conceptions”.

I just can’t picture my mom and my dad, you know, doing what it takes to make babies. Period.

But, hey, that’s not what this story is about. That’s what therapy is made for.

Anyway, when my mom crawls into that four-poster around 7 to 8 pm, she gets lost somewhere close to the center of its great big mattress, tucked away under a sheet, a blanket or two and a hefty bedspread. It could be the middle of summer or winter and it’s always the same.

She is one tiny bug in a big rug, that’s for sure.

Every night, she keeps the two table lamps located on either side of the bed on all night, but dimmed down real low.

She doesn’t really need the lights, because once she has settled in, she has settled in and most times sleeps all night without even once getting up to go to the bathroom.

Her bathroom ritual occurs just before she crawls into her bed and just after she wakes up around 8am the next morning. It’s like clockwork. I am with her all the way to make sure she doesn’t fall. I call her my little Weeble Wobble!

Four nights a week I sleep one room over from her so I can stay close in case she needs me or to calm her after an occasional bad dream.

Even though the two rooms have a door between them, I keep it open.

I also keep the receiving end of a baby monitor close at hand with the transmitting end right next to mom’s bed on the bedside table

The room I’m in was my sister, Nel’s. She slept in it, right next to mom and dad from the day they moved in until her death just this past March after a long, hard fought battle with Alzheimer’s.

Last night, the ghost, that I will call Nel until proven otherwise, brightened and dimmed, brightened and dimmed, brightened and dimmed the table lamps in mom’s room that I had dimmed after helping mom get to bed earlier last evening.

I counted three sequences before Nel turned them completely off, only to turn them on and then off again, you guessed it, three times.

All of this happened around 6 am. I couldn’t help but witness it while lying, eyes wide open, in Nel’s bed in what was her room. For some reason, I suddenly felt like an intruder … an uninvited guest.

I crept into mom’s room to make sure it wasn’t her playing games with the lights, which it wasn’t, because the fact was she was oblivious to what was happening. She was sound asleep and I suspect preoccupied playing the leading lady in an adventure filled dream of days gone by.

There was no one hiding under the bed or in the closets. Plus all the big old doors to the outside were locked tight. Believe me, I checked.

And, there was no sound of anyone walking in or near mom’s room. As I mentioned, this old house creaks even with the lightest of footsteps, so being stealthy, at least as a human, is impossible.

It was getting downright spooky and my sister, though I never saw her, was, almost instantly, my number one suspect.

One, she was a joyful prankster.

Two, mom had screamed out Nel’s name three times in a restless sleep earlier that night.

Three, Nel knew those lights and the rheostats on them like the back of her hand.

Four, there didn’t seem to be any malice associated with this brief encounter. And, my sister never had a malicious bone in her body.

It just seemed like a friendly ghost with way too much time on its hands.

Or, and this is my theory, one that wanted a little attention from her mom.

But, the real giveaway was the baby monitor. I heard the constant static sound from the receiver in Nel’s room suddenly stop hissing, but the LED light was still burning red, so it was on, indicating the electricity had to be on, too.

Three different times, I went into mom’s room to find her sleeping and the red transmitter light off on her monitor. And, yes I checked the electricity there, too, and the power was on. Yet, when I would go back to Nel’s room, the static sound would be back on … indicating that somehow, mom’s monitor was again up and running.

Three times this happened and my sister loved to do things in threes. She had to know I was staying in her room and that the main connection between mom and me was the baby monitor. Smart sister! She was connecting with both mom and me at once. Real smart for a new ghost, but Nel was always a fast learner.

For a split second, I thought the ghost could have been my dad who passed away in 2002, but then I didn’t think so because even though he was a prankster and funny in his own right, I believed he had too much respect for mom to wake her up or startle her while she was sleeping.

I also didn’t think it was dad and Nel because they would have used an old ghost trick and teamed up to make lots of unexplainable things happen at once. You know, spinning clock hands, whirling chairs suspended in mid-air, shoes walking across the floor seemingly on their own … that sort of stuff.

No, the more I thought about it, this was a one ghost job and a ghost that had been one big part of our family.

I also think the motive was pretty clear, if ghosts still have to have a motive like we mortals do.

I think Nel was playing gentle pranks on mom because, as I mentioned in an earlier blog post, The Three Things in Life We Cry About, mom doesn’t remember Nel (except in her dreams, when she calls or screams out Nel’s name), hasn’t grieved for her and refers to her only as “that girl”.

These two were inseparable in life, so much so that we called them both Nelen! So, I think it has to make Nel a little sad, no, very sad.  Although, being Nel as well as being an angel moonlighting as a ghost, she must have a heavenly gift of understanding everything and must realize that it’s mom’s dementia that keeps mom from remembering her daughter and “bestest” friend.

Besides, Nel never had it in her to be anything but loving with mom, or anybody for that matter, so I can see how just a little playing around, in order to connect, might seem quite appropriate to her.

Maybe she just wanted to get mom’s attention in a gentle way and to whisper, “It’s Nel, mom. I am still here with you and for you, mom. Between dad and me up here, there and everywhere, Tom right there next to you, and Tovi’s and Lissi’s families just down the road, we’ve got you covered. It’s all going to be alright. We promise, mom.”

Maybe that’s what it was all about … a promise.

After all, I am a believer … as I always have been when it comes to my family.

The last thing I did before going back to bed was dim the table lamps in mom’s room, pull the covers up under her chin, kiss her forehead and whisper, “We love you, mom.”

This Little Light of Mine, I’m Gonna Let It Shine

The speaker at a seminar that I recently attended said dementia is like a light bulb in the brain that has somehow switched off.

But, she added, every now and then, and almost always unexpectedly, that light bulb switches back on, shining brightly.

The other day when mom was telling me what animals, people or things she was seeing in the clouds her light bulb lit up and was so bright, it out shined the sun.

She switched from describing an elephant she was pointing at to a conversation about my sister who passed away in late March after a long, horrific battle with Early Onset Alzheimer’s.

Mom totally caught me off guard, not only for what she said, but that she was talking about Nel in the first place.

Up until this moment,  she had only mentioned Nel by name twice since she died. And both times it was when she was having what I could only describe as nightmares, because she would scream out, “Nel, Nel, are you Ok? Nel, why don’t you answer me?”

It scared the dickens out of me both times, because mom is such a sound sleeper.

On both occasions I ran to her room, held her in my arms and both times she opened her eyes and  asked me where Nel was and if she was alright.

I whispered that Nel was fine, and with that, mom fell right back to sleep without a peep the rest of the night. And, the next morning, there would be no recollection of a bad dream or my coming into her room whatsoever.

Here’s what mom told me when the light bulb in her brain switched on.

“That girl (referring to Nel) could sure sing!
She sang songs her whole life. And, she spent her life caring for people.
A lot of dumb people said that was a waste of time, but she was good and always did wonderful, nice things for people who needed help.
I don’t think that’s a waste of time.
That girl was good her whole life.
She was a good girl.”

And then, in a blink, there was nothing but darkness and silence.

The next thing  I remember was mom pointing up in the sky again and trying to get my attention, “Look over there, that looks like a man’s head and his big mouth is open and he is eating another cloud. Do you see that? His lips are huge!”

 The fact is, I did see the man and he looked exactly like mom described him. And, his lips were huge.

Later that evening, after tucking mom for the night, the light bulb moment triggered another one I hadn’t thought about since it happened.

The night before we called 911 to have an ambulance take Nel to the emergency room, mom, Nel and I sang, ” This Little Light of Mine.”

And, Nel, who could hardly complete a sentence by this time, clapped her hands and sang every word perfectly in her beautiful soprano voice. The voice of an angel.

The next night she was he was admitted to the hospital and a few days later taken to a hospice where ultimately all of our prayers were answered and Nel was, after years of fighting a losing battle, was at peace. I closed her eyes, told her how much we loved her and  that dad would sure be happy to see her and show her around her new home.

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