I Wish I Could Have Said Goodbye

I started composing a few thoughts several days before what would have been Bill's 67th birthday on Monday, February 4th. It's as if I need to write 'into' it for several days to post on what would have been a day of visits, cards and his favorite Edgar's Strawberry Cake.

Just another first, I am reminded of a Words of Encouragement card I just received from my good friend, Valerie Springer. It goes something like this...

"Believe in yourself,  you can do it. You can and you will get through this. Search within yourself and you will find strength and hope for tomorrow. I am your friend, I care and I am here for you whenever you need me."

Then she pens, "A year of first(s). The best is always, the first or new. Praying you will spread your wings and fly this year. God wants our first offerings, first thanksgivings, first hours of the day for prayer and first new experiences to be give to him. This is a first for you in this new season."

I keep bumping into people who have lost a spouse or partner at around my age. Where relationships were long, so many experiences were shared, children and grandchildren are a part of your lives. Travel, hardships, good times and bad. Plans, dreams and goals. If you had been together this long you were bound to be best friends.

True, I had life experiences before Bill. But what of our children who knew him from their first breath? And, what can I share with them about his last breath? And, isn't it odd, that even though you know your loved one is out of pain, there still remains a level of guilt within us?

I immediately experienced 'survivor guilt'. That I had somehow managed to survive this great trauma and he had not. That I would live to see our children and their children. That I would travel and taste and experience.

Then within a few months, I began to experience another wave of guilt. 

• Did I tell him I loved him often enough?
• Did I do everything within my power to make sure he was comfortable and well taken care of?
• Did I comfort?
• Did I sometimes lack patience?
• Did I sometimes want to just run away?
• Did I think of the burden on myself too much?
• Did I put myself in his shoes?
• Did I fight hard enough, demand the respect for him he deserved?
• Did I seek out the best medical care possible?

Having to justify and answer the above questions have eased the pain. The asking and then pulling from my memory days, times, moments and pictures that qualify and quantify the answers. Where I found myself lacking in the process, I just dig a little deeper. I may not have done it all exactly how it should have been done, but I believe now that I did it as he wanted.

Family and friends:

For Michelle and I, it was a life changing experience. I saw Wade rise up to do the unimaginable to protect his baby sister. For my neighbors who witnessed something I hope they never have to again as we fought in earnest for another breath, Then, for racing me up the interstate to get to Little Miss. For Amy and Wade who never left my side. For my friends who were here within hours and left nothing for me to think of or do. For my besties who watched over me while I slept. For my neighbors who continued to feed and minister to us. For Bill Vogel who gathered their bunch up and came running. For Unk and Kay who put it in the road. For Mike who left it all and rescued his mother like he always does. And, for Little Miss and Susie who have suffered the most. They continue to carry a heavy burden and unnecessary guilt.

"Because you were not here every minute. Because you were not here at that last breath. Because you think there was something else you could have done. Because, like me - you wish you could have said goodbye. Trust me when I say that Dad knew he was loved. That his family brought joy to his heart. That he knew that our actions and involvement, sacrifices and time were for him."

Feeling more like myself each day, I have to wonder, "Who is me?"

As if to rekindle, it requires such an emotional journey to delve that deep, to try and get to a place where you were - when how you got here defines you. Then, to realize in just a fleeting moment that who you were is no longer relevant. Myself is who you've become through the process.

It also makes me wonder about the people who have to go through the end of their life without love and compassion and it delivers a certain sadness, as our mortality is real. You do not take your boats and 4-wheelers. You do not take your life savings or favorite watch. You do not take your loved ones with you. You do not witness the hundreds who stood in line to comfort your family in your name. But to know that at the end of your life you made such an impact on others that you were surrounded by love is really real.

Just yesterday when cleaning up around our community pond with the neighbors, I imagined him there. Standing at the dam with a rake in his hand, telling us all how it should be done. Rallying the troops, directing traffic, cheering everybody on, telling jokes, laughing out loud with his head thrown back. Then, it occurred to me last night that I had inadvertently taken on that role. In my mind, it was me turning cartwheels down the cart path.

Caregivers:

Cousin Mark Brown whispered in my ear just after Bill's funeral, "You need to understand that you are going to feel two emotions at once that most in their lifetime will never have the opportunity to feel. Grief and Relief."

One may think (as I initially did) that the RELIEF he spoke to was intended for me. That I would feel relieved of the burden and responsibility. Not so. Mark Brown knew better. It did take me some time to completely grasp it, but what I know now is that Bill's cousin knew me well enough to know that I would eventually feel my husband's relief.

The encouragement from around the world to continue writing creates a battle within me. I remain in awe of the many sufferers and caregivers in search of answers or just a comrade when feeling sadness, guilt, exhaustion and loneliness. 

Then, such a turn of prose. Several years ago the angst in telling a daily story of what really goes on while living with Alzheimer's, I respectfully delivered a tale with comedic undertones.  My self-deprecating style and mantra of laughing at oneself presented a platform that we were completely unaware of. Yes, it is true the primary caregivers carry the load, however my 'brand of caregiving' never saw it that way. It has to be within you. Is it duty you feel or is it love? The long-suffering duty within me will continue to write with raw honesty but I now find the laughter hard to muster. Just as I referred so fondly and characteristically to him as Willie Bill and WB during the war, the day he left me he was Bill.

You can reach back in the articles to find it, but pay close attention to the turn in focus. Dutifully, I hope this in some way can assist others while providing care, fearing loss or feeling lonely. However, the paradigm shift created a soul searching, gut wrenching, mind boggling race to carry on. Now, it is selfishly less a story for comforting others than a document of emotions throughout this time in our lives. Something that our children can hold on to. If one can read through the tea leaves to find any measure of relief, then perhaps we have accomplished something else as well.

I will never forget Wade saying to me, "I will always love you for taking such good care of Dad."

It was a precious moment. Because it was always love. Not duty. But, to have no guilt at all would be unrealistic for our bunch. We have strong opinions, high expectations and above all we think and love deeply. So, go away guilt. Go away from me. Go away from our children.

Perhaps then at the end of the day it matters not the many times we told him, no matter the last words we spoke, we still wish we could have said goodbye.

Planning for a bittersweet day on Monday by staying busy and productive. I shall recognize his 67th birthday (another first) with memories of all the celebrations we had enjoyed so much together while acknowledging that we (as a family) did everything we knew to do. And that regardless his state of mind, I know without a doubt he knew it.

Happy Birthday, Honey. Perhaps gone from our lives physically, you will always be with us as we carry you in our hearts wherever we go, whatever we do, whomever we become.

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffered from Early Onset Alzheimer's Dementia.

Friendships, Un-Plugged...

"Close friends are truly life's treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone."  Vincent van Gogh

To hear it so many times, to say it more often than not, to express what happens when life gets in the way of friendships...that you really know who your friends are when you're going through adversity in lieu of prosperity. Everybody's thought it or experienced it at some point in their life. Feeling used because somebody didn't give enough, didn't call or write, didn't step up when the going got tough. At the end of the day, how is that measured? Is that what friendship is about?

Party like a rock star friends, travel around the world friends, best in fine food and wine friends, all the bells and whistles friends, because we were in the same place friends, childhood friends - those relationships were in high quantity and filled us up.

I could spew the emotional travesties of lost friends for weeks and months, and then most emphatically convince you that I was the ultimate giver, the best friend, the one who contributed the most, because that is how we see it. Is it ever really our fault when friendships go south?

Sure it is. Let's be honest with ourselves, we were probably solely to blame for the majority of lost relationships simply because life's timing just has a way of screwing things up. Whether it's a move, a family issue, career change, life altering circumstance, physical or financial loss - it happens. And unfortunately, we let it.

Most telling is that we change.

Paraphrasing yet again, "regardless of the pedigree of loss, it you haven't experienced it, you won't get me". We now communicate differently. Actually, we speak a different language. One that cannot be taught, but one that must be learned while treading the rough waters of the cesspool. Whether it's loss through death or divorce, physical or financial, it's loss. If you've lost a spouse, lost a child, lost a job, lost a business, lost your life's savings, lost your home - it's a loss. If you've been fortunate enough to have skated through life's perils without it, you are probably not my friend. You've missed the memo inviting you to this special little club, the club you never want to be in.

So, we mourn the loss. The loss of friendships that cannot survive the loss.

I was reminded yesterday that, "These unfortunate losses can begin to define us and if not checked have the ability to cast a nasty curse on those we care the most about."

For those in the club, isn't it true that:

• The most insignificant things to some may be hurtful and debilitating.
• It doesn't matter where or who we come from, there is a likelihood that we all end up in a similar space.
• Our perceptions about someone or something is only true to us until we take the time to know better.  
• That the 'lost ones' are typically more sensitive to (words) and may easily misconstrue actions and comments by others. We think harder and deeper and long term.
• We analyze, turn it inside out, take it apart and put it back together again because we're in a debilitating situation and want to make damn sure that if we ever climb back out, we stay out.

 
So, we begin to regain our footing, find our way and (oh hell to the yes) allow karma to work it's magic. Praise God, we can celebrate the relationships that begin to rise like a phoenix from the ashes, the friendships you would have missed if life had not gotten in the way and made room for the best friends, ever. To be who you want to be, to say what you need to say and all the while feel loved unconditionally.

Even though I've misinformed my myself about the friends that come and go through loss, the fog is lifting. You had this, then life changes. You now have this, because life changed. It's taken me far too long to realize that today my safe harbor are really those who know my biggest loss is just on the horizon. They're not in the "run for the hills because it got messy category" or the "I am here because we've been through this together category", but most importantly they're in the "here and ready to save me, regardless category".

Fortunately for me, all was not lost, and not all perished. But the cream has a way of rising to the top and I find myself gently and selectively sharing with my lifelong steadies the raw plethora of feelings and ideals that emerge. Because without loss, they will never get to this next level of understanding and humility. It's when the opportunities to think differently because you have to, create a desire to really think and do what you want facilitates pure liberation. Doesn't sound so Rock Star?

This Spring and on the cusp of a 50-year milestone, I am a lucky girl to feel so abundantly loved and understood. When the best birthday present so far is a blinged-out parachute for a softer landing...now that's Rock Star!

"People, the shit is going to hit the fan, it could get ugly and we're not going anywhere category."

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Throwing in the towel......

Throwing in the towel, waving the white flag, I surrender. Well, on some levels anyway. On others, not quite so fast. Cannot imagine this turning into a literary masterpiece, just a little metaphoric update.

Several things going on the Alzheimer's front. First, WB has had a prescription change. Supposing it is like any medication you take over a long period of time, it just quits working or your illness is moving so fast, the medicines cannot keep up.

Psychotic behavior and anxiety are what we battle most days. You say the word 'psychotic' and may think of padded cells and straight jackets. Whoa Nellie, not so fast.

In this ring of fire, dreams are really hallucinations. If you know a dementia patient who wakes  in the mornings or from a nap believing they were late to play a baseball game, that their deceased grandmother is coming to dinner, that the boogeyman is coming to get their stuff ~ its time to up the Seroquel (Haldol). The side effects are scary, but the positives outweigh the risk.

Think about it: You dream (hallucinate) that someone is after you and out the door and down the street you go. Or, you may grab a weapon. Hide? There's really no telling what I might do if I truly believed someone were after me. They may have bad luck....

I also never want to be on the receiving end of a psychotic episode, again. That was the day I had bad luck....

Since this symptom of Alzheimer's Dementia may surely cause some level of anxiety, (and it does for WB) Dr. Counce has added a new medicine to help with that. He's now cool as a cucumber, gentle as a kitten, amiable and laid back. Am hoping this cocktail will get us through the holidays.

Even though the first 10 days on the new medicines were a hot mess, I can see the both of us adjusting. When he gets an adjustment, we make adjustments.

This time last year, we suffered a set-back. We are still not certain what caused the mini-stroke, but it knocked him out of the Bapi clinical trial and had me scrambling for cover. It was only after his doctors changed the medicines that I had a change of heart. Those few days were so bad, I ordered up a social worker, a therapist of every flavor and an appointment with Medicaid before WB was ever released from the hospital.

Then, I took it all back.

There was an immediate flood of concern and assistance. There was rallying and a circling of the wagons. Then eventually, we settled back into the same routine with occasional visits from family and friends and the opportunity for WB to go and visit family in their homes ~ 

News flash on that, he's not going. He's pretty much not going anywhere for very long where I am not (going).

Throwing in the towel.

The paperwork was mailed off today and my fingers are crossed in hopes that he (or I) get the approval for respite care. Its really just another workaround. Working around WB and what we can do to help us help him without creating too much drama. Trying to make it easy, trying to slip it in without too much commotion. Will he sit with some unknown person for 8 hours so that I can run away once a week? Its a test, for sure. Generally when I'm away for just a few hours, I find him sitting in the garage waiting for me to pull the car in.

The work and documentation that goes into these applications will separate the men from the boys. No wonder so many people needing the services never get them, as you had better have kept every piece of paper that came into the house for at least 5 years.

"The Donut Hole", "The Gap", and now "The Look-Back" period for Medicaid. Somebody really needs to write a book on how to survive it.

So, most days I still continue to study, accepting that unless there is (more) bad luck for me with a mac truck, the odds that I will most likely survive my husband of nearly two decades are hardcore. Hard to fight change when it comes dosed out like this, but it could get really weird. With the kids grown and raising families of their own, my own tired self wonders which one of them will accommodate their mother in a travel trailer sporting a WiFi antenna in their back yard?  We'll see.

Now with a new social media account, WB sits with me at the computer with a purpose. He enjoys getting the occasional message from school chums who remember him. They tell the best stories and I answer back what he remembers. It is uncanny how sharp his memory still is dating back to the 1940's and 1950's.....just don't ask him to get a diet coke from the fridge downstairs as it may take him 3 tries to get it. Fifty years, no problem. Five minutes, big problem. Classic Alzheimer's, stealing his brain like a thief in the night, one plaque at a time.

Waving the white flag.

Trying to communicate WB's needs is exhausting as they change daily. We still have good days, we still have great days and some days are so 'off the wall' it is impossible to describe, so we rarely try. Totally subjective perhaps? "Read the blog", we say.

And the blog has taken on a life of its own. First friends and family followed, then others with the same white elephant in the room. Next came universities, hospitals and government agencies. From all over the world, readers are coming. This little rag has been picked up by Google and is being spread around the free Medical sites touted as 'best reads'. There are more and more invites to contribute to forums and I accept them. At this many years in, I suppose there really is a lot that I can offer.

Surrender. We are taking WB back to the beach.

But the criteria is tough. Directly on the beach (expensive), little to no stairs or elevators (condo).  So we need a house directly on the beach with no stairs at a bargain. We have to be able to see him and he has to see us or the train will leave the station. After many weeks of scratching and searching, it just fell out of the sky. Perfect location, perfect set-up and perfect price tag.

The girls (Kate, Taylor Paige, Meg) are on the prowl for the perfect tan and my stress-induced psoriasis could use the saltwater. And WB, well he could use the exercise. We cannot be sure if he will enjoy it, but I do know he will make me stop at the scuppernong patch to see his old friend, he will ask that I take the same back roads he traveled as a boy with his family, he will want me to play Kid Rock on the CD player, he will tell us again the stories about childhood summers spent on the same stretch of coastline.

Quiet please, we are not leaving until some time next week. But you cannot mention a word of this to him ~ else he'll be waiting in the passenger seat tomorrow morning with his Costa del Mar's on thinking we may leave without him.

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Gift Of Life By Tami Harmel

 

"I was a care giver for this man, he had Alzheimer's. He was a Chemical Engineer. He was a wonderful man and I will never forget him....." Tami Harmel

 Gift Of Life

No one knows the gift of life
until its seen in anothers eyes.
What's he thinking I ask myself,
from this disease that he was dealt
He meets me at the door each day
with a great big smile upon his face.
The boss is in there he says to me
and leads the way for me to see
After breakfast our day starts
with his favorite thing, doing art.
With brush in handle swirls and spins,
up, down and back again.
One line here a circle there, different
colors every where.
Oh, that is beautiful he says to me,
can we hang it with the others for all to see
Everything happens for a reason, they say
and maybe for him it was meant that way
All the riches all the gold,
could not compare what this man holds.
So what's he thinking, I ask myself
from this disease that he was dealt.
Just remember no one knows,
what today may bring or tomorrow holds
No, we don't know that gift of life
until we've looked in that man's eyes

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Growing Older

WHOA, today is weird already.

Early to rise this morning and by 9:00 am, WB was up and looking for his coffee and breakfast. I had just LOST several hundred dollars of art on my computer, so what he got was coffee, three doughnuts, his meds and a glass of water.

Relenting and arms flailing, I woke Kate for assistance. After at least an hour, she volunteered to recover the files for me. Sitting on the back porch having a glass of tea at 10:30 am, WB comes to sit with me and asks, "When did my grandmother get here?" (he has no living grandparents)

WHOA Nelly !

After a brief conversation with a friend on the phone, I entered the nook to find him seated at the table with a cup of coffee, eating another doughnut.

"NOOOOO", I said, "You've already had breakfast." To which he quickly replied back to me, "You must be crazy."

Arguing this fact would be pointless. Instead, I'll share a tidbit from a BFF Sylvia Blackerby.....



A group of 15-year-old girlfriends discussed where to meet for
dinner.  Finally, they agreed to meet at the Dairy Queen
next to the Ocean View  restaurant because they had only
$6.00 among them and Jimmy Johnson, the cute boy in Social
Studies, lived on that street.

10 years later, the group of 25-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the beer was cheap, the
restaurant offered free snacks, the band was good, there was no
cover and there were lots of cute guys.

10 years later, the group of 35-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the cosmos were
good, it was right near the gym and, if they went late enough, there
wouldn't be too many whiny little kids.

10 years later, the group of 45-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the martinis were
big and the waiters wore tight pants.

10 years later, the group of 55-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the prices were
reasonable, the wine list was good, the restaurant had
windows that opened (in case of a hot flashes), and fish is
good for cholesterol.

10 years later, the group of 65-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the lighting was good and
the restaurant had an early bird special.

10 years later, the group of 75-years-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the food was not
too spicy and the restaurant was handicapped-accessible.

10 years later, the group of 85-years-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because they had never been there
before.

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

OSAMA or OBAMA ~ I Will Fire You

I begin with reflection. 

You can Google our family, our business, our philanthropic works, etc. to find articles written that date back to 2002-2003. Articles in good times, in bad times, in strange times.

I was raised in a democratic home and at the knees of my grandmother and matriarch, Annie Sweat. I speak of this Yellow Dog Democrat often and remember her and her antics fondly. Perhaps one has done something significant in your life when they fly the American flag over the statehouse in Austin in honor of your 80th birthday.

Most of my diatribes and stories on this subject matter were lost in a BLOG virus 6 months ago and because it really served the purpose of self-therapy, I let those words go.

My childhood home, however, was a political mixed bag. The step-father, a Reagan Republican (before the days of Reagan) and my mother....well, let's just say she was a wanna-be. She wanted to be anything except what she was. I believe her initial intentions were just, but she could get in the ditch real quick. Although confused, Barbara wore her badge proudly. It was contentious, loud, obnoxious and unnecessary the fights and arguments we endured at the dinner table each night.

On the flip side, I married a Reagan Republican who too was influenced by a grandmother. She too was a professed Yellow Dog Democrat. When WB and I decided to marry, my grandmother's first question was, "He's not a Republican, is he?"

Growing up around those influences definitely made me who I am today. You will never hear me profess my political party affiliation. We give freely and expect for the American people a certain amount of assistance from the Government. Since the age of 15, I've paid employment taxes and at the age of 16 owned a home, therefore I paid property taxes. I guess that's the Democrat in me.

With WB's diagnosis and the simultaneous closing of the family business, I had to be told to file for my unemployment benefits, having never filed before. Hell, it never even occurred to me. Then, after spending nearly $1400 per month out of pocket for his medications for nearly two years (he was in the Medicare gap), I found drug companies who would help with this. The Republican in me had never relied on any assistance of any sort. It was rare that I ever received child support.

Outside of the thousands of dollars in donations to KidOne Transport in 2003 and Breast Cancer Research in 2005, then more to assist troops and the needy at Christmas, hundreds upon hundreds of hours in unpaid volunteer work, a month at the Gulf rallying against BP, I now manage a different kind of charity. 

Sometimes charity starts at home. Even when the funds are gone or in many instances there are no funds to consider, you just give of  yourself.

I believe that most all people, regardless of political party, aspire to do the right thing. I believe that a democracy is paramount, but I also believe there is a very large disconnect and that people allow politics to stand in the way of doing what it right and what is good.

We do not give to make ourselves feel better, we give to make the lives of others better.

So thankful that our family is safe and that we were spared the tragic events of last Wednesday. (more to follow) I am rejoicing and find such inspiration by those who stepped up and are making a difference each and every day.

Then on Sunday night, we see a crawler on the television reporting that President Obama will be making an announcement. He had just visited Alabama and viewed the devastation, therefore my first simpleton thought was an announcement of his trip, his response, his plan. Not so.

GOOD NEWS! Osama is dead. The terrorist is gone! Music to our ears. Relief. I am feeling an uptick in my mood and have renewed prospects for our country, our economy, our future.

Unfortunately, it only took less than 24 hours for me to get madder than hell.

I do not care if Obama is a Democrat. I do not care if he or the CIA, or the Navy Seals did him in. I do not give two shakes if he was buried, burned or dropped at sea. I do not care to  see evidence of his dead body nor hear opinions on this nor posts about it. What I do care about is that it's done.

That people will give 5 minutes of their time to this debate instead of giving 5 minutes to a disaster relief astounds me. And, perhaps there are some who are giving 5 minutes to both. Which means, they could be giving 10 minutes to the latter.

If you're a real shaker and mover, you will recognize that for most part politics is local.

My interests lie in finding and promoting those who do it for the right reasons. And that certainly includes politicians. You are my candidate if I believe you are the person for the job and if  the candidate has the capacity to lead globally. Personally, everyone deserves a pat on the back for a job well done,  an act of random kindness, giving in lieu of receiving.

You still won't find me bragging about how I voted, but you may finally see me drawing a line in the sand. As Americans, we get to make certain choices and any reader or follower gets my permission today to delete my ramblings from your feed.

But please be aware, when I see the next mention of OBAMA or OSAMA on my feed,  they will be deleted from mine.

Who really has time for all that nonsense? Just askin'

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Follow Me There.....

Roughly 10 days since Susie and Meghan left on their trek back to Boston, but it seems to me like it has been at least a month. They were in town for nearly a week and their visits normally include more family coming by to hang out, visit, play games, watch movies, grill out or whatever strikes a fancy. All but one of her children spent time here that week (Dalt and Gracie came in from Georgia and Maddie stopped in a couple of times). 

Lately, I have worked myself into a different attitude about it. I no longer make plans or try to work around anybody's schedule. We are here, company is always welcome, there is always something to eat and drink. Ever reluctant to call for reinforcements with an opinion that if you don't recognize there is a big elephant in the room sitting on my chest, so be it. WHOA, that was a powerful statement. Isn't that really what it is? If an elephant is sitting on your chest, you may feel trapped, anxious, short of breath, tired from the struggle of getting loose, abandoned, helpless, fear of the outcome ~

Digressing, Susie's first day with WB was a trip to the barber shop and grocery store to stock up on Meghan's rubbish requirements and ice-cream for her Big Daddy. Not a full-on disaster, but enough to cause a crying jag for Susie in the hall bath upon their return. I was pretty sure all along Susie was connecting with me on the level of her dad's impairment, however, now I know she understands in just a few short hours what we go through 24 hours a day.

Additionally, she has offered to come in and stay with WB the week I had planned to travel to Costa Rica on vacation. A solo trip, with perhaps a girlfriend or two, I had great plans to lolly gag around not worrying about much of anything but have still been unable to pull the trigger on the ticket purchase. Not that it won't be grand, as I will be pampered by great friends. Its the fallout I fear.

Getting WB motivated to do much of anything is a trying proposition. He so needs the exercise but is essentially helpless. Just last week, I sent him outside to rake leaves from the flower beds. Walking out to check on him in less than an hour, he is sprawled out on the lawn, on his back, taking a nap. All the while, Michelle (less than two weeks post-surgery on her foot) was balancing herself with a crutch and a rake trying to complete the task for him. Classic.

And, as much as I try and monitor the phone activity, he always manages to sneak around and find his cell phone. Too much news from old buddies or his inability to communicate creates additional stress. So, when he called Spud on Monday afternoon, he learned that Peggy Brantley had passed away and within minutes he could not remember when relating the news to me who's funeral Spud was headed to.

Downhill from there, he woke this morning not knowing where he was. Everybody does this at some time and one may not find it unusual, except that this morning he was lost for about 15 minutes. Even after seeing me and me talking to him, he was unsteady. Even after admitting to me he knew where he was, I am confident he was only telling me that because he recognized the hysteria in my voice.

From there he cried. Sobbed, actually. Until about 11:00 am when by the grace of God, an old friend came by to visit. A few crying episodes during the visit, but nothing since. Fingers crossed that this was just a fluke and praying that this is not the beginning of what we have feared the most.

Why does he cry? Because he still has enough capacity to understand he is losing his abilities and  it is crushing him. He has little understanding at this point that it is going to get worse and no understanding whatsoever of where this disease it going to take him. Long gone are his abilities to understand its effect/affect on those of us on standby. Helpless.

I am his person and I have touted since the beginning that this is mine to navigate until he no longer knows who I am. For a short time this morning, he knew nothing. Thinking of saddling up for another appointment with Dr. Counce and simultaneously pondering ~ there is probably not much in her arsenal to remedy this.

If you subscribe to this diatribe from afar and have experience with this stage of Alzheimer's, we welcome your advise and comments. If you know WB and are a close friend, relative, son, daughter or member of his extended family, this is your smoke signal. Today, I have few regrets with the level of care I demand that he receive. Rattled, yes. But my conscious is clean.

As a side note, I am posting the theme song from Palin's Alaska. I am not a huge fan, but a fan of Third Day and their inspirational music. The link takes you to a YouTube URL to hear. You can mute my play list below to eliminate any conflict. Enjoy ~ JustBrantley

FOLLOW ME THERE 

Song Lyrics

You need a place where you can find some shelter
Follow me there, follow me there
You want a hand to hold, someone to help you
Follow me there, come on, follow me there

Where love, like a river, flows
Peace like you’ve never known
And joy never ending lives
A place where faith can find
Hope that will never die
Follow me there, come on, follow me there

You need a place to be your sanctuary
Follow me there, come on, follow me there
Where you can lay down all those burdens you carry
Follow me there, come on, follow me there

Where the lost can find salvation
And the lonely finds a friend
Where the sinner finds forgiveness
Won’t you follow me there
Won’t you follow me there.

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Just random stuff....

Its been too long since my last post. Busy with things around the house, busy studying CSS (Cascading Style Sheets) and busy enough to have things pushing through to the next week. Matter of fact, I have full days planned all the way into March.

I received a call last evening with an invitation to get out last night and normally would not have considered it. Last minute plans around here really throw a kink in the 'mojo jojo' but with both Michelle and Kate here, I went for it. Slept through the night and late into the morning and that very rarely happens.

Still trying to always take Wednesday afternoons for myself, we refer to those as Red Wine Wednesdays, White Wine Wednesdays, Margarita Wednesdays and so on. I am not only blessed to have great girlfriends, but several factions of great gals who are always working around my schedule to get together.

So many of my BFFs are going through terrible times with either/or children, grandchildren, spousal conflict, aging parents, financial woes ~ it is heartbreaking. But to have good friends, you must be a good friend and I am grateful knowing they feel comfortable with my confidence and advise.

Donald (the duck) is already laying with one egg in the Duck condo Hunter built. Last year we hatched eggs on the kitchen table so I am delighted our two-year old Pekins (Donald, Whitehead and Aflac) are nesting and getting along well at the pond. They still waddle down the street and up to the house when they see Kate driving into the subdivision on Friday afternoons.  She taunts them as she rolls down her window when passing the pond entrance with their call, "Duck, Duck!"

With warmer weather and sunnier days, I will continue encouraging WB to get outside. Remember, he will not do this on his own and lately he has to be prompted to do most everything except eat. Subtle reminders to shave, shower, take a walk, take the trash out and then a browbeating to get the car washed or some leaves blown.

About the car: There was a coupon last week at Anthony's Car Wash for a $12 complete wash and clean of the inside. Great deal. Instead, I purchased $15 in car washing supplies to give WB something to do for 2 days. Supplies that should have lasted for at least several washings are probably completely exhausted and the window glass is scary to look through. This is just what we do.

Michelle had a re-do of a foot surgery from last year on Thursday and is pretty much couch-ridden with instruction for no weight on it for at least 3 weeks. She has worn a boot for nearly a year to work and endures constant pain. I am hopeful that this surgery works for her and intend to look further into why the first doctor's surgery was a complete failure.

Susie and Meghan are coming in this week to visit and are staying for nearly a week for their Spring Break with Kate insisting on home-cooked something or another. Most of the kids and grandies gather here when Susie comes and we are very much about eating well when together. I am not sure if I am the culprit behind that pastime or not.

So, I suppose the report on WB is that we are holding. For the person last week who asked if he was getting any better....NO, he will never get any better. Holding then, is a good report. Wade told me just last week that a distant friend inquired into WB's condition and he responded with, "Not good."

How proud I am of him and to have our kids involved enough to understand what is happening to their father, what the fallout is and what our future is beginning to look like.

Until next time,

Just Brantley

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Life ~ Take Time To Dance In The Rain

A dear friend of mine shared this story with me
and I wanted to share it with my friends and loved ones. 

It was a busy morning, about 8:30, when an elderly gentleman in his 80's arrived to have stitches removed from his thumb. He said he was in a hurry as he had an appointment at 9:00 am.

I took his vital signs and had him take a seat, knowing it would be over an hour before someone would be able to see him.

I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound.  On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.

While taking care of his wound, I asked him if he had another doctor's appointment this morning, as he was in such a hurry.

The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife.  I inquired as to her health.

He told me that she had been there for a while and that she was a victim of Alzheimer's Disease.

As we talked, I asked if she would be upset if he was a bit late.

He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him, 'And you still go every morning, even though she doesn't know who you are?'

He smiled as he patted my hand and said,

             'She doesn't know me, but I still know who she is.'

I had to hold back tears as he left, I had goose bumps on my arm, and thought,

That is the kind of love I want in my life.

True love is neither physical, nor romantic.

True love is an acceptance of all that is, has been, will be, and will not be.

The happiest people don't necessarily have the best of everything;

they just make the best of everything they have.

           'Life isn't about how to survive the storm, But how to dance in the rain.'

We are all getting Older

Tomorrow may be our turn.

GOD BLESS!

Take every opportunity to tell someone you love them ....while they still know who you are.

Thanks Deb ~

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Happy 65th Birthday Willie Bill

WB turns 65

WB is sitting patiently, waiting. Oh wait, that was a stretch....actually he has been pacing for over an hour. No. 1 son, Wade, has plans to take him to our local Bass Pro Shop this afternoon. The weather is nasty, but he has been in all week recovering from the little surgery on his face.

About the face. It was from the sun and doc says its gone. Still bandaged, he looks like a wooley-booger as the better way to handle this is to just not shave. We have real issues with shaving, keeping an electric shaver running is impossible and he's simply lost touch with touch. I normally try and shave his face, but it may not always happen on a daily basis.

So he is pacing and waiting. Today is his 65th birthday. Born in Birmingham on February 4, 1946 to J.W. and Helen Brantley. He was their first child of five and has survived both of his parents and one brother, who he misses in the worst way.

I am younger than WB and was born just a few months before he graduated from high school. His older children and I are close enough in age to have just been good friends, but the way I see it, they are all mine, yours, ours and theirs. I cannot stand the thought of any of the grandies calling me Rhonda. Approaching 20 years of marriage makes me a "Honey".

Digressing, the first news this morning for WB was "Happy Birthday" to which he asked, "uh-oh, how old am I?"

The early birthday fish tank is as clean and clear as a whistle. Only 3 fish have expired and the rest seem to be thriving. Bill's No. 1 Daughter, Susie, sent a gift card for fish, supplies and other aquarium necessities and No. 4 daughter, Katie Bug, will be taking him to buy fish some time this weekend. Michelle is baking his favorite strawberry cake and we will have steaks, salad, grits and au jus for dinner.

(To clear up the numbers on the kids ~ they are numbered in birth order, regardless of who birthed them)

To be brutally honest, I never imagined WB would still be at home with us this long post-diagnosis. Ditto for his doctors, all of them. Chock this up to excellent home care and quality of life. He may not believe he is experiencing the quality of life he expects, but it is something we all take very seriously.

And, except for him looking for his keys all day yesterday and washing his hair this morning with conditioner instead of shampoo, the extra dose of Seroquel has once again made a huge impact. I guess the program will be to add and add as things progress to stabilize the behavior. Dr Counce did say she could treat anything and she has certainly made a believer out of me.

With Wade coming, Michelle leaving for work and Kate traveling back from T-Town, I should get at  least 3-4 hours of alone time. Rest, not so much. To the war room I go.

 

War Room

Just Brantley


My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Still mesmerized.....

Houston, we may have a problem....

Newsflash: I finally killed a fish.

Yep, casualty number 1.

It was a newly purchased Plecostomus (algae eater). Although I am now convinced it wasn't anything we did, perhaps it was simply because there was not enough algae in the tank already. Nonetheless, he has been scooped out, bagged and is sitting in the freezer awaiting his return to Petco as they honor a 30 day guarantee. Kate tried to convince me to move him to the outside freezer to keep Michelle from screaming out loud when she went to get ice last night, but hey ~ what's not to like about a little excitement every now and again.

The 36 gallon aquarium is an absolute hit. When visiting Dr. Counce last week, I suggested to her that she mention this to other families of Alzheimer patients. It soothes WB in the most positive way as it puts him to sleep, puts him back to sleep and so far has kept him from wandering at night. Providing just enough noise, a little water noise and now Moze, the rescue cat, is keeping him company. They are mesmerized buddies.

Back to last week's appointment, Dr. Counce has raised the Seroquel to another 5 milligrams twice per day. And, after mentioning my concerns with the high levels of zinc over many years, ordered a heavy metals test for both urine and blood. This is not a hard test, just a capturing of urine at home for 24 hours (on ice) and delivering the following morning to take blood. The instructions said refrigerate so I stored in the water closet in a styrofoam cooler. 

Amy came for her visit Monday morning and volunteered to deliver the specimen and have his blood drawn at the lab. They lunched at the famous Fran's in Pelham where they are always excited to see WB. So the story goes, Mayor Murphy recommended that Bill come to walk the tract at the Pelham Park a couple of times a week ~ NOT. Amy had to remind everybody that the only way to get Bill into a fast walk would be to chase him with a gun.

What he does not know and will find out soon enough, is that when the cold weather breaks, he will be walking with me. May have to up the Seroquel again, as he will be convinced it is punishment.

If you are wondering about Seroquel dosage, WB still takes less than most people we have talked to that have this as part of their prescription routine. I asked Dr. Counce about newAlzheimer's meds and she has me convinced that he is getting the best there is (Namenda and Excelon) and advised that she felt they were continuing the lesson the sharp declines.

Dermatologist test results came back as well and we will be taking WB for surgery on his face next Tuesday morning. Only under local anesthesia, but they have still advised a long day at their office.

Do not have pictures to post from WB's outing on Saturday with Wade, Aiden, Austin and Bill Strickland to the boat show, but he had a fabulous time and was worn out when he returned. An avid freshwater angler, bass club member and boat owner, I was convinced there may be repercussions ~ but none so far. 

And, as discouraged as he has been about not hunting this year, he finally relented, "You know, this has been the only year I can ever remember not hunting. But I just don't think I feel up to it". His way of admitting it or his way of excusing it remains a mystery. Hunter's 8-pt took care of the venison for the freezer and we will look at the pics from the camera at the backyard deer feeder this weekend.

Susie sent WB's birthday present early and Michelle will be taking him out today to find a few glo-fish in neon green.

Will keep all posted on the heavy metals test and the cancer surgery while trying to keep Moze out of the fish tank.

JustBrantley

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

A Fish Tank For The Fisherman

Had I known that he liked them, this would have been settled much sooner than now. It was not until our stay with Mike and Joni that the issue came to a head.

They had recently set up a nice fresh water aquarium in their den and it was alive and sparkling when we arrived. I thoroughly enjoyed watching the fish and it was truly relaxing, however WB was mesmerized! 

Just love that word.

Sometimes I find myself mesmerized by certain things, but not too often. Mostly I think I have just about seen it all. For WB, we need him to be mesmerized with something. So many idle hours, so many things he wants to do and cannot, so many times I can tell his anxiety is exacerbated with boredom.

He mentioned many times how he liked their aquarium. Then he said, "I want one of those". BINGO

When he says he wants to go hunting, wants to go fishing, wants to drive, wants to buy a boat ~ it all results in the big fat NO. Zip, zero, nothing, nada. How discouraging that must be for him.

But the aquarium, now that is something I felt we could do something about and rather soon. The plan was for the kids and I to go in together and make it happen for his birthday in February, but he would not let it rest. Moving furniture around to make space for him to either enjoy by sitting in his chair or lying in bed during a cleaning frenzy last week only made it worse.

Of course I must research it a tad only to find that an aquarium is recommended for Alzheimer's patients as it calms aggressive behavior, eliminates stress, holds their attention span and helps with eating patterns.

Once again, that is not in any books I've found on daily living, but I did find these:

http://www.articlesnatch.com/Article/Freshwater-Aquariums/1023722

http://www.sciencedaily.com/releases/1999/07/990716071547.htm

And excuse me, but where with this venture was there a manual that said you will most likely spend money you did not plan on when setting it up. Kit, tank, hood, light, filter, pump, hose, gravel, background, decorations, chemicals, salt, thermometer, heater, water test strips, food.....forget the fish, that is the least of it. Katie Bug and I have definitely exhausted our allowance this month.

Was it worth it? Heck yea. Would I do it again? Absolutely. We have hit the ball out of the park with this new treat.

It took Kate, Michelle, Hunter and I to get it together and thank goodness Hunter had some experience. Two great friends offered me their 55-gallon tanks, but am simply not that brave nor ready to take on that much responsibility.

Today, we have 6 new very small and very cheap Tetras currently enjoying their new home as I patiently wait on them to die. WB, on the other hand, is asking me when the bigger fish are  coming. I've done the math on the total gallons versus fish count for small community fish for beginners and assumed that is what our program would be.

That said, I assumed wrong. So I then start thinking perhaps 4-5 Angel Fish or Barb on the semi-aggressive side. Wrong again, WB's talking BASS.

JustBrantley

The party's over, literally.....

Home and settled back in, we are going to Tuscaloosa today to finish up moving Kate into her new dorm room with her new roommate. What a relief this is and a blessing that the new roommate is already a friend of hers. 

Sad but true, that if you are a smart, cute and sweet young lady ~ well, unfortunately that creates a problem for you. She will learn, however, not to judge a book by its cover and other great life lessons along the way. Most importantly, I believe this has taught her how take the issue to the woodshed. 

We were so proud when we received her first semester grades and WB has them printed and sitting by his bedside table. Could not be more pleased with Kate's study habits and the goals she has set for herself. However, we are not pleased when the drama department descends upon her living quarters thereby potentially impeding her progress. There was one specific thing we agreed upon when she left to live on campus ~ education first. 

When she confided in her older siblings, they too advised her to, "take no prisoners". Family trait, I suppose. We will do anything for anybody within our means. We take it, take it, and take it some more until the goozle is full. Then, when it does not improve, we cut it out completely. We do not solicit confrontation, so that obviously translates to some as "you can treat me  in any matter you like." Unfortunately, when we have had enough it is 'Katie bar the door' and sometimes downright scary.

So, improvements in that department for sure. A step in the right direction for Kate as this New Year brings a new class schedule, a positive environment, yoga, a "new do" and a whole plethora of new things.

The Alamo

Hunter and Kate at The Alamo in San Antonio

Typical Fredricksburg Landscape

Downtown Fredricksburg

Luckenbach, TX Waylon, Willie and The Boys (Hunter, Kate and Joni)

Riverwalk, San Antonio

I can tell that being on holiday for a month greatly energized her. She, like all of us, enjoys  traveling; by train, plane and/or automobile. Its something we have done all of her life and I remember her in diapers for her first cruise of the southern Caribbean. Even though our traveling roadshow this year took us through familiar territory, we managed to incorporate new things to make it interesting.

Thinking about The Alamo excursion makes me want to gather up the ingredients today for a Texas favorite, King Ranch Chicken ~

1 (4 1/2- to 5-lb. ) whole chicken 2 1/2 to 3 tsp. salt 2 tablespoons butter 1 medium onion, chopped 1 medium-size green bell pepper, chopped 1 garlic clove, pressed 1 can cream of mushroom soup

1 can cream of chicken soup
2 cans Rotel
1 teaspoon ground cumin
1 teaspoon chili powder
3 cups grated sharp Cheddar cheese (Monterrey Jack)
12 (6-inch) fajita-size corn tortillas, cut into 1/2-inch strips

1. If applicable, remove giblets from chicken, and reserve for another use. Rinse chicken.

2. Boil chicken until done. Remove and reserve 3/4 cup cooking liquid. Strain any remaining cooking liquid, and reserve for another use.

3. Preheat oven to 350°. Melt butter in a large skillet over medium-high heat. Add onion, and sauté 6 to 7 minutes or until tender. Add bell pepper and garlic, and sauté 3 to 4 minutes. Stir in reserved 3/4 cup cooking liquid, cream of mushroom soup, and next 5 ingredients. Cook, stirring occasionally, 8 minutes.

4. Skin and bone chicken; shred meat into bite-size pieces. Layer half of chicken in a lightly greased 13- x 9-inch baking dish. Top with half of soup mixture and 1 cup Cheddar cheese. Cover with half of corn tortilla strips. Repeat layers once. Top with remaining 1 cup cheese.

5. Bake at 350° for 55 minutes to 1 hour or until bubbly. Let stand 10 minutes before serving.

Enjoy!

Poligrip and Fixodent Linked to Alzheimer's

When poking around about early onset Alzheimer's Dementia, I was reminded about something I read some three years ago. It wasn't until today that we learned that both Poligrip and Fixodent had high levels of Zinc which penetrated the soft tissue of the gum, leading to all sorts of unexplained health issues including neuropathy, tingling in hands and feet, weakness in lower extremities, misdiagnosed MS, MD, Parkinson's Disease and a host of other life threatening ailments.

Well now, WB has worn dentures since he was in his twenties that required the above to keep them in place. Symptoms of neuropathy are weakness in the lower extremities and problems with ankle pain (he's had ankle reconstruction) problems with numbness, tingling and pain in the arms (he's had nerve blocks and complains daily with this) decline in motor function (check), confusion (check), abnoral high blood pressure (check, check, check) allergies (check) masked Alzheimer's and Parkinson's?

WHOA. Could all of these symptoms for the past 30 plus years been in relationship to Zinc poisoning from using teeth glue in mass quantity for years and years and years?

On February 18, 2010 Glaxo Smith Kline announced that it plans to stop selling a number of Poligrip denture cream products and also plans to remove the ingredient Zinc from its existing denture cream product line. The announcement was reported by the Associated Press amid a growing number of lawsuits claiming that Zinc caused neurological damage and blood problems in denture cream users.

I intend to investigate this more and report my findings AFTER I contact our attorney about the lawsuits being filed against Glaxo Smith Kline and Proctor and Gamble. If you have any questions beforehand, let me know. Would be glad to share the info.

From an excerpt in WebMd:

“Zinc had previously been shown to contribute to the formation of plaques in the brains of patients with Alzheimer’s disease, so it was logical for us to test the idea that zinc might also contribute to the formation of plaque-like drusen in the eye as well. AMD can be considered as the Alzheimer’s disease of the eye, in that both involve the build-up of proteins and metals like zinc and copper into microscopic clumps.

We are now syndicated!

WHOA! Our little blog is now syndicated ~ guess I better step up my game.


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This truly inspires me.

Thanks again!