As Published in PRACTICAL ALZHEIMER'S

You can find the original article here....

Written by Rhonda Brantley

 

You’ve heard about Alzheimer’s and dementia for years, but never suspected it would creep into your own home. Much like cancer, a house fire or losing your life savings, we just don’t anticipate bad things happening to us. Those things happen to other people.

The truth is, Alzheimer’s happens and young-onset Alzheimer’s is becoming a more common diagnosis. It was late 2007 when my husband was diagnosed at the age of 61. He could have been diagnosed at 59. Actually, he should have been diagnosed when he was 56.

When you have to hire someone to look after your husband while he continues to run the family business, you know. You’ve raised seven children together and the baby is just nine years old. You have a multi-million dollar real estate business, with land holdings and construction in progress. To off-handedly suggest your suspicions to the man in charge would not be safe.

But he knew. And he hid it well. For years he blamed, masked, argued and fought while managing a perfectly-orchestrated charade of cover-ups. Unable to manage the credit card reader to buy gas or to read and understand contracts. Lost keys, lost funds, lost friends. But when he lost his way while picking the baby up from school one breezy fall day, the gig was up. I could no longer cash the checks he was writing.

I recall now a series of events that led up to what I believe was an accurate diagnosis of mixed dementia. Take his multiple concussions, numerous surgeries under general anesthesia and a long history of hypertension. Add a near death accident resulting in Post-Traumatic Stress Disorder, a stressful career trembling under the weight of a crumbling economy and, BAM, the perfect storm. The storm that rocked the foundation of our family, our business, our lives.

We do lean on Alzheimer’s for treatment and services and most dementias at that time were being treated the same. First Aricept, then add the Namenda. File for your Social Security Disability, get your affairs in order, review your will, check your deeds, go home and wait it out. That’s all you get. Because with Alzheimer’s, that’s all they’ve got.

After trying for years to get a diagnosis, the formality of hearing it came as a relief. Confirmation that someone else knew meant that I could either hide it, run from it or attack it.

Within just a few short days the business was gone, the home and assets were for sale  and we had made the front page of our local newspaper. There was little time to think of what to do next, with reporters calling for interviews, extended family coming out of the woodwork and employees scrambling for cover. Because he ‘seemed’ okay to those who were not around him every day, his condition created its own set of issues. Having a reason to pack up the circus gave me a few moments of peace until I learned he was simultaneously continuing to reassure everyone all was well. That he was fine.

Therein lies the crime when diagnosed so young, with a wife in her early 40s and young children at home to influence and care for. Suddenly, Dad becomes the kid. Early on, we noticed his reasoning skills shattered and a once-shrewd negotiator became a pushover. An outdoorsman who couldn’t be trusted with his own gun, a fisherman who couldn’t navigate his boat in familiar waters, a man stripped of his credit cards and cash to keep him from giving it all away as he could no longer make change.

There were no outreach programs for teens and little to no support groups for young spouses, so I honed my focus. Searching for clinical trials, new therapies and answers, I continued to dole out our life savings for medications not covered by insurance and attorneys to keep the wolves at bay. Social Security Disability Income was approved in under 60 days, but we were in the GAP and earning just $1.74 per month too much to knock us out of any other assistance.

From the day of my husband’s diagnosis, they gave him three years at home. I read every book and magazine available on the subject. My goal from the onset was to care for him at home with the respect, love and compassion that he had always showered upon us: an excellent husband and father, abundant provider, loving and kind. I created a game plan and became the quarterback. Our children blocked and ran the plays. Adamant we would make those the best three years of our lives, we were blessed with nearly five.

With the passing of each month, I convinced myself it could not get any worse. However, each and every week it did. To see the love of your life fall into a daily routine of such insignificance is heart-wrenching, while together we witnessed a once robust and physical powerhouse lose all desire to live. On his darkest days, he would apologize to me for having to assist with his bathing, shaving and dressing. He was humble and grateful, but sad. How must it feel to know you are losing your mind?

Without a good map, I chartered our course with a group of excellent doctors, road trips when we could afford the gas and good food. He came to expect it and I continued to demand it as this essentially became a new way of life for all of us. Our children are better men and women today having navigated through it.

Eventually turning to a journal and then to a blog, I expelled my rawest emotions with both candor and fear. Here and there, peppering the insanity of our days with humor and angst allowed me to cry through it for another dose. It was my plight and my duty and so convinced that it would go on forever and ever, I nearly missed the ending.

My precious husband passed away on Easter Sunday 2012, on the heels of a wonderful day at home. A traditional home-cooked feast, he was giddy all day having mama in the kitchen and our now college-bound baby giving him more attention than ever. Except for a bout of indigestion, there was no pain for him when the widow-maker came to visit.

With an aging population, the tightening of research funds, limited nursing-home beds for dementia patients and the ongoing threat to any assistance for the elderly and sick, we find ourselves at a real crossroads. Not everyone who succumbs to Alzheimer’s will have the support and care my husband received — and most will not know how to find it. Caring for someone with dementia is not a walk in the park. But with knowledge, the right mindset, lots of love, and a full portion of grace, it can happen.

It was the most important job of my life.

Diagnosis: Alzheimer's - Healthline's Top 25 Blogs of 2013

When a spouse is diagnosed with early onset Alzheimer’s, most people want to turn and run. Not Rhonda Brantley. This brave woman was caregiver to her husband for the final five years of his life. Brantley turned her experience into Diagnosis: Alzheimer’s to help spouses and caregivers going through the same heart-wrenching challenge.

Part documentary of Billy Ray’s final years and part informational resource, Diagnosis: Alzheimer’s is the story of lives fractured by Alzheimer’s, with the highs and lows wrapped into one beautiful and bittersweet tale from start to finish.

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.

A Shitty Little Christmas

It was a DISASTER. I think any and everything I tried to do to overcome the dreaded first Christmas without WB resulted in a train wreck. With time to reflect and a several thousand mile roadtrip, it was anxiety and fear of the unknown driving my depression therefore perhaps exacerbating it for others. Even the most precious and well-intentioned messages from friends and family had me ramped up for the big explosion and I fully intended to thwart it. Mistake.

While trying so hard to create a new set of memories, I stepped right of into a pile of manure. Reminded me just now of the Renee Zellweger character in the movie Cold Mountain. "Ruby Tewes, you are a C-A-T-A-S-T-R-O-P-H-E!"

Watching OPRAH on OWN this morning and her interview with Eckhart Tolle was eye opening. Eckhart Tolle is a German-born Canadian resident, best known as the author of the The Power of Now and A New Earth, which were written in English. In 2011, he was listed by the Watkins Review as the most spiritually influential person in the world.

Then, a scan of Eckhart's website confirmed for me that I should reading his books. Front and center, he cites, "The realm of consciousness is much vaster than thought can grasp. When you no longer believe everything you think, you step out of thought and see clearly that the thinker is not who you are."

I rattled Kate out of bed earlier to share. Sleepy and now sure she was not so amused with my ah-ha moment, I am now thoroughly convinced she didn't process it quite the same. That said, I moved on to a discussion about dinner. Meatloaf, it is.

Living in the past is weighing me down. Anxious about the future is weighing me down. I've got to find a way to get in to the HERE and NOW. That was Eckhart's advise and it's definitly worth a shot. Obvious that I cannot change how I got here or life events before today, there is simply nothing that can be done to change them. That memories are just that. Memories. Just another reminder of what I've said many times before, my memories are personally mine as everyone else has their own. My feelings are mine, and mine alone.

Really need to start practicing what I preach. Then, visiting a Blog that I follow, The Christian Working Woman, I found this post  "Be still and know that I am God." (Psalm 46:10). The fear in me has been so present for so long and this has really resulted in a real conflict for my children and I.

I do not fear any man or woman. I am not fearful of any legal issue, court battle, or death. I have never been afraid of anything that I can remember except a serpant of any kind. However, worrying about what comes next in our lives has substantially paralized me and I speak to this often. Give me anything and tradtion is, I can typically handle it. Therefore, this fear is in my mind. It's not physical, it's embedded in my soul.

For months and in an attempt to keep the FAITH and a constant search for any system, methodology or scripture - it just came around this morning at first cup and the landing on the right TV station. I cannot even accept my 'religious beliefs' without tapping into my own spiritual self.

How long have I co-mingled religion and spirituality? For as long as I can remember we've heard people say, "God spoke to me." And, for as long as I can remember, I've yearned for that. Oh how I've pondered, can they hear God speaking to them and I cannot?  

Coveting their experiences present so many questions for me; What does God's voice sound like? Is it gentle? It is strong? Does God have an accent? Will he speak to me in a way that I may understand? Am I too shut off with anger or guilt that he may not present himself at all? Is it because I like wine and I say 'SHIT' regularily? What is it? Why can I not hear God speak?

This notion may change within a short while, but is the goal to get to that place within yourself, a quiet and still place where you can mediate on God's word? Is that how God speaks to me/us?

Fortunately (or unfortunately) these issues are documented in many of my postings. Taking the time to look back on my thoughts and feelings of the past 9 months, one can easily see a vast array of emotions and stages of grief. From no grieving to angry grieving, to trying to quash the grief and then trying to undermine grief by completely ignoring and rerouting our traditional Christmas. At this stage in the process, one may typically suggest a doctor or stronger medication. My family, friends and anyone following this has got to be thinking, "This woman is CRAZY"!!!

True that. Still crazy with grief. Crazy with love for our children, grandchildren and extended family. Crazy still with a sense of responsibility for those less fortunate or needing assistance. Crazy hungry for an end to the pain yet crazy enough to keep it close. It's the memory.

Thinking that next year we will remember our SHITTY LITTLE CHRISTMAS, I will also remember that the friends and family who were reaching out to me knew that no matter how hard I tried to disguise it, disaster was iminent. Just as we will remember that our sabatical to Texas during the holiday was the first in over 20 years absent the big guy taking up all the room in the car. 

Be still.  

I will also remember that my girls and I had a delightful Christmas Eve sharing gifts of need and then a restful Christmas Day with great food, a fire in the fireplace and endless movies. As for today, I'm scribbling and scratching in an attempt to keep this in the here and now because it's all so heavy. It's just another memory. Be still, Rhonda. Keep reading. Keep studying. Keep praying. Keep the faith.  

Just be still.

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

Infographic on Alzheimer's Disease

Sent to us by ActivCare. Thanks!

Does Caregiver Mentality Ever Change?

"You've been a caregiver all your life and that has got to change!" This was the text message I received from the youngest daughter last week.

On the heels of a post made about taking care of myself first as it will be impossible to take care of anybody or anything if I cannot find a balance AND understanding now more than ever that when you have tended to the needy with great zeal the result may be that you've created the needy....

I spoke about worry and the desire to be free from it. Faith, and how to attain it. Perhaps a message to myself to appreciate the endowment of my new freedom or just a good old fashioned pep talk. After reading so many great articles on caretaker experiences over the years, it is abundantly clear to me that if the caregiver is not taken care of, the caregiver cannot perform the best care.

So how is that going for me?

Insomuch as it sounds like a great plan, the crux lies in what transpires when in the throws of giving the care. There is no time or opportunity to seek therapy, attend group therapy, have your hair and nails done. There is no offensive position on the field.  

My caregiving experiences did not begin with Bill's illness, rather it began some 44 years ago when my brother was born. With so much time in the seat, it makes me wonder how one sheds the thick second skin after so many years and how hard will I search for others to care for?

A recent article from Gary LeBlanc noted, "Once the human heart takes on the difficult but worthy task (and identity) of becoming a caregiver, it will remain a caregiver."

If the caregiving experience over my lifetime now remands me to this identity and life mission, I must be better prepared. Should this plight be embedded so deep in my psyche, there may be little else to do but find some way to manage it.

I will never forget Bill's cousin whispering in my ear after the graveside service, "You are going to experience the most unique emotions; grief and relief."

He was right. Grieving for years at each loss in the steps of digression and relief for the end of his suffering. But, I found fulfillment in my abilities to make his life better. Just as it fulfills me to satisfy the request for a special meal or to plan an event - it completes me.

Saying out loud everyday, "I shall not be a caregiver, I will not be a caregiver, I do not want to be a caregiver" doesn't seem to be working. Upon reflection, more specific prayers are needed. Perhaps it's
that I know that I cannot be a significant and adequate caregiver at this time. That my plans to take care of myself first and worry less for others is unrealistic, but for a spell is in order. Just a vacation from the routine, as it never occurred to me until Kate said it...."throwing the caregiver mantra and way of life out the window may be impossible for me to do."


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

Scotty McCreery - Christmas in Heaven (Lyrics)