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.

The Caregiver - Worry and Prosperity

This world is crazy. Young people shooting babies, people shooting people in hospitals, low morals, drugs, theft - and this posting will surely be out of sequence, out of whack and bounce from thought to thought. I am flighty that way and my processes reflect it. It's the best that I can do today...

I'm a worry wart. Supposing I get that straight from my grandmother, she worried and worried and worried. She made her self sick worrying. My Uncle always said, "Some people just can't handle prosperity." WOW, I'm finally getting it.

It's my road and mine alone...

I've really found it hard to come back to this place. A place where I found refuge so many times before. Perhaps like a sedative, it kept me sane and thwarted the 'come aparts'. If I could just get here, get it written down to something I could see, the feelings of helplessness seemed manageable.

Was I wrong to think that the need to seek shelter here would end with WB's passing?

How can it be that it's only been two months when it seems a life time ago that I heard his voice. His last audible and most frequent words and phrases, "Honey, Katie, I love you, thank-you, I'm so sorry" while the same carton of Blue Bell ice cream still sits in the freezer. Not sure I will ever feel the same about ice cream.

I pass through his closet that adjoins the laundry room many times a day with not much change except the ever rotating section of XXL Guy Harvey t-shirts that I wear to sleep in each night.

"Keeping myself busy with things to do, does not keep me from thinking of you."

Knowing that if I cry, the others will. If I go to bed and put the covers over my head, the others will. If I shut myself in and appear sad and beaten, the others will. If you see me and I appear happy, please know that it's my duty. When you've been required to be strong for so long - you may be broken, but you don't know it.

Gracious and thankful to have so many invitations for dinner, a movie, an out of town jaunt. I am not comfortable with much of that. If you're around too many people too often, the subject comes up. How could it not? I was him and he was me.

But, I am getting on with this quiet space. It makes it easy to talk with him and ask him questions. Tell him about our day. Let him know we are going to be okay. And, only wave to him on the days I do not actually drive through the cemetery entrance (just up the road).

Where I find comfort here, our baby has not. I see him here in every chair, curled up in the bed, the rubs on the door casing where he scratched his back. Believing this will change, I resisted the opportunities to evacuate and opted to stay with what we knew. Does the bear go back to the same cave? I am trusting and praying she will begin to appreciate the opportunity with less anxiety and find home was a place that was built for her.

I knew that life would go on, but like so many other things - until you live this, it's hard to describe. I thought I knew what it was like for people to lose their job, until we shut the business down and I didn't have anywhere to go to work. I thought I knew how the constant care for an Alzheimer's patient would be, I knew the inevitable would come, but foolishly thought I knew how I would handle him not being here.

No matter how much you hear, you don't hear it. And, you'll never pick up a book to read on loss until you've lost it. We are all so uniquely different that my advise today is that you just jump on the train, girdle yourself up for a rough passage and be prepared to ride it out.

Thanks, Dorothy Sander, for the inspiration. http://www.huffingtonpost.com/dorothy-sander/the-caregivers-silent-bur_b_1570584.html


My name is Rhonda Brantley and my husband, Billy Ray Brantley suffered from Early Onset Alzheimer's Dementia. We lost him on Easter Sunday, 2012. This is the best shot we have at documenting daily living.

Navigating Turbulant Waters

My feelings may certainly change, but today I do not believe there are certain and absolute stages of grief (a list) or that you must go through all of those stages to cope, to heal, to move on. However, most telling is that the navigation of our own stages of grief will influence the decisions we make, the relationships we are able to nurture, the rest of our lives -  in general.

Is this the 'valley of the shadow of death'?

Instead, a friend describes it as waves in a turbulent ocean. With each wave, we are delivered a different emotion just as unique as the wave itself. I believe that too is an accurate assessment.

The relationships that we had with Bill (Dad) are each as individual as our own DNA due to birth order, gender, age and the stage he was in his life. Therefore, how could you subscribe to a notion that the stages of grief for each of us would follow any specific pattern?

Last week, I began searching for books to pass along to help us through this process. What surfaced was book upon book with recommendations and advise on navigating those 'perceived' stages. Much attention is given to "Fatherless Daughters" and "Fatherless Sons" and even more on "Grieving a Long-Term Illness" and "Grieving Sudden Death". You can check all the boxes as all apply.

Even though we can accept that our Mother was our first love and that bonds with our Fathers are unique, our loss will be even more unique that that. Bill was any and everything he needed to be. And not only a father to our own children, but a father-figure to many - and at times even to me, the wife.

Since my own father-figure was such a moving target, the manner in which Bill 'fathered' his children contributed to the unrelenting admiration and love I have for him. Obviously then, my own early loss dictated and influenced my future.

Then someone recently asked, "What will Rhonda do now?"

Obviously, Bill made such an impact in life, that his survivors were/are in some ways defined by that (to others). That without him, we must now find our own identity. Then, after a conversation with Little Miss at 3:00 am this morning, I find myself in overdrive today to separate our purpose in his life (involvement in the businesses, life, care giving) and the influence and imprint he left.

For most of this immediate brood of 8, he was the center of our universe. Some how, and without recognizing it, he uniquely and lovingly demanded it. But, I also know without doubt, Bill Brantley would never want the things that happened to him or the decisions he made to ultimately influence our lives to a degree that it defines us.

This is what I do not wish for our youngest...

"Hi, I am (NAME). I am a (OCCUPATION). I live in (CITY, STATE). I am (MARRIED/DIVORCED). I have (NUMBER OF CHILDREN). And, I lost my father when I was 19."

"But, I really lost him at 14 years of age when he was diagnosed and I began the grieving process. Then, we lost most everything to care for him. My life changed on a dime. Everything I knew was gone and something else kept leaving every day. I experienced loss everyday for many years. Now I feel lost."

This cannot define her.

Even though I recognize that each of us had a unique relationship with him and will obviously have very special feelings and memories, I separate Little Miss from the pact only because of her circumstances (age, timing, life experience, an older Dad, more end of life time with him).

That he may never see Little Miss graduate from college, or walk her down the isle does not mean that he did not influence it. That he will not be physically present for the birth of more grandchildren or great-grandchildren or personal accomplishments is a great loss for us, as the joy he possessed and showered us with was a gift; the affirmation of his love, his encouragement, an unbridled acceptance of our misgivings, the total package.

Personally, I believe that instead of dwelling on the notion that 'he will miss it', I will encourage us to preserve the memories by sharing the feelings we had with him during those milestones. I cannot even pretend to know what this looks like or at this point in time how foolish this may sound in a week/month/year.

But, if you're wondering what "Rhonda will do?" Now that reality is setting in, I'll most likely:

1) Think it and dissect it to a fault, then
2) Embrace it and navigate all the advise and commentary.

It's what comes next that's full of uncertainty. That I may be able to understand and cope better this week, that the oldest siblings may be able to get through this with better skill-sets, that levels of guilt or remorse may influence us differently or that this sudden absence will affect us for the rest of our lives are questions we cannot answer today.

So, how do we navigate these turbulent waters after walking through the valley of the shadow of death?

Perhaps we will stumble upon the right tools (therapy, books and manuals, mediation, church family). However, it is my belief that as long as we are willing to stand on the edge of the surf with Bill's influence in our hearts, the life raft we throw each other will be what defines us.

It will most definitely define me.

God gives us memories, that we may have roses in December...

It's been two weeks, today. Two weeks of the broadest wave of emotions. So vast, so unusual, so raw I cannot find the words to describe them.

I begin posting for solace after Bill's diagnosis in 2007. On the worst days, just writing it down and putting the angst into words was therapeutic.

Then, I found myself with nothing to say. The realities of what loomed ahead were just too ugly to confirm. To write it all down was just too REAL. Written documentation always is. To have to explain where we were and his level of impairment began to invade the respect and dignity we fought so hard to protect.

Alzheimer's doesn't really get you. It's what happens because of it. We knew early on that Bill's dementia was probably mixed and that an inherited vascular condition was likely the culprit. In the end, they're all treated the same. You just have to pick your battles and I am the most guilty for never fussing about the pleasures he derived from eating well. At the end of the day, if that's what makes you happy - it just made sense to me to load him up with a second helping. There are no good ways to explain to an AD patient how many calories they're allowed.

It was Easter Sunday. Kate was home from school and took off her regular Sunday shift to stay at home with us. I cooked all day and cooked more than I normally would, as Bill moved from the kitchen to the sofas - back and forth all day. He was happy, happy, happy. Mama was in the kitchen and Katie Doll was at home. He talked all day about how good it smelled, when it would be ready, the dates of our next road trip. Bill and Kate shared the batter from the mixer and bowl before the cake went into the oven. He took the trash out several times and promised to try and shower before bedtime. My regret is not documenting this with pictures and the camera was out as it always is.

Sundays are my days to study and work as the phone rarely rings. So dedicated to that day, I'm not sure I ever turned the computer on. Breezy and warm, the sun was bright and high in the sky all day.

The rest is still a blur, and surely God's way of doling it out in increments we can handle. Is that even possible? It's been shared that we will have bad days and better ones.

Just as we shared here to get us through the hardest of times before, I am hoping to rely on this platform to preserve our precious memories and share with caregivers the rest of the story. Things change so fast, but some things will remain the same. Our family is closer and our friends are dearer to us than ever before. In his last days, Bill was the most grateful, the most humbled and the most loved. We were the loves of his life and he was ours.

We laid my precious husband to rest on Friday, April 13, 2012. Below is an excerpt from our children...

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.