Sunday, February 3, 2013

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.

5 comments:

  1. Hi Rhonda,

    We recently came across your Diagnosis Alzheimer's blog.

    Earlier this year we launched a new website called www.practicalalzheimers.com that provides practical information on Alzheimer's disease for patients and carers.

    We really like your blog and we are looking for contributors.

    Would you be interested in writing a short article (300-600 words) for our website?

    Perhaps something about your own experiences with Alzheimer’s, or the advice that you would give to people who have been either directly or indirectly affected by the disease.

    We hope that you will find our new site useful and will consider sharing some of it with your readers.


    Best wishes,

    Alex
    info@practicalalzheimers.com
    The Practical Alzheimer’s Team

    ReplyDelete
  2. tracy.rose@healthline.comMarch 7, 2013 at 2:01 AM

    Hi Rhonda,

    We appreciate your participation in our annual Best Health Blog Contest. As a token of our appreciate we're awarding you with a badge, 'Voted One of the Top Health Blogs of 2012.' You can find the badge at: http://www.healthline.com/health/26055

    Also, if you haven't seen it, we recommend reading about this year's winner: http://www.healthline.com/health-news/breast-cancer-blog-wins-Healthline-contest-022013. She is an inspiration for many.

    Please let me know if you have any questions. And, we hope to see you next year! In the meantime, please stay in touch by connecting with us on Twitter @healthline or Facebook: https://www.facebook.com/healthlinenetworks.

    Warm Regards,

    Tracy

    ReplyDelete
  3. I work in the Care industry and it is one of the toughest things to deal with seeing people upset once the realization that a member of family is not there anymore, we are always asked by people if they visited enough or could have done more, 99% of the time they have done more than enough and when it is time it is time.

    ReplyDelete
  4. Hi Rhonda,

    While researching health blogs I found your blog. Your story is very moving. Your a very strong woman, not everyone would be able to care so dedicated and loving for her husband. Your blog post 'I Wish I Could Have Said Goodbye' was so good. I don't think I know what your must go through everyday, but I have my experiences with not being able to say my goodbyes too. So sometimes I ask myself the same questions - Did I tell them enough times that I love them? - Should I have called more often? This was a great post, thank you for sharing.

    I was wondering if I could contribute a guest post to your site? I am working with a lead nutrition specialists trying to increase Migraine and Alzheimer awareness on the occasion of the Migraine Awareness Week (1st September to 7th September 2013) and the World Alzheimer's Day (21st September 2013).

    How do you feel about working with publishing partners in this area of expertise?

    I look forward to hearing from you soon (ihunkeler@blueglass.co.uk).

    Warm regards,
    Irma Hunkeler

    ReplyDelete
  5. http://caregiver.md
    caregiver.md@gmail.com
    586-265-1097 text me
    I’m a caregiver in Detroit area, MI.
    If any questions, contact me. Sincerely, Diana

    ReplyDelete

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