Vicki's Voice

Archive for the ‘Friends’ Category

Vicki and I have met many wonderful people – some online and some in person – whose lives have been affected by FTD. Some of them share about their lives through writing – books, blogs, Facebook posts. Earlier this month one of our friends, Michelle Sewell Burdette, shared her memories and thoughts on the 1-year anniversary of her father’s death from FTD-Pick’s. We wanted to share Michelle’s story with you and she’s given us permission to post it here. – Jim Coyle

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(Posted online by Michelle Sewell Burdette January 5, 2011.) A year ago tonight was the last time I went to bed wondering when I would receive “The Phone Call”. You see, I knew “The Phone Call” would be coming very soon because I had been with my dad at Christmas and realized it was time for the Lord to bring him home. “The Phone Call” came at 3:45am on January 5, 2010. My Daddy had gone home to heaven.

I knew since the day we received the diagnosis of FTD- Picks that “The Phone Call” would come someday. After all, I’m a research fanatic so I had read all about the disease, learned what the prognosis was, learned what the symptoms of early, middle and final stages were. Armed myself with a wonderful online support group for families with a loved one suffering from FTD Picks, bought and read books on the disease, and realized that with no treatment or cure, there would be several last times with my dad. There was the last time that he knew who I was, the last time I heard him speak, the last time he voluntarily hugged me or kissed me goodbye, the last time I played the piano for him, the last time he smiled at me and the last time I told him what a wonderful Daddy he was and how much I loved him and said goodbye and then stood in his room at the nursing home (Dec. 26th, 2009) and prayed for God to take my Dad home and welcome him to heaven.

I’ve learned so many things, some good, some bad, and some just plain life lessons in the past year. As I sit here struggling with the fact that in a few hours, it will officially be one year since I lost my dad; so many things are flying through my mind and I want to write them down and share them with the hope that I can offer hope, growth through what I’ve learned, or just plain make myself feel better because I’ve gotten it out of my system. If you’ve been tagged to this note, it’s because I feel there’s something written here that you can either benefit from, be blessed with, or so I can thank you.

Here’s what I’ve learned:
1. NO ONE can ever replace a little girl’s Daddy. He is a one of a kind person and relationship to a daughter. To the daddies and the daughters out there, realize how important the father-daughter relationship is and nurture it into the beautiful garden it becomes over your journey together.
2. I was extremely blessed to have received the earthly father I had for he taught me so much and continues to teach me even to this day. There are times when my father’s words echo in my head over and over when I’m working through difficult tasks. And, as always, heeding to his advice has served me well.
3. I enjoyed a 41 year relationship with my father that many are envious of. That in itself is a blessing to have such a wonderful relationship with a father. No relationship is perfect and every relationship requires work. However, if the relationship is strong and loving, even the arguments or disagreements can be worked through quickly.
4. Cherish every second you have with your loved ones whether they’re healthy or ill. You will always have the memories and not even death takes those away. Ironically, FTD can, but not death.
5. Treat each moment with people as if its the last time you’ll see them. We all know death can come at anytime with no warning. It’s much better to live with memories then live with regret.
6. No two people grieve in the same manner. Some people choose to ignore the grieving process and deal with the loss by keeping busy. Others choose to openly express their grief. And still others, will remain as stoic as possible and grieve only in the privacy of their homes.
Then, there are people like me. My grief journey is an up and down battle so far. Some days I just burst out crying over a memory and from the longing of wanting to talk to my dad. Other days, I think of things he did or said and smile or actually laugh. For the most part, I try to remain stoic when around others and only allow myself to cry when I’m by myself. I’d rather experience those moments between me, God and my dad.
7. The best advice I received was to create a place in my yard where I could go to just sit by myself and think about my dad, talk to him if I wanted to, or just smile as I walk by. I simply planted two yellow rose bushes on Father’s Day near a large tree and added a memorial stone stating, “Planted in memory of a life well lived”. I’ve spent a lot of time out there over the last 6 months.
8. You cannot, no matter how hard you try, put a timeline on grief. I will always miss my Dad, I will always wish I had more time with him, and I will always love him with all of heart. The loss of such a relationship cannot be resolved by putting a timeline on it. There never will be a “project finished” point. There will, however, come a day when I will be reunited in heaven with my dad. What a blessing it is to know that!

I’ve received many blessings in my life and some of the blessings have come through the loss of my father.
1. I’ve met some wonderful people who have become trusted non-judgmental listeners.
2. My relationship with my brother Mike has deepened and we are in contact much more frequently now.
3. My relationship with my mother (which has always been good) has become so much more than a mother daughter relationship. She TRULY is my best friend.
4. I have met two wonderful people that I have to name on here because they are so inspiring to me. Vicki Wells Bedard and Jim Coyle. Vicki, you have given me what I missed on our FTD journey with my dad because you choose to remain so open about your own diagnosis and blog and share your thoughts, fears, successes, trials and tribulations. I could never thank you enough for sharing your journey with us as well as shedding light on a disease that is in severe need of attention. Jim, the work that you do helping Vicki, your community, the FTD community and your general nature are a blessing to me as well. I truly feel blessed that my life has been enriched with your presence.
5. I have been blessed to be reunited with old friends who knew my dad which allows me the opportunity to laugh over things I’d forgotten he did or chuckle at some of the things he said.
5. Finally but definitely not the least, to the entire Leiphart family, an entire family that’s blessed my whole family over the years. I can never repay or even begin to express my gratitude to all of you for your constant and continued support of my mom and dad while he was ill as well as the open arms you continue to all have for my mom. Sandy, Larry, Mark, Debbie, Julie and all, you have my forever gratitude for being the family for my mom since I’m not in Pennsylvania to be there.

The last thing I want to write is to my Dad.

Daddy,
I know you’ve seen our tears shed because you are no longer with us. But we all know this journey ended as it should and we know we’ll see you again in God’s time. The tears shed are our tears of missing you, loving you, and loving all the memories we each have of you. We are happy that you are at peace with our Lord, but we are human beings and tend to be selfish. I would do just about anything to be able to have one of your huge bear hugs, hear your laugh, or get a call from you to say Hi. But I do realize that you’re in a better place than we are here. On this one year anniversary of your homecoming, I just want to tell you that I love you to heaven and back and always will.
Love and miss you forever,
Your “Missy Boo”

Bruce Bane is kind enough to let me share his thoughts from his own blog, Living With Dementia. We have a small group of us with FTD that apparently don’t know we aren’t supposed to write or speak, or be creative. Here’s some beautiful samples of seeing the world through Bruce’s eyes. Enjoy.

Fair Photography Results

Posted July 27, 2010

Filed under: Reflections |

I went to the fair today and found out that of the 15 pictures I entered 4 won 1st place and 11 won 2nd place. I’m very happy about this. It feels good to be able to do something that is on par with people who don’t have dementia. The first places photos are below and you can see both them and the second place photos on my photo album page.

These are just two samples of his amazing work.

Now here’s his blog about how he came to be there:

I’m doing something this Saturday that I’ve wanted to do for several years – I’m entering some of my photographs in the county fair. It took the encouragement and help of the nurses who work with me, but in the end it’s my project and I feel good about it. Like I said, I’ve wanted to do this for years, but kept putting it off thinking there would always be time. But dementia has made me realize that isn’t true.

I’ve always enjoyed photography. And I’m lucky I can still take pictures because there are other things I can’t do anymore, things I should have enjoyed more when I was able, things I would do if I could. These are things that are lost to me because of dementia. They make up a kind of “could ‘a, would ‘a, should ‘a” list; things I could ‘a, would ‘a, should ‘a done if I’d have known what life had in store for me. Instead, I took my life for granted. And now I know I need to let go of the things on that list, but it’s hard to do. So it’s good to have things like photography, painting and writing that I can hang on to. Being able to do these things help to take away some of the sadness of the “could ‘a, would ‘a, should ‘a” list.

So wish me luck. I can’t deny that I would like to win some award. But even if I don’t, it’s been a fun project and I’ve gotten a lot of affirmation from the people who have helped me. I will post my entries on the photo album page of this blog and on my Facebook page. And if I do win anything, I’ll let you know.

Congratulations, Bruce!! You inspire us, your words are our own, except we can’t find them as beautifully as you can. Love & blessings, Vicki

{{{{{Bruce}}}}}

Most of the posts here on the main page of Vicki’s Voice are written by Vicki herself. Once in a while, though, I jump in to share something about Vicki that helps tell her story, helping you know Vicki better. As Vicki and I have each written earlier, the main reason for starting this blog is to help connect people, especially persons affected by dementia and other neurological diseases, and support one another in what can be incredibly difficult times. Through her writing, comments and other interaction with people through Vicki’s Voice and Facebook, Vicki shares herself with others, and with generous doses of wit, honesty and wisdom, helps many of us reflect on our own lives and in some cases open interior doors that may have been closed for a very long time.

On Facebook yesterday, in the midst of several days in which she hasn’t been able to speak, Vicki asked for prayers that her voice would return – even for 15 minutes – so she could record an important acceptance speech in case she can’t speak aloud at an upcoming conference. Since reading that request, many of us have been praying for Vicki’s audible voice to return and leaving comments to let Vicki know we were praying for her. Among those comments is one from a Facebook friend, Hope Grace, that expresses so well what Vicki is doing for other people through her life and her communication. I feel it’s important for Vicki, for me, and for all of us to read this. I doubt that Vicki would post this here, so I’m glad I have a “key” to the front door and can share it with you, with, of course, Hope Grace’s permission:

Some of my random thoughts about Vicki and her voice:

Vicki teaches me. She may find that traditional English language words fail from time to time, but her spirit voice shouts – perhaps her version of her “inside voice” – chock full of all the loudness, the gregariousness, the excitement of her outside voice, and we train the ears of our soul to hear it. What’s in Vicki’s spirit voice? Right now…perhaps some fear of the future. Fear that those entrusted with her care will not be authentic, will not speak the truth, will put on a fabricated show with certain enhancements, as if to get the ratings up. Fear that no one will hear. Fear that only the perception of the words of the others speaking on her behalf will now become the persona of Vicki rather than Vicki’s own voice speaking on her own behalf. Fear that her lived truth will not be heard. Fear that this creative, compassionate, fully-alive, brilliant, animated, energetic, accomplished woman who has used her written and spoken voice to transform and to cause change will be voiceless. Never. Perhaps simply shifting from outside voice to inside voice when she needs to. Voiceless? Never.

Vicki (and I only know of her through Facebook) is a leaper…free falling…leaping, risking, being vulnerable, saying YES, taking her own private, creative thoughts and ideas and leaping out into the unknown of sharing them with others. She never knows what their response will be, but this courageous woman always takes the leap, nonetheless, knowing that it is better to leap and risk and trust. Vicki is NEVER lukewarm. She stands for something. Even if she has fears, she risks. She connects. She shares. And oh, look at the work she has done. Looking to the years ahead now…one day unable to vocalize with her outside voice, maybe. Gasp. One day unable to type and express her outside voice through print, maybe. Gasp. One day unable to make a sandwich, even one with atypical fixins, maybe. Gasp. Going between outside and inside voice – it’s okay, it’s okay.

“In the arms of Papa” she writes frequently. Inside voice or outside voice – she speaks authentically. She speaks the truth. Always the truth. Does she actually “see” the arms of Papa the way she can see a six foot banana? I don’t know for sure, but probably not. But are the arms of Papa there? I learn from Vicki’s faith. Vicki spoke it. Vicki lives it. Vicki trusts it. Vicki goes forth and doesn’t wuss out. Despite any secret fears, Vicki leaps. Lookout baby, here she comes. It’s a free fall, but she leaps. She trusts. Vicki teaches me that leaping is where it’s at. And so I study and observe carefully, hoping to do as Vicki does. One day, if she finds she is only able to speak with her inside voice, I believe she will fully leap into the arms of her Papa with a big bright smile, a twinkly wink, a compassionate, playful, authentically encouraging “Neener, neener, neener” – looking back and nudging along those of us who have yet to leap.

Thank you, thank you, thank you, Vicki.

Hope Grace

And our deepest thanks to you, Hope Grace, for putting into words what so many of us feel and experience. God bless you.

Jim Coyle

In terms of “Internet Time,” Blogs are among the senior citizens of the Web. The term “weblog” – later shortened to “blog” – was coined in 1997 as a way to describe some forms of online diaries or journals through which people shared about their lives, interests, and so on. Since 2002, over 133,000,000 blogs have been indexed by the web service Technorati.

Blogs come in many, many styles, and cover, well, just about every topic we could think of. Blogs come in different sizes too, one of the latest big trends being “micro-blogging” – posting short updates through sites such as Facebook and Twitter. And if I’m not near a computer, I can even use my mobile phone to find out what I’m doing.

Individuals and groups have used oral communication, print, audio, video, and now online “virtual” tools to communicate with one another. But the old tools don’t disappear. They’re ready to give us different ways to reach and interact with other people.

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When I found out last summer that my friend Vicki Wells Bedard had been diagnosed with something called Frontotemporal Dementia, or FTD, I drove the few hours to her home for a visit. We talked of many things, including, obviously, including FTD. Vicki mentioned two books she read soon after her diagnosis that helped her better understand what this disease is and how it’s likely to affect her. (These books are “Still Alice” and “Dancing with Dementia”.) When I got home, I ordered the books and read them right away. These and other books I’ve read since then have helped me understand to an extent what Vicki and other people with dementia are going through. (There’s a list of these and other related books under Resources at the Vicki’s Voice blog (vickisvoice.tv).

One of the other things Vicki said that stuck with me was that she wanted to communicate with other people who had FTD to find out what they were experiencing, but she hadn’t found anyone. Vicki talked to people at the organizations dealing with FTD and was told most people with this and other dementias aren’t diagnosed until the disease has advanced significantly enough that they can no longer communicate effectively with others. Knowing there had to be other persons with FTD that could still communicate, I joined Vicki in the search. During the Fall and early Winter we each found out about a few blogs and Facebook pages by persons with FTD and other dementias and excitedly shared each discovery with one another.

Who we’ve found are people telling their personal stories about the struggles and occasional triumphs of living lives radically changed forever by the terminal diseases of dementia. And even though everyone was geographically separated, we became friends and members of a small community of people sharing their very important stories – and themselves – through blogs and other means of online expression. For most of our lives, this kind of communication and community support was impossible.

As I mentioned earlier, blogs come in all styles, reflecting the “voice” of the person behind the words and pictures present in many blogs. So far, we have about a dozen blogs by persons with dementia listed in the right-hand column of Vicki’s Voice, and they each have a different style, a different voice. Let me share a couple of examples. One of the first persons with dementia we “met” online is Bruce Bane. Like Vicki, Bruce had been posting his writings on Facebook and has since started an outside blog, “Living with Dementia: reflections on how dementia affects my life and relationships.” In most of his early posts, Bruce shared his thoughts and reflections in a poetic form, sharing his story very poignantly and powerfully. Here’s a recent post, “Who Am I Becoming”:

If life is the process of becoming who we are meant to be
And then being who we are (no more, no less),
What does that mean for me?
Gradually it feels like I’m becoming less of who I am
This thing called dementia is draining me of myself
So I wonder, “Who am I becoming?”
When all is said and done will there be nothing left of me?
Or will there still be a spark that others can point to and say,
“Yes, that’s Bruce. I’d know him anywhere.”
In response I might nod, or wink, or smile and point a finger at you, as if to say,
“I know you.”
And in that moment we will both know this:
It is the life we share that has the final say, not dementia.

Another person we’ve met online writes under the name SoulfulSilkee in a blog titled “I am dying.” The posts include accounts of her health, information about people and organizations working on FTD, and resources she finds helpful. Here’s an example from a couple of months ago:

Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

The last blog I’ll mention now is “Vicki’s Voice.” Not only is Vicki a very good friend, she’s one of the best writers I’ve ever come across. The pictures she paints with words take me to different places and times, and almost always include smiles, chuckles – and sometimes outright laughter. She also brings us into her life coping with the changes brought about by her dementia. But don’t take my word for it. Why not do these two things right now:

1. Use the ShareThis button below to share what you’ve just read. I need the exposure
2. Then use the “Home” button at the top of this page to read Vicki’s posts. I think you’ll be glad you did.

Later, visit some of the Other Personal Stories links on the right side of the page to read and hear more Voices from our Online FTD Community. And as always, we’d love to read your comments anywhere on our website.

Jim Coyle

This week – a new friend – Susan Grant, also an FTD sufferer, is having a wish come true. Despite the roller coaster of her disease, she and her caregiver will be holding the opening, several years in the making, of their documentary, “Planning for Hope”. Congratulations, Susan and Cindy!!! May God bless you abundantly!! You give us hope.

Here is a trailer for the film:

You can find out more information about the film at ftdtheotherdementia.com.

Love, Vicki