Vicki's Voice

Archive for the ‘Jim’s Notes’ Category

There are amazing heroes among us. Perhaps you know one or more of them. You may be one yourself. But I’ll bet most people aren’t aware of these heroes – and wouldn’t know about them unless they were involved. I’m talking about Caregivers – men and women who spend their days and nights caring for a loved one, family member or truest of friends who needs personal care for a debilitating physical or neurological disease, often a terminal disease. Many caregivers – perhaps most – are giving up all or a significant part of their own lives to assist their loved one with basic physical needs, emotional support and logistics of everyday living. Since I don’t walk in their shoes, I can’t begin to imagine what it’s like to give their lives for another person. They are uniquely and concretely living out God’s command that we love one another as we love ourselves.

I worry that Vicki doesn’t have a full-time caregiver. Her disease is taking a toll, but miraculously she’s still with us and still living at home. There are a handful of people who stop by and take care of some of her practical needs – sharing a part of their lives with her. A few others call once in a while, but Vicki increasingly feels anxious about telephone calls. The disease is doing that. Her main connections with people pretty much happen through Facebook games – and over time she’s finding it harder to play most of the games she used to.

This past January her kids gave Vicki a puppy – an energetic little Morkie that’s given her so much unconditional love and companionship that in many important ways Vicki is doing better than she was last year. But I still see that the disease is progressing.

Vicki has referred to me as a “part-time caregiver” for her. To part-time I’d add “long-distance” since I live a few hundred miles away. But compared to full-time caregivers I mentioned at the beginning of this post, I feel that I’m a far cry from being a real “caregiver.” I do try to visit whenever I can, but I know that she doesn’t want to be a burden on anyone and sometimes has discouraged me from coming. We occasionally talk on the phone and I watch her activity on Facebook (not in a creepy way) to try getting a sense of how she’s doing. When I do come and visit, I’m able to help take care of some practical things (for example, I recently called her cable company to solve a problem with her TV system). And we spend a lot of time talking – about little things and about bigger things like what she’s not able to do so well anymore. And sometimes we just watch a movie on TV. The “agenda,” unfortunately, is simpler now. But spending time together and doing practical things for Vicki are as important as ever, maybe even moreso.

But the time comes that really separates me from a real Caregiver. My visit with Vicki comes to an end and I drive away, back to my “normal” life with my family and my work, leaving Vicki to cope with the reality of her disease minute by minute, day by day. To be sure, as Vicki and my family know, I love my family and enjoy (most of) my work. But I do wish I could do much more for Vicki. I see that praying for Vicki as often as I do has helped my prayer life, and it’s good to hear about other people that are helping her too.

But the drive home after visiting Vicki is a tough one. Even though I’m driving home to a good place and a great family, I’m leaving Vicki behind, alone. It’s really hard to be a part-time, long-distance caregiver for someone who needs and deserves support and care all the time. Right there.

Jim Coyle

As Vicki Wells Bedard’s partner with Vicki’s Voice, I usually keep my posts in another section of the site (“Jim’s Blog”), and more often than not those occasional posts are about blogging software and techniques. This week, though, as cooling weather in the Midwest signals the upcoming change in seasons, I’ve been thinking about seasons and how they Affect – and Reflect – our lives. Fall, especially, is a reflective season, particularly for persons affected by terminal diseases that are bringing death closer than they’d expected – not only the sufferers, but their caregivers, family and close friends. All are profoundly and permanently affected by the disease.

First on Facebook and then here on Vicki’s Voice, Vicki Wells Bedard has been writing and will continue to write when she can about her experiences in life and what it’s like to live with terminal dementia. Although diagnosed with Frontotemporal Dementia (FTD) in the summer of 2009, Vicki showed the symptoms of this disease for several years before that. As with so many people, testing and diagnosis didn’t take place until the disease was quite advanced and her quality of life had been severely affected. Vicki, a very successful communications professional, was struck down in the prime of her professional life. FTD is a type of dementia second only to Alzheimer’s Disease in the number of people it affects. But unlike Alzheimer’s which typically strikes older persons, FTD most often strikes persons in their 40s and 50s (with many cases of people in their 20s and 30s) – the “Summer” of their lives.

I grew up in Michigan and have now lived in Ohio for 18 years. But for 12 years in my 20s and 30s, I lived in Florida. Months of beautiful weather every year, but no dramatic change in seasons like I’d grown up with. I’ve been glad to be back up North (although I sure miss Florida around February every year).

For me, Spring is a wonderful season. Temperatures are warming up, the seemingly endless gray skies of Michigan and Ohio winters give way to some bright sunny days. After teasing us with a few early blossoms, flowers start to bloom. Bare tree branches put on their covering of green leaves and the brown grass morphs into a soft green blanket. Spring is a hopeful season, one of refreshment, renewal and anticipation of the warmth and life of Summer.

Fall is another season of transition, and along with Spring one of my two favorites, but it’s a “mixed bag.” On one hand, I enjoy the cooler weather and the brilliant colors of autumn leaves. I have fond memories of going to the cider mill in Franklin, Michigan every Fall as a child, feasting on fresh apple cider and just-made donuts.

But Fall eventually brings bare trees, dormant grass, and ushers in the seemingly endless gray Winter of the Midwest.

To be sure, there are great high spots in every season, times and events to be celebrated. But the cycle of seasons is similar to the cycle of our lives here on earth – but our lives have just one cycle.

All forms of dementia are tragic diseases for the person who suffers and for their family and friends. But it’s especially tragic when large numbers of people like Vicki and other persons I’ve met with FTD are struck in the Summer of their lives – times when they’re experiencing real success in their jobs, times when so many have children at home they’re raising and enjoying and anticipating great futures together. Dementia is cruel at any age, but especially so when it strikes people in the prime of their lives.

As the number of persons diagnosed with early types of dementia continues to grow – and millions more exhibit early signs of dementia – it’s become more crucial than ever to educate members of the medical community and the overall population about the need to recognize, acknowledge and investigate early signs of dementia. The numbers of people affected will keep growing significantly. If diagnosed early, a person can experience a greatly improved quality of life, benefiting themselves, their families and their friends. Right now there’s not a cure for dementia, but having a better life during one’s final years is priceless. And we hope and pray that one day there will be a cure for future generations.

In addition to educating about the medical and psychological importance of early diagnosis, the social stigma attached to dementia must be eliminated. One way that will help is to recognize these are diseases. In fact, there’s a movement underway to rename FTD Frontotemporal Disease instead of dementia – for it is a disease. Instead of feeling isolated and outcast, the victims of these diseases need participation in family life and society to the fullest extent possible. It’s a matter of moral and social justice, and the most loving behavior one can show to a family member or friend.

As the cooler weather stays in her hometown and the breath of Fall become stronger, what is Vicki thinking, feeling, experiencing? How much effect does the season of the year have, if any? During the past year, Vicki’s life has been a physical and emotional roller coaster. She’s already lived better than her doctor said she would when giving the diagnosis of FTD. I’ve seen Vicki exhausted and discouraged, which she’s sometimes written about during the last year and a half. And I’ve also seen Vicki at the top of her “game,” sharing ideas and plans as well as she ever has at meetings about a special project a couple of weeks ago. Vicki has given us a precious gift by writing candidly about her highs and lows, usually with a smile.

Every day can be dramatically different for Vicki and for the other people I know with FTD. I hope that my care, my concern, and my actions will help Vicki and others live each day as best as possible. That’s the gift we can give to those we know and love.

Papa, it’s Jim.

Today in New Orleans, at the Catholic Media Convention, Vicki Wells Bedard received the 2010 President’s Medallion, the highest award presented to a member of the Catholic Academy of Communication Arts Professionals. I was honored to be there with Vicki when she received the award, and wanted to share this audio recording of the award presentation, which includes a very moving response by Vicki.

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Vicki will soon be sharing her thoughts and feelings about receiving this recognition by her peers. Receiving this professional award has been a real blessing for Vicki.

Jim Coyle

(Note: We’re using a Flash audio player. Some web browsers may not display the player, or connection speeds may affect playback. If you encounter a problem, you may download the audio file and save it to your computer for playback. The file size is 12 MB.)

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

Some people have asked me about starting a blog, so I’ve begun my response by writing a post on the “Jim’s Blog” section of this site. Just click on the tab at the top of the page. More thoughts will be coming.
Jim Coyle

I’ve started a new blog as a page on Vicki’s Voice to share some of my thoughts and experiences of knowing Vicki and supporting her on her journey with dementia. I wanted to post a short note letting you know about this new blog, and I’ll be telling you more in the weeks to come. If you haven’t already noticed, there’s a new Tab at the top of the page to get to “Jim’s Blog” anytime.

Take care. Jim Coyle