Seasons and Life

Jim CoyleAs 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.

This bud's for you

Spring leads to the warmth of Summer when budding flowers open to celebrate life.

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.

Winter branches, dormant, fleetingly encased by a passing storm.

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.

Leaves are most colorful in the Fall!

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.

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    • Rebecca on September 17, 2010 at 7:15 am
    • Reply

    It’s so true…my Dad was diagnosed almost 2 years ago, and now…well, he has changed so much that he is mostly unrecognizable. This is a horrid disease, and there will be so many more people affected. One thing that Vicki is very lucky to have is a home in which she can stay and be cared for. That was not possible in our situation; both my husband and I have to work, we have a small child, and we have stairs in our home, and all of these things have made it completely impossible for us to care for him. Our biggest challenge has been finding a place that can. He has been in 4 different homes since March, all of which claimed they could handle dementia. In fact, the last home he was kicked out of received a 120 page report detailing my father’s behaviors, and I had a long talk with them upon admission, and they were confident they could handle him. He lasted 4 days before they called 911 and sent him to the hospital. The lack of care has added a huge stress on an already terrible situation. Also, it is costing TONS of money…unnecessary trips back and forth to the hospital for a stay in the adult mental unit (we already know his problem!) and transporting him is tricky, because he will try to jump out of any vehicle unless he is strapped in, so those special ambulance rides cost a fortune. We need to build a better community for these people and their families, one that is more efficient and makes sense. Because if trends go as predicted, there are going to be a lot of people in my same situation, and I wish this on no one.

    Give my love to Vicki. Hugs to you as well.

    1. Here to give you love back. With the holidays being set in place, this is often the hardest time of the year. I sit and watch my daughters doing all the things I used to do, and can do no more. It’s almost an envy that they still can. And an anger that I cannot. Frustration.

      How has your dad changed? I know from my parish nurse, we are “hellers” to care for, so I’m assuming my delightful good humor might not be with me in the future. If you want to share, you can reach me at my private email. Let me know and I will send it to you.

      Don’t put yourself down. I took care of both parents before they died, and was raising 3 kids as a single mother. I thought I would lose my mind (and sure enuff my prophecy has come true! ;o) You must take care of you and your family first and foremost. Be rested so that when you see your dad he can see you like he remembered.

      It’s hard not to feel guilty, and some family caregivers become ashamed. I do, and my family expresses it on their end. Not good emotions to carry around, Rebecca.

      Will pray for you and your family. I wish, like Holly, there was a place just for dementia patients. I know I would not fit in well with a regular Alzheimer center. I’m too young (LOL) and I still have a need to produce.

      I believe there is a new center in Houston, TX. I’ll try to get the info and post it.

      Both you and Holly might get some good ideas from Best site for information for caregivers and sufferers of FTD.

      Blessings and prayers for your holiday and for a better 2011. Please keep in touch.


    • Freda on September 17, 2010 at 2:16 pm
    • Reply

    Thankyou for this thoughtful and thought-provoking update.
    Moving peole with FTD, Alzheimer’s and other dementias can be very disorientating, often a setback in quality of life. I agree with you Rebecca, a better, more efficient and more sensible system is definitely needed.
    Hugs freda

    1. Hi, my Freda!!

      I’m agreeing with the worry about moving. I was in and out of hospitals for about 3-4 months altogether. It set me back a long way, and excellerated my confusion, coupled with a sense of fear, causing apathy.

      I had to big moves during the last few years before my diagnosis and I was literally frozen by the prospect.

      Love and hugs,

    • Vicki on September 17, 2010 at 2:52 pm
    • Reply

    Jim, this is a wonderful, insightful piece. You’ve read my mind. I’ve slipped into the Autumn of my life now, and it is bittersweet knowing I probably won’t see the tulips in the spring, that ‘garden’ won’t get planted, my book never published. Nor be there when my grands graduate from college.

    But, Papa, has done well so far, I must say. But as I enter into my 2nd ‘season’ of FTD, I am well aware that this could be my final & last stage. Even as I type this, another infection is running through my body, I’ve truly become incontinent, and the withdrawals need to be longer, so I can rest my mind, ‘hibernate’ like all the animals are preparing to do. (Wish those skunks would get settled, and real soon!! ;o)

    But I’m not hoarding things to have at the ready in the Spring. Except maybe memories. And I know they will be fleeting, too. Like capturing the silk of spider webs…

    Thank you, friend and co-worker, and thank you Rebecca & Freda for your thoughts.

    All my love, Vicki

    Papa? I’m still here…

    • Fran Vitale on September 17, 2010 at 7:36 pm
    • Reply

    I lost a friend to cancer this week. He was only 49. He lived long enough to see his son Austin graduate from high school but not to see his daughter Maddie graduate. She’s in eighth grade. It is a reminder to all of us to live every moment as if it were our last. Seize the day and love with every ounce of our being those that God has put on our path. Take care Vicki. I pray for you every day! Fran

  1. Thank you all for sharing you thoughts and memories. I’ll keep you and your loved ones in my prayers, and your friend’s family, Fran.

    Hugs, Jim

  2. Thank you Jim for your insights and relating FTD to the ‘seasons’ of our lives. And thank you Vicki for your courage in writing your inner thoughts and feelings.

    My husband was diagnosed in 2007 (age 57) with FTD and every day I gain more of an appreciation for how he (and our children) are walking through this journey. There are many difficult challenges but I am finding a balance with the beautiful moments. I want society (and medical system) to understand that those affected with dementia may seem and act like a child, but they still have wisdom which shines through if they are encouraged. My dream is to build a self-contained natural retreat on acreage for people with dementia (and their families). It will be peaceful and safe enough for them to walk among trees, birds, gardens, and stimulating enough to give them a better quality of life. Just like Jim said…”Right now there’s not a cure for dementia, but having a better life during one’s final years is priceless.”

    Thank you again for your post and many hugs,


      • Jim Coyle on September 22, 2010 at 8:20 pm
      • Reply

      Thank you for your note, Holly. You, your husband and your family are on a difficult journey and I’m so glad that you’re able to recognize and experience the beautiful moments when they occur. They are yours to treasure. And your dream of a natural retreat for people with dementia and their families is beautiful – and so needed. You will all be in my prayers, as is your dream.


    1. Hello,Holly.

      Your story tugs at my heart, for what you and your husband are going thru. Doesn’t seem fair somehow, does it? But what a gift you are not only to him, but to all of us. I read every note from a caregiver, trying to see if there is a matching ‘map’ that will help my family better understand what is going on in my own life, maybe I can become enlightened as well.

      I love the dream you have. Like Jim, I will keep that hope alive with prayer. I agree with that. I am fortunate to be able to live on my own, thanks to family, neighbor and parish support. But it becomes harder to perform routine personal hygiene, let alone picking up after myself.

      I pray that God will show mercy to us and our families, and to the caregivers who will ultimately be our residence.

      Blessings and Love, Vicki

  1. New post : "Seasons and Life" on Vicki's Voice #dementia #FTD

  2. New post : "Seasons and Life" on Vicki's Voice #dementia #FTD

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