Blogger who has Lewy Body Dementia

Recently a gentleman named Robert Bowles spoke on a webinar about Lewy Body Dementia (LBD).  Robert is a retired pharmacist, who began having neurological symptoms in 2010.  After seeing several physicians, he was diagnosed with LBD in June 2012.  He lives in Thomaston, GA.  In January 2015, he created a website called “Lewy Body Dementia Living Beyond Diagnosis” (lbdlivingbeyonddiagnosis.com).  He seems to post to the blog once a month though he hasn’t posted since December 2016.

Here’s his message on the home page of his website.

Robin

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lbdlivingbeyonddiagnosis.com/index.html

Robert Bowles
Lewy Body Dementia Living Beyond Diagnosis

This website has been created out of a deep love that I had for patients in my pharmacy practice, families, care partners, and others.  My prayer is that with me having a strong foundation in faith as a result of having two Christian parents, having a Mom and Dad with dementia and now with my diagnosis of Lewy body dementia that I will be able to offer insights from multiple perspectives as it relates to dementia.  The resources that are provided should help persons with dementia, families, care partners and others have a better understanding of what it is like to live with dementia and how to care for those living with dementia.  I have a deep passion for better education and understanding for care partners.

As you visit this website, you will be coming into my world of living with Lewy body dementia (LBD).  My goal is to transparently share my experiences with this horrific disease.  I will share the good, the not so good and the ugly in my personal blog.  In my faith blog, I will share how my faith has been my foundation and helped me the most in living with LBD.  There may be things that I write about that you might think are impossible and things that you do not agree with; but, remember you have come into my world with LBD.

June 2012, I received a diagnosis of dementia with Lewy bodies (LBD).  Actually, this gave me peace of mind because I had visited 7 previous physicians and had not received a diagnosis and treatment that was bringing closure for me in regards to the health issues I was experiencing. The peace that I felt was so great that I told my wife 10 minutes after diagnosis, “It is what it is and everything will be OK”

Soon after diagnosis though I begin to think about a patient of mine in my independently owned pharmacy who died with LBD.  I thought about the problems and difficulties that he and his family experienced as it related to his diagnosis.  It seemed as though my death sentence had been issued.  My thoughts were that my life seemed like that of a convicted murderer.  A physician had entered the charges against me, a trial had taken place, I had been found guilty and a judge had announced the sentence — without appeal.  During my initial research on LBD, I found reports of persons living from two to twenty years after diagnosis.

These statistics were not encouraging.  I decided, however,  that I was not a statistic. I acknowledged that I was a human being; born through a miraculous process and created by God with certain inalienable rights.  My decision to live and outdistanced the statistics was one of my God-given rights.  The decision did not mean that I would not have battles, trials and tribulations along the way.  Maintaining the desire to live has been a struggle at times. As I face the many struggles, I rely on my faith in God.  One of my favorite verses of scripture has been a constant source of encouragement to me knowing that I do not travel this journey alone.  Phillipians 4:19, “And my God will meet all your needs according to the riches of His glory in Christ Jesus”.  Also, my wife and entire family are with me every step of the way.

My choice to live with LBD well, drove me into dementia awareness and advocacy.  I wanted others to know that there was life after a diagnosis.  Realizing there was very little information that chronologically sets forth someones path with LBD, I wanted to share mine with the prayer and hope that others with LBD and their care partners might receive benefit.

I wanted others to know there was no stigma in having dementia. I dream for the time when there will be no stigma in having dementia.  I dream for a cure of dementia.  I dream of persons with dementia being better educated about their disease.  I dream of better education for care partners.  I dream for better education and understanding about dementia for family and friends.  I dream of memory cafes in every town and city.  I dream of dementia friendly businesses so that persons with dementia will not isolate because of how that might be talked to.

Individuals with dementia can still do a lot of things.  We all need to be getting this message across.  We just have to accept our diagnosis, find our new purpose and develop strategies of living with our disease well.

There is a lot of work to do in dementia advocacy and helping others understand there is life after diagnosis.

(c) 2015, Robert Bowles

“11 Things You Should Never Say To a Caregiver”

I hear from *some* caregivers at caregiver-only support group meetings that they don’t like hearing the question “what are you doing to take care of yourself?” I never minded this question because it did make me stop to think. As we know, self-care is critical for caregivers. Apparently there are lots of caregivers out there who don’t like that inquiry… along with ten others!

Here’s a link to a post on AgingCre.com from 2012 (?) on this topic:

www.agingcare.com/Articles/things-not-to-say-to-a-caregiver-152083.htm

11 Things You Should Never Say To a Caregiver
By Anne-Marie Botek
AgingCare.com
Published in 2012?

(I read about it today on an online FTD support group.)

The” eleven things you should never say to a caregiver” include:

* “Gosh…we haven’t seen you in such a long time. Why don’t you get out more?

* “You look really tired. Are you making sure to take care of yourself?”

* “Let’s not talk about that. Let’s talk about something happy and fun.”

The full post is copied below.

Robin

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www.agingcare.com/Articles/things-not-to-say-to-a-caregiver-152083.htm

11 Things You Should Never Say To a Caregiver
By Anne-Marie Botek
AgingCare.com
Published in 2012?

Some things simply shouldn’t be said.

When they come from people who don’t know what someone else is going through, even well-intentioned comments and questions can be frustrating and hurtful.

Cindy Laverty, caregiver coach, radio talk show host, and author of, “Caregiving: Eldercare Made Clear and Simple,” offers examples of phrases that can leave caregivers thinking, “Did she really just say that?”

1. “Why are you having such a hard time being a caregiver?” Usually voiced by someone who has never been a caregiver for an elderly loved one, this question can be very difficult for a caregiver to hear. As Laverty points out, it effectively takes their role of providing care for a loved one, and diminishes it.

2. “Gosh…we haven’t seen you in such a long time. Why don’t you get out more?” Though it probably comes from a place of love, Laverty points out that this can be an unproductive way to express concern for a friend or family member who is a caregiver. “The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it,” she says.

3. “You look really tired. Are you making sure to take care of yourself?” Caregivers generally have a good reason for looking tired and haggard—because they are. “The biggest issue for caregivers is that they tend to sacrifice personal care—it’s the first thing that goes,” Laverty says. Caregivers look tired because they are not getting enough sleep, they spend their nights worrying and making sure their loved one doesn’t wander. But, that doesn’t mean that they appreciate having that fact pointed out to them.

4. “Caregiving seems like a burden. You shouldn’t have to sacrifice your life for your mother’s.” Caregiving is hard. That’s why so many people, both caregivers and non-caregivers alike, refer to it as a “burden.” But, according to Laverty, when a friend or family member likens caregiving to a burden, what they’re really telling the caregiver is that they aren’t handling the situation properly and that this isn’t what they should be doing with their life. “Caregivers get into their role because they started out as loving, caring people trying to do the right thing,” she says.

5. “You need to get a ‘real’ life.” As the old saying goes, “you’re preaching to the choir.” “Every caregiver understands that they need to get a life, have a plan, start making time for themselves,” Laverty says. But, telling a caregiver to “get a life” is like telling them that what they’re doing now (caring for a loved one) doesn’t matter.

6. “Why don’t you just put you mother in a nursing home? It would be better for everyone.” Laverty says that comments like this can make a caregiver feel like they’re not doing a good job taking care of their loved one. The reality is, a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they’re offering good advice, when they might really just (unintentionally) be making a caregiver feel guilty.

7. “Why do you visit your dad so much? He doesn’t even know you.” If a caregiver is taking care of someone who has Alzheimer’s or another form of dementia and lives in a nursing home, people may ask why they bother to visit someone who doesn’t even remember who they are. “People need human contact and love, or they will just shrivel up and die,” Laverty says, “Caregivers shouldn’t feel stupid for going to visit someone who doesn’t recognize them outwardly. As long as they know who their loved one is, that’s all that should matter.”

8. “Don’t feel guilty about…” When you’re a caregiver, “guilt just comes with the territory,” according to Laverty. Caregivers want to fix everything, to solve every problem, to ease every hurt, when the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.

9. “Let’s not talk about that. Let’s talk about something happy and fun.” When it comes to your average small talk scenario, caregivers generally don’t have a lot of “fun” things to contribute. Laverty says that people need to understand that people taking care of an elderly loved one need to talk about what’s going on. Friends and family members of caregivers should take the time to listen to what a caregiver has to say, no matter how “unpleasant,” or “unhappy” it is.

10. “You must be so relieved that it’s over.” When their elderly loved one dies a caregiver is likely to be facing a bunch of mixed up emotions. Relief may be one of those feelings, but Laverty feels that it’s probably not productive to point this out to a person who has just lost a parent, spouse, or sibling. “If you diminish the event, you diminish the life and effort of the caregiver,” she says.

11. “When are you going to get over it (a senior’s death) and move on?” Grief is an individual process. For some people, processing the death of a loved one will take some time. This is particularly true of caregivers, who’ve poured a significant amount of time and energy into taking care of the person who has just passed.

Tips for responding to callous comments

Conventional conversational courtesies tend to fly out the window when intense situations (like caregiving) and strong emotions collide.

Caregivers, according to Laverty, tend to have a heightened sensitivity. “Everything seems to affect you more than when you’re a normal person going to work and dealing with family, because you’re so on edge and trying to do a million things in a day,” she says.

It’s easy for stressed-out caregiver to take a well-intentioned comment or question the wrong way and snap at whoever said it. Laverty has a few general suggestions for caregivers:

1. Respond calmly to whatever is said.

2. If you’re hurt by someone’s question or comment, you can say “I know that you really care about me, but what you just said didn’t feel good, here’s why…”

3. Use hurtful comments as a way to ask for help. For example, you could say: “I’d love to figure out how to, ‘get a life.’ As my friend, would you be willing to sit down and brainstorm ways to help me balance being a caregiver and having a ‘real’ life?”

Conversely, friends and family members bear some responsibility for expressing their concern in appropriate ways. Laverty’s advice: “Think before you say something stupid.”

Interactions between caregivers and their family and friends have the potential to be helpful and fulfilling for both parties. When in doubt, following the Golden Rule and treating someone how you would like to be treated always works best. As Laverty says, “We get these packages that say, ‘Handle with care.’ Why don’t we make efforts to apply that to each other?”

For tips on dealing with specific remarks, see: “How to Respond to Insensitive Comments.” (www.agingcare.com/Articles/caregiver-responses-while-communicating-152082.htm)

“Tax Breaks for Caregivers”

I’ve been enjoying The Caregiver Space (thecaregiverspace.org), a blog for caregivers.  In a recent blog post, the author explains tax deductions and tax credits that might benefit caregivers of those with a long-term illness.  Most of the forms and worksheets listed are on the IRS website, irs.gov.

Here’s a link to the blog post:

thecaregiverspace.org/tax-breaks-caregivers/

Tax Breaks for Caregivers
The Caregiver Space – The Caregiver’s Toolbox
Posted by Cori Carl
Feb 8, 2017

Robin

Books about Dementia (recommended by members of FTD Support Forum)

The FTD Support Forum (ftdsupportforum.com) is an online support group for those dealing with frontotemporal degeneration, including progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS).  One of the moderators, Lea H, compiled a list of books on dementia recommended by group members.  The list is copied below (with Lea’s permission).  I’ve also provided the link on the off-chance that anyone is a member.

Robin

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www.ftdsupportforum.com/threads/list-of-books.28339/

Post on FTD Support Forum
by:  Lea H
October 6, 2015  (updated many times)

I compiled a list of books that have been mentioned by members on the forum. I could have missed some of them, but here is my alpha list:

BOOKS about DEMENTIA

A Curious Kind of Widow, by Ann Davidson

Alzheimer’s, A Love Story One Year in My Husband’s Journey, by Ann Davidson

Ambiguous Loss, by Pauline Boss

Contented Dementia, by Oliver James

Dementia Care at a Glance, by Catharine Jenkins, Laura Ginesi, Bernie Keenan

Dueling With Dementia, Not The Love Story We Planned, by Kate Fritz Leonard

Hard Choices For Loving People, by Hank Dunn

I Remember When, by Tracy Mobley  (children’s book)

Life in the Balance, by Thomas Graboys, M.D.

Losing Louann, by Clinton Erb

Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, by Deborah Shouse

Love, Laughter and Mayhem, by Cindy Keith, RN

Loving someone who has Dementia, by Pauline Boss

Measures of the Heart, by Mary Ellen Geist

Moving to the Center of the Bed: The Artful Creation of a Life Alone, by Sheila Weinstein

No Act of Love is Ever Wasted: The Spirituality of Caring for Persons with Dementia, by Jane Marie Thibault and Richard L. Morgan

Passages in Caregiving, by Gail Sheehy

Still Alice, by Lisa Genova

Suffering in Slow Motion, by Richard and Pamela Kennedy

Sweet Surrender: Awakening to the Riches of Dementia, by Holly Eburne

Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s, by Olivia Ames Hoblitzelle

The Art of Dementia Care, by Daniel Kuhn and Jane Verity

The Banana Lady and Other Stories of Curious Behavior and Speech, by Andrew Kertesz

The Other Dementia, by Katherine Nichols

The Selfish Pig’s Guide to Caregiving, by Hugh Marriott

The 36-hour day: a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life, by Nancy L. Mace, Peter V. Rabins

What if it’s not Alzheimer’s : a caregiver’s guide to dementia, edited by Lisa Radin and Gary Radin

Where’s My Shoes? by Brenda Avadian

Young Hope’s Hand Guide to Dementia, by Tracy Mobley

Young Hope the Broken Road, by Tracy Mobley

Your Turn, by Laura S. Brown, PhD

“Podcasts to help you get to sleep”

There’s a good blog post from today on “The Caregiver Space” (thecaregiverspace.org).  The author offers several podcasts to help caregivers.  These seem the most promising:

Sleep With Me – collection of podcasts
www.sleepwithmepodcast.com

Deep Energy
itunes.apple.com/ca/podcast/deep-energy-2.0-music-for/id511265415?mt=2

Daily Meditation Podcasts
www.sipandom.com

Orvis Fly Fishing Guide
itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=278930814

Here’s a link to the full blog post:

thecaregiverspace.org/podcasts-help-get-sleep/

Podcasts to help you get to sleep
Posted by Allison Powell
Feb 23, 2017
ABCs of ZZZs, The Caregiver Space

Robin