Monday, September 3, 2012

The Faces of Caregiving: Kathy - Lewy Body Dementia

Caregivers are everywhere. Caregivers are people who might be in line with you at the grocery store, next to you at the doctor’s office or sitting a few pews behind you in church.

They might be that person in the slow lane you’re cursing because they seem distracted (sorry).

When buying protective briefs for Robert, the cashier at CVS told me his dad was a caregiver for his grandfather. He then shared a tip about what brand worked best for them (Tena was their favorite).

That’s one of the many things I love about caregivers – the willingness to help and share information with others.

While caring for Robert and reaching out to other caregivers, I’ve met some amazing people. Each story is different but there is a recurring theme: advocacy. Aside from caring for a loved one, these people have taken the time to help others.

In this series on family caregivers, I’d like you to meet a few of those individuals who not only are caring for a family member but who are also vocal advocates.

Today, we meet Kathy who cares for her husband who was diagnosed with Lewy Body Dementia in 2007. Kathy blogs on and on her website, Living with a Thief Named Lewy Body Dementia. Her website was recently chosen by Healthline as one of the 25 Best Alzheimer’s Blogs of 2012. Congratulations, Kathy!

Kathy answered a few questions for us about her caregiving experience and her advocacy work. Please contact Kathy through her website if you have questions about her experience or about Lewy Body dementia.

Robert’s Sister:   Tell us about your caregiving situation.

Kathy:  I'm Kathy a 49 (maybe 50 by now) year old spousal caregiver. My husband, affectionately referred to as Hubby, was diagnosed with Lewy Body dementia in 2007. (Note from Robert’s Sister: Happy Birthday, Kathy!)

Robert’s Sister:  Tell us a little bit about the disease your Hubby is facing.

Kathy:  What is Lewy Body Dementia, you say?  Well I'm glad you asked. It's the second most common form of dementia after Alzheimer’s and the most commonly misdiagnosed because it has symptoms similar to Parkinson’s and symptoms similar to Alzheimer’s yet needs to be treated differently in a lot of ways. Why is it so often misdiagnosed? Another good question! Apparently not too many people have heard about it. Until Hubby's diagnosis I never heard of it and I've been surprised by the number of health care professionals that have never heard of it so I'm always happy to teach them. Here's a link if you would like to learn more about it.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Kathy:  For me, the biggest obstacle I've faced is balancing Hubby's independence and dignity with his safety. My head and heart still juggle and struggle with the facts that this is still a once independent and proud grown man. My husband, the head of our family. And now he needs 24 hour care and attention due to his confusion and loss of life skills.

Robert’s Sister:  How did you overcome that obstacle?

Kathy:  Hmm, to start with I am a woman of Christian faith so I pray A LOT! I remind myself that Hubby's safety comes first and foremost. I've had to learn to be emotionally forceful in my decisions concerning him. It's taken a lot of prayer to get through some of those difficult decisions. I'm still learning though so I guess I'm less overcoming and more getting through.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Kathy:  I haven't really gotten highly involved in any organizations like the Lewy Body Dementia Association or the Alzheimer’s Association. As Hubby's 24 hour caregiver it's difficult to leave the home and participate in outside activity. All of my involvement is on line. The biggest thing I'm involved in is caregiver support. I'm involved in an on line spousal support group for Lewy Body. It's my "go to" for "in the trenches" caregiving. The reality is that spousal caregiving is very different than other family or friend caregiving. There are certain intimate struggles we face that many are not comfortable in sharing publicly.

I also found a home on A place for caregivers of all kinds, spouses, children, partners, friends with various caregiving needs, not just dementia. I've enjoyed the "family" feel there and have made some friends I feel very close to. The support we offer and receive is exceptional and in my own opinion, beyond compare. Like I said, family, all uniquely different, yet all the same in needing and supporting each other. That's how we met.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Kathy:  I originally stated keeping a journal of living with Lewy Body Dementia. More as a way to chronicle what was happening with Hubby for the doctor but also as a way to "self help" me and my feelings. I had searched for information about Lewy and found little to no information as to what we were dealing with on a daily basis. I was able to find some technical information about it but I wanted to know how to get through the challenges, what did someone else do? So I decided to blog about our lives, the struggles and challenges, the joys and the laughter. What worked, what didn't. Real life stuff. I wanted to share with anyone that was searching for the same thing I was. I wanted to use this experience to reach out to others and let them know they were not alone. After consulting with my (adult) children and getting their feedback, I think it was a great decision.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Kathy:  I started blogging (read above answer), on a small personal blog and larger scale. I also print off and share information about Lewy Body Dementia that I happily and sometimes pushily (can I make that a word today?) share with anyone from home health aides, nurses, doctors, emergency personnel or just about anyone within paper shoving distance. I'm not shy.

I was asked to participate in the CareGifters Book series so I'M IN PRINT! Autographs on request dahling (adjusts big sunglasses) ;-)

I like the fact that all the proceeds of these books go into a fund for caregivers and when a caregiver has a need they can apply for the fund and receive $500 toward that need. I feel like it's my way of helping more caregivers.

Robert’s Sister:  Is there anything else you want people to know?

Kathy:  I like chocolate. Umm I guess that's not what you were asking, was it? (Note from Robert’s Sister: no, but good answer!).

But seriously, yes I would like people to know that once you've met one person with dementia, you have met one person.

Dementia isn't about forgetting or losing just your memories. It isn't as if the memory slipped away to later be retrieved, it's about losing them completely along with your life skills. It's a disease of the brain that slowly removes all traces of anything the person knows. Even though the person with dementia may seem to not be there, they didn't disappear, they are still locked inside the disease. They still deserve respect, to be treated with dignity and acknowledged.

Also know that yes, dementia is very sad and there are a vast many struggles associated with it, but there are also very good days. Try to find something good in the day even if you must seek it. The more you look, the easier it is to find.

Robert’s Sister:  How can people contact you if they want to learn more about Lewy Body Dementia?  

Kathy:  I love people and I'm happy to share what I know (sometimes perhaps too much).

I can use all the prayer warriors, well wishes, finger crossers and pixie dust sprinklers I can get. My personal blog is or you can find me on Also, I'm a Facebook junkie and you can see me at I also tweet but I am NOT good at it. Somehow I can't get in the groove of it at

Hey, Thanks for having me, Trish!! I appreciate the opportunity to share a little about Lewy Body Dementia. I've enjoyed spending time with you and your readers. You have a lovely group of friends here.

Robert’s Sister:  Many thanks to Kathy for her time and willingness to share her experiences! 

Next, we will meet G-J who cares for her husband, Steve who was diagnosed with early onset Mild Cognitive Impairment (MCI).

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