Alzheimer`s Disease/Dementia w/Lewy Bodies

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Question
Mom has been diagnosed with Parkinsons/Dementia along with her Chronic Pain.   Her hallucinations are escalating and becoming more and more dramatic.  Mom has had the rigidity and slow movement, loss of spontaneous movement for years.  We all thought it was related to her back pain.  It’s not.  She has the “fluctuations” in alertness – that’s why she can sound so coherent at times, especially when she’s around people, but she also has the frequent drowsiness, lethargy, time spent staring.  Mom is on Levadopa only (along with Cymbalta and Hydrochodone for pain).  She sees a neurological doctor who seems not to want to deal with the hallucinations, yet it is the hallucinations that are the most difficult to deal with at this point in time. She is able to dress herself with help, however her hands are curling.  She is very dependent on me yet is in denial that she cannot live alone anymore. What "stage" of dementia is this and how can I deal with this?  I am desperate for help

Answer
Good morning Sheryl:  I'm very sorry to hear of your Mom's decline.  My first thought is that you may wish to seek a second opinion from another neurologist.  There is a chance the hallucinations are worsened by the medications.  You will need to be very specific about how the hallucinations are impacting her care and her quality of life.  The denial is quite common and sometimes you can get around it by using the excuse that it's the only way the insurance company will pay for some help; or insist she do it for your convenience and not necessarily because she "needs" it (even though she does).  The doctor can reinforce that she must have 24/7 care as well--even so far as to write out a "prescription" you could then show her when she forgets.  It's not really possible for me to "stage" her dementia since there are so many other variables--you must ask the doctor since they would have much more information.  I don't think it's particularly helpful to always label them with a "stage."  They will fluctuate and bounce back and forth sometimes, so I just like to tell families to always be prepared to meet them right now, at this moment, wherever they are and interact with them according to how they are acting/responding now.  I highly recommend you join a caregiver support group as well--that will be a huge source of information, comfort and support for you.  If they have a Lewy Body support group nearby, that would be ideal, but if not, then joining a dementia support group will still be of great benefit to you and your family.  I wish you much luck Sheryl as you move forward with the many challenges with your Mom. Cindy  

Alzheimer`s Disease

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Cindy Keith, RN, BS, Certified Dementia Practitioner

Expertise

As a nurse and dementia consultant, I can answer most questions on all types of dementia. If I cannot answer your question, I will attempt to find someone who can. My passion is to help caregivers of people with dementia, which in turn helps all those wonderful elders with dementia live better lives. When caregivers are better educated, they are able to better care for themselves and their loved ones, so education is key to decreased stress levels and healthier, happier families.

Experience

I have worked as a nurse in various disciplines of nursing for over 20 years, most of which was with the elderly. I was a health care coordinator in a dementia dedicated assisted living facility for 4 years before I started my own business (M.I.N.D. in Memory Care) as a dementia consultant six years ago. As a dementia consultant, I help families nationwide through phone conference calls as they struggle to care for their loved ones with dementia.

Organizations
Alzheimer's Foundation of America Geriatric Interest Network Sigma Theta Tau International

Publications
Published "Love, Laughter, & Mayhem - Caregiver Survival Manual For Living With A Person With Dementia" which is a collection of stories about people with dementia I have known, loved and worked with. Every story has a lesson to teach and this book gently teaches family caregivers lessons about how to better care for their loved one, as well as themselves during their caregiving journey. Published "Love, Laughter, & Mayhem In Eldercare Facilities: The Master Key For Dementia Training" Created "Bringing Nurturing To Memory Care" staff dementia training video Created Ebook: "Hair Stylist's Helpful Tips For Working With People With Alzheimer's & Other Dementias"

Education/Credentials
Registered Nurse with Bachelor's degree in Nursing; Certified Dementia Practitioner; Author of 2 books and an ebook

Awards and Honors
Sigma Theta Tau National Honor Society of Nursing

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