Monthly Archives: January 2016

Definition of DLB (vs. PDD, parkinsonism)

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Group member Helen Medsger shared this blog post with me today.  She found it to be a well-organized definition of Dementia with Lewy Bodies.  The post, on Brain Blogger, is an explanation of the difference between Parkinson’s Disease Dementia and Dementia with Lewy Bodies, and of the difference between Parkinson’s Disease and parkinsonism.

See http://brainblogger.com/2016/01/18/dementia-with-lewy-bodies-an-underrated-disease/

Brain Blogger
Dementia With Lewy Bodies — An Underrated Disease
by Sara Adaes, PhD
January 18, 2016

Robin

“Family Caregiving Isn’t Easy: Emotional Management Tips”

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This article offers emotional management tips to family caregivers. See:

www.huffingtonpost.com/steve-landers-mdmph/family-caregiving-isnt-easy-emotional-management-tips_b_8923824.html

The Blog – Huffington Post
Family Caregiving Isn’t Easy: Emotional Management Tips
by Steve Landers, MD, MPH
Co-Authored With Michael Brustein, PsyD
Posted: 01/19/2016 8:27 am EST

This article’s authors (an MD and a clinical psychologist) note that “If you’re already experiencing emotional struggles and feeling distressed, you should promptly seek help from a primary care or mental health professional.” 

On the other hand, “If things are generally going well and you want to prevent or reduce the impact of potential emotional challenges,” the authors provide some tips for coping with caregiver anxiety, guilt, grief, and anger.

I especially liked this advice:  “Mourn the person who is no more, but engage with the person who is.”

Robin

 

 

Partnering with physicians, etc. (Dr. Nancy Snyderman)

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An interview with Dr. Nancy Snyderman was published in Today’s Caregiver.  (I couldn’t find a date on the interview.)  Dr. Snyderman is asked her advice for family caregivers when dealing with the healthcare system and partnering with physicians in particular.

See:

www.caregiver.com/articles/interviews/nancy_snyderman_interview.htm

This is a nice quotation of Dr. Snyderman’s:

“To me, caregiving is about quality of life as much as it is about length of life. And it is about letting the person who is being cared for have a piece of the decision-making when possible. Life with dignity and death with dignity are two things that we do not talk enough about.”

The interviewer asks Dr. Snyderman what is the one most important piece of advice you would share with a caregiver?  Her reply:

“I know that you are probably overwhelmed with all kinds of decisions. But I want you to know that as part of this process, be in the moment as much as you can. You are going to remember things that today may seem minute. But they are going to come back and be some of the greatest gifts in your life. And the other thing I would say is that you will find that as a caregiver, you take care of everyone on the planet and you are on the back burner; that is not sustainable. Taking care of yourself is not selfish. It is self-preservational. Find the time to do that. You will have more to give in the end.”

The interviewer also asks:  “What do you advise family caregivers when dealing with the healthcare system?”  Dr. Snyderman says:

“I think this is particularly true for women. The good manners that our mothers taught us that help us in social situations and open up doors and allow you to have a lovely conversation at a dinner party–those same manners do not serve you well when you are advocating for someone who needs help. I have witnessed it firsthand. I have been that pit bull. I have relied on people to be that pit bull for me. But the reality is the system is complex. It is intimidating. It is labyrinthine. And whether you are the caregiver or the person who is being cared for, it is just downright complicated.”

In the interview, Dr. Snyderman refers to a for-profit business she started, CarePlanners.com.  This company provides services to family caregivers.

Robin

 

 

 

LBD is mentioned a couple of times in this story

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“The End” is a series in the New York Times about end-of-life issues.  As I was reading over the latest installment, I noted that the story is about a woman with Lewy Body Dementia.

LBD and its symptoms are only mentioned twice in the story:

“Visiting her in Florida, I noticed increasing balance problems and short-term memory lapses, early signs of Lewy body dementia.”

“For the last two years of her life, she was bedridden with advanced Lewy body dementia and a broken hip. Her eyes were closed most of the time, her body shuddering from jerky, involuntary movements. At least she wasn’t aware that her hands were sheathed in gloves to calm her, or how she was sedated to allow caretakers to bathe her and change her diapers.”

For the full article, see:

opinionator.blogs.nytimes.com/2016/01/13/my-motherless-mother/

The End
My Motherless Mother
The New York Times
By Candy Schulman
January 13, 2016 4:45 am

Robin

 

Accepting Elders’ Opinions/Wishes While Caregiving

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Over the holidays, my husband and I found ourselves dealing with two elderly family members with mild cognitive impairment and dementia (maybe vascular).  So I’ve been doing some reading on related topics.

I came across this nice article today on AgingCare.com, which may be of interest to adult children who are communicating with aging parents:

www.agingcare.com/Articles/balancing-safety-with-independence-193276.htm

Learn to Back Off and Accept Risks While Caregiving
AgingCare.com
January 04, 2016

The author of the article wrote the well-titled book “Minding Our Elders.”

This sentence range true for me:  “Anxiety over our elders’ safety can turn adult children into dictators.”  There was definitely an adjustment period in helping my father cope with neurological decline.

And this sentence brought up a lot of thoughts as well:  “It may mean biting our tongues while our parents enjoy taking a few risks.”  I always found it hard to bite my tongue, though, when it came to the risk of falls.

Robin