Monthly Archives: April 2017

Be prepared to answer “What are your goals for your care?”

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Be prepared to answer “What are your goals for your care?”

This Washington Post article from a couple of years ago is circulating again.  The article is titled “A doctor discovers an important question patients should be asked.”  The important question is:  what are your goals for your care?  I think this is a great question we should ask ourselves before we ever set foot in a doctor’s office.  If we are prepared to ask and answer that question at the beginning of every doctor’s appointment, perhaps we’d have more control over our own care and perhaps the outcome.

Here’s a link to the full article:

washingtonpost.com/national/health-science/how-i-discovered-an-important-question-a-doctor-should-ask-a-patient/2015/03/09/ca350634-bb9c-11e4-bdfa-b8e8f594e6ee_story.html

Health & Science
A doctor discovers an important question patients should be asked
By Mitch Kaminski
Washington Post
March 9, 2015

Robin

 

Son Joey’s video chronicles of his mom’s LBD journey

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Son Joey’s video chronicles of his mom’s LBD journey

Molly Daley was diagnosed two years ago with Lewy Body Dementia at the age of 65.  Her son Joey, who is her caregiver, is chronicling her decline via a video blog (“vlog”).  Joey makes a video with his mom every time he picks her up from the nursing home where she lives.  “He hopes his videos will spread awareness of dementia and inspire people to hold on to their loved ones while they can.”

Unlike many with LBD, she has difficulty remembering events and recognizing people.  (It could be that she has Alzheimer’s as well as LBD as they frequently co-occur.)  Molly cannot perform some daily tasks, like brushing her teeth.

Here’s a link to a short Yahoo!News story about Joey’s vlog:

facebook.com/yahoonews/videos/10154156641171371/

And here’s a link to Joey’s 28 “episodes” with his mother:

youtube.com/channel/UCNIXVpLqgOOKKdNpPwvECzA

Have a tissue handy,
Robin

 

“Guilt vs. Grace” – extending grace to ourselves (caregivers)

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“Guilt vs. Grace” – extending grace to ourselves (caregivers)

Here’s an excerpt from a short post on The Caregiver Space (thecaregiverspace.org):

“As caregivers, we show up every day. … Sometimes we do it well — other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should — or somebody else thinks we should. … Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.”

Here’s a link to the post:

thecaregiverspace.org/guilt-vs-grace/

Guilt vs. Grace
by Peter Rosenberger
The Caregiver Space
Apr 11, 2017 

Robin

PSP mentioned on “Chicago Med” TV show

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PSP mentioned on “Chicago Med” TV show

I received this email on Sunday from Storme, one of the founding members of our local progressive supranuclear palsy (PSP) support group:

You’ve probably already heard this, but I was watching last week’s “Chicago Med,” and one of the patients had PSP!  Her diagnosis was sort of secondary to her personal story; she was afraid her boyfriend would vamoose upon learning she would “lose swallowing, speech and brain function.”  So nothing especially helpful, but I was pleased to hear it mentioned on a popularly-watched TV show nonetheless.

“Caring for Aging Parents – Difficult but not Impossible”

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“Caring for Aging Parents – Difficult but not Impossible”

A friend recently asked for advice on having “the conversation” with her father about his needing care soon.  I was sharing some of my favorite articles with her on this topic, and came across this one, which I don’t think I’ve shared here.  Though this article is from the website Free Alzheimers Support (free-alzheimers-support.com), it is not about caring for parents with dementia.  The article is dated “09/02,” which I’m guessing means September 2002.  In that case, it’s old but still has good advice.

The key points:
* have the conversation in advance
* watch for signs around the house
* ensure finances are under control
* watch for poor nutrition, injuries, or depression

Here’s a link to the article:

www.free-alzheimers-support.com/wordpress/caring-for-aging-parents-is-not-impossible/

Caring for Aging Parents – Difficult but not Impossible
Author: Edward Francis and Foresthc.com
Free Alzheimer’s Support
09/02

Robin