Category Archives: Caregiving – General

Neuropsychologist talks about resilience in PD (16 minutes – online audio program)

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This post has some tips from a neuropsychologist on developing resilience.  These tips may be of interest to caregivers and those with neurological disorders.

Last year at a July caregivers symposium we helped organize, the keynote speaker focused on resilience.  I think this is a very important topic for us all.  The speaker said that resilience can be learned:  yes, we are born with some basic resilience but we can all learn to expand our resilience.  And the speaker said that social isolation is as deadly to us as smoking is.

Somehow I got put on the email list for Voice Aerobics, which is a Florida-based company that focuses on Parkinson’s Disease (PD).  About a month ago they started using “blog talk radio” as a way to reach a large audience with info about PD and PD organizations.

A recent 30-minute program is on the topic of resilience, with a neuropsychologist, Dr. Jeffrey Wertheimer, speaking.  Though the focus is on Parkinson’s disease (and a survey done with 825 people with PD), I think all of what the neuropsychologist said applies to the four disorders in our support group.  He also believes that we can become more resilience through coping strategies.  One such strategy is not to be isolated.

Here are some highlights of what Dr. Wertheimer said:

  • Resilience is more than a personality trait.  There are tools, strategies, and learned experiences that can help create a sense of resilience.
  • As Parkinson’s progresses, the symptoms may chip away at the feeling of resilience. It’s important that we are aware of this.
  • We need to ask people “did you have your mental health moment today” just as we ask people if they took their medication or did their exercises.
  • Be proactive.  Engage in activities such as exercise.
  • Regard Parkinson’s Disease obstacles as challenges to overcome rather than a hopeless barrier.
  • Learn about illness.
  • Engage in life – hobbies and pleasures.
  • Externalize the distress by sharing it with a psychologist, support group, or friends.

I took a few notes while I was listening, and have copied these below.

Robin

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www.blogtalkradio.com/voice-aerobics/2013/08/23/parkinsons-and-resilience-got-it-get-it

Parkinson’s and Resilience: Got it? Get it!
by Voice Aerobics Talking 2 You
30:13 minute program

Robin’s notes from when Jeffrey Wertheimer, PhD, neuropsychologist, is speaking (from about 10:45 to 27:00):

12:05
Defines resilience as a dynamic process whereby individuals cope with and adapt or adjust to stress, challenge, medical illness, or any sort of adversity.

The usual focus is on “what’s wrong.”  Those with Parkinson’s Disease (PD) and their families focus on debilitating symptoms.  We need to also look at what’s going well.

13:55
Asks “how do we get more resilience?”  How we respond to challenges is influenced by personal strengths and resources.  Do we have a positive attitude?

How can we be proactive in coping?

15:00
He talks about the survey on coping.  Intentionally look for ways to live life fully.  Develop a positive attitude.

15:55
Catchy phrase:  where the attention goes, the emotion flows.  The more we focus on adapting, the more resilient we are.

18:00
Discusses depression in PD.  There can be a biological element to depression and anxiety.

20:00
Resilience is more than a personality trait.  There are tools, strategies, and learned experiences that can help create a sense of resilience.

As PD progresses, the symptoms may chip away at the feeling of resilience. It’s important that we are aware of this.

We need to ask people “did you have your mental health moment today” just as we ask people if they took their medication or did their exercises.

Be proactive.  Engage in activities such as exercise.

Regard PD obstacles as challenges to overcome rather than a hopeless barrier.

Learn about illness.

Engage in life – hobbies and pleasures.

Externalize the distress by sharing it with a psychologist, support group, or friends.

26:00
If people have greater levels of support, they have greater levels of perceived resilience.  If someone is isolated, they may be struggling.

Helping Someone Who Is Grieving, and Helping Yourself Through Grief

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Susan Weisberg, LCSW, is a social worker in the Bay Area who has worked with hospice for many years.  She recently introduced me to the organization Resources for Grief (resourcesforgrief.com), which sells materials to hospice agencies and others.

Resources for Grief has two companion pieces on its website that are intended for  individuals rather than hospice agencies.  One is on helping someone who is grieving, and the other is helping yourself through grief.  Grieving is described as a “lengthy journey” for which we all need support.  The resources make clear that while death ends life, it doesn’t end our relationship to the person who has died.

Here are a few excerpts from “Helping Someone Who Is Grieving”:

  • Your presence is more important than anything you say. 
  • Make specific and practical offers to help, such as, “Let me pick-up some groceries for you when I’m at the store,” rather than, “if there’s anything you need, give me a call.”
  • Don’t try to lessen the loss with easy answers–“It’s God’s will,” “They’re better off now,” “God needed a little angel in heaven,” or “There must be a reason.”
  • Remember special days–holidays, birthdays, anniversaries. Mark them on your calendar.

Here’s a link to all the great suggestions in “Helping Someone Who Is Grieving”:

resourcesforgrief.com/HelpingSomeoneWhoIsGrieving.pdf

Helping Someone Who Is Grieving
Resources For Grief
Copyright 2007

And here are a few excerpts from “Helping Yourself Through Grief”:

  • Provide Gentle Self-Care when Grief is Fresh.
  • Accept Your Feelings.
  • Care for Your Whole Being–Body, Mind, and Spirit. 
  • Seek Ongoing Support. 
  • Embrace the Memories. 

Here’s a link to the ten tips in “Helping Yourself Through Grief”:

resourcesforgrief.com/HelpingYourselfThroughGrief.pdf

Helping Yourself Through Grief
From “The Nature of Grief: Photographs and Words for Reflection and Healing,” by Rebecca Hauder
Resources For Grief

Robin

Seven Suggestions When Interacting With Person With Dementia (or Neurological Disorder)

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Recently, I came across a website by Stan Goldberg, PhD — stangoldbergwriter.com.  The website is about “aging, caregiving, dying, and recovering joy” (maybe not in that order?).

Dr. Goldberg is a retired professor from SF State, and was a hospice volunteer for eight years.  He has published several books including “Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life” and “Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.”

In a 2011 article on his website, he offers suggestions of “some things to consider the next time you interact with a person who has or you suspect has dementia.”  Dr. Goldberg’s seven suggestions include:

  • Be Patient.
  • Memories are not willingly lost.
  • Accept changes.
  • Offer help to the person.
  • Offer Help to the Caregiver.
  • You live in different worlds.
  • Be Compassionate.

He asks that we give our best to a person we once knew as gregarious or capable of interacting with us:  “Enjoy their presence while you still can and offer them the support and compassion you would want if it was you who were slowly moving on a one-way road to a strange, structureless place.”

Most of the seven suggestions apply to those without dementia who may need our compassion or help.

Here’s a link to Dr. Golberg’s webpage:

stangoldbergwriter.com/about/its-only-alzheimers-not-the-bloody-plague/

“Some things to consider the next time you interact with a person who has or you suspect has dementia”
Excerpted from “It’s Only Alzheimer’s, Not the Bloody Plague!”
by Stan Goldberg, PhD
July 2011

Robin

 

 

Move before there’s a crisis

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In this New York Times “New Old Age” blog post, the author discusses the importance of moving before there is a crisis.  Jane Gross had given this advice to many adult children in reference to their parents.  In this blog post, she is giving the advice to herself and taking it!

Here’s an excerpt:

As just about everyone who has cared for an aging parent knows, getting old is both an inexorable and maddeningly unpredictable forward march. Everything is OK. Then it’s not. Then it is again. What felt early on like a roller coaster becomes the new normal. In between swerves and plummets, it is almost possible to doze off.

And planning for all possible eventualities is useless — after the essential documents are in place, the family has talked openly and often about end-of-life wishes, they understand the difference between Medicare and Medicaid, they know how much money is available and that it is probably not going to be enough.

Caregivers and their elderly charges both know, in a spoken or unspoken way, that on the horizon is The Crisis. That’s the one that demarcates “before” and “after.” Your parents are at home, say, when they really shouldn’t be, and don’t want to leave. The Crisis, when it appears, will be an awful milestone for them and probably so for you, the adult child.

Then one day the roles shift and the crisis on the horizon could be yours. Maybe your parents are dead or maybe not, but you’re now an old person. It happens even if you’re diligent about antioxidants and fish oil, exercise both body and mind, have a cheery attitude, good genes and a wide social network. If you’re not there yet, you’ll have to take my word for it.

So this is put-up-or-shut-up time. I either take my own hard-won advice or I’d better stop dishing it out.

“Don’t wait for a crisis.”

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2013/09/10/getting-while-the-getting-is-good/

New Old Age/Caring and Coping
The New York Times
Getting While the Getting Is Good
By Jane Gross
September 10, 2013 11:30 am

This is well worth reading!

Robin

 

Hospital Surgery Ratings

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Last week I paid for access to Consumer Reports magazine to get washer/dryer ratings.  While I was at it, I looked to see what else was available.  In the September 2013 magazine, hospitals around the US are rated in terms of “avoiding adverse events in Medicare patients during their hospital stay for surgery.  Specifically, the Ratings are based on the percentage of a hospital’s surgery patients who died in the hospital or stayed longer than expected for their procedure.”

“The analysis looked at Medicare claims data from 2009 through 2011 for patients undergoing 27 categories of common scheduled surgeries.  For each hospital, the results for all procedures are combined into an overall surgery Rating. …[Some] hospitals themselves use this approach to monitor quality.”

The ratings are 5 levels from “Better” to “Worse.”

In Northern and Central California, these hospitals received a “Better” overall surgery rating:  (in alphabetical order)
Enloe Medical Center, Chico
French Hospital, San Luis Obispo
Fresno Heart and Surgical Hospital
Fresno Surgical Hospital
Mercy Medical Center Redding
Oroville Hospital
Sacramento Medical Center
Sequoia Hospital, Redwood City
Shasta Regional Medical Center, Redding
St. Helena Hospital Napa Valley, St. Helena
Sutter Lakeside Hospital, Lakeport
Sutter Surgical Hospital – North Valley, Yuba City
Washington Hospital, Fremont

These hospitals received the next rating lower than “Better”:
Alta Bates Summit Medical Center, Berkeley
Alta Bates Summit Medical Center – Summit Campus, Oakland
Bakersfield Heart Hospital, Bakersfield
Clovis Community Medical Center, Clovis
El Camino Hospital, Mountain View
Mercy General Hospital, Sacramento
Mercy Hospitals of Bakersfield, Bakersfield
Methodist Hospital of Sacramento
Sierra Nevada Memorial Hospital, Grass Valley
St. Elizabeth Community Hospital, Red Bluff
St. Joseph Hospital, Eureka
St. Joseph’s Medical Center, Stockton
Stanislaus Surgical Hospital, Modesto
Sutter Amador Hospital, Jackson
Sutter Auburn Faith Hospital, Auburn
Sutter Davis Hospital, Davis
Sutter Medical Center, Sacramento

See consumerreports.org/hospitalratings for:

  • an article on “How Safe is Your Hospital”  (available at no charge)
  • “Your Safer-Surgery Survival Guide”  (available at no charge)
  • rankings for 2463 hospitals in the US.  Ratings are for 5 procedures including replacement of the hip or knee and angioplasty.  And there are scores for safety, bloodstream infections, avoiding readmissions, drug information, and adverse events.  (there is a fee to see the info)

Robin