10 Topics About Adult Children Caring for Aging Parents

The article on caring from aging parents is from Hinduism Today magazine.  It’s by a woman who has been caring for her mother for 19 years.

Yesterday, the moderator of the Link2Care email list posted a link to the article.  (Link2Care is an email-based discussion group for California caregivers.)  The moderator describes the author as “very perceptive” in terms of the parent-child relationship.

The author offers practical advice on ten topics, including financial matters, helping one parent (when the other has died), freedom vs. independence, driving, privacy, and acceptance.  Here are short excerpts:

You are still the child: Age seems to make no difference here. Kindness is needed after an adult care-giving child, age 67, has been reminded for the fourth time in 15 minutes to make sure that the front door is locked. Caring parents of any age seem to always take pleasure in making sure that their children are safe and prepared for any eventuality. Perhaps this keeps the mind of an aging parent keen, active and alert. It is wonderful to be so lovingly looked after.

Freedom versus independence: Having an aging parent is like raising a teenager, only in reverse. … Asking the parent questions like “Do you need my help? Can I help you?” might just be answered with, “No.”  It is better to ask, “How are you coming along with that? Be sure and let me know if I can help you.” Changing a few words in any sentence can set a more harmonious and comfortable tone.

Accept your parents as they are: Changing another person is simply impossible (it’s hard enough to change yourself!). If our aging parents annoy, disappoint or frustrate us, the only way that this can ever be turned around is for us, as adult care-giving children, to absorb our reactions within ourselves. Our aging parents are teaching us how to be aging parents. … Perhaps the most important thing to keep in mind is to treat our parents just as we hope to be treated in the future. 

 

Here’s a link to the full article:

HEALING
Living with Aging Parents
Kindness, compromise and tenacity are daily visitors as I look after my 94-year-old mom
Hinduism Today Magazine
by Damara Shanmugan
October/November/December 2013

Robin

 

 

Imaging Tau with PET Scans

Some news was released yesterday about using a PET scan to detect tau in the brain.  Tau is the protein involved in PSP and CBD.  Tau is one of the two proteins involved in Alzheimer’s Disease; the other is amyloid.

If I’m counting correctly, yesterday’s news is a third approach to detecting tau in the brain with a PET.  This third approach was developed largely by Japanese scientists.  The second approach was developed by UC Irvine and uses Siemens technology.  And the first approach was developed by UCLA but that approach seems to have no endorsement outside of UCLA.  (I was told by some local neurologists that the UCLA approach is a “non-starter.”)

The third approach was described in the journal Neuron yesterday.  Here’s a link to the abstract and the figures and tables from the article, but not the article itself:

www.sciencedirect.com/science/article/pii/S0896627313006612

From the abstract and highlights of the article, we know that the Japanese researchers used this PET imaging approach to illuminate tau tangles in mice with a tauopathy and in living Alzheimer’s patients, comparing them to normal controls.  They also saw tau illuminated in a corticobasal syndrome patient who did not have amyloid plaques, based on a different PET scan.

I believe this new tau ligand (or radioactive substance) is known as PBB.  This is very confusing because the amyloid ligand is known as PIB.

Below I’ve copied links to two very understandable lay articles on this tau imaging study — one from the BBC and one from Forbes magazine.  The angle in both of these articles is Alzheimer’s Disease as that’s where lots of research dollars are going.

Robin

———————————————————————————-

www.bbc.co.uk/news/health-24142691

Alzheimer’s brain scan detects tau protein
BBC News
By James Gallagher, Health and science reporter
18 September 2013

www.forbes.com/sites/alicegwalton/2013/09/19/new-brain-imaging-for-alzheimers-disease-may-kickstart-early-treatment-diagnosis/

PHARMA & HEALTHCARE
New Brain Imaging For Alzheimer’s Disease May Pave The Way For Earlier Diagnosis
Forbes
Alice G. Walton, Contributor
9/19/2013 @ 12:47PM

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

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

——————————————————————————–

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

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)

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

 

 

Two PSP/CBD clinical trials beginning in 8 months?

Local support group member Sharon Reichardt and I were on a conference call yesterday with Adam Boxer, MD, neurologist at UCSF’s Memory & Aging Center. Dr. Boxer shared the news that two clinical trials with experimental drugs are in the works for PSP and, hopefully, CBD.  He suggested that they may be announced in 6-8 months.  But all is quite tentative so we shouldn’t hold him to it.  These would both be single-site studies.

I asked Dr. Boxer if one of the trials would be for Rember.  He said “no.”  The experimental agents are both new.

The Davunetide trial started out at UCSF’s MAC, and then expanded worldwide. Both the Davunetide and Nypta clinical trials ended in failure last year.  So this is good news that researchers are still actively interested in research with PSP and CBD.

One reason pharmaceutical companies are interested in studying tau-related drugs in PSP (rather than in Alzheimer’s) is because those with the Richardson’s Syndrome type of PSP experience faster declines and more brain atrophy than Alzheimer’s patients in the same timeframe.

Stay tuned….

Robin

Move before there’s a crisis

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

 

5-Week Online Course in Dementia Care and Webinars Afterwards

Several local support group members sent me a link to an article from yesterday’s “New Old Age” blog in the New York Times.  (I faithfully read this blog as well.)  The article is about an online course in dementia care being offered at no charge.

The course starts on October 14, 2013, runs for 5 weeks, and is anticipated to take 3-5 hours per week of time.  Though the course is designed for healthcare professionals, anyone interested in dementia care may enroll.  “Some background or knowledge about caring for someone with dementia is helpful,” the co-instructors say in an introductory video.  Based on the title, it looks like the focus will be on Alzheimer’s Disease.

Here’s info about the course:

www.coursera.org/course/dementiacare

Care of Elders with Alzheimer’s Disease and other Major Neurocognitive Disorders
Instructors:  Nancy Hodgson, PhD, RN and Laura Gitlin, PhD, both with Johns Hopkins University

This is a state-of-the-art course designed to accommodate the learning needs of health professionals including nurses, social workers, psychologists, occupational and speech therapists, health care administrators and recreational therapists. It is also intended for students who are interested in learning more about dementia care. The 5 units provide an overview of Alzheimer’s Disease and related dementias and the impact on quality-of-life issues for individuals with dementia and their families. Emphasis will be placed on exploring innovations in care through an ecological model of dementia-care  throughout the trajectory of the disorder

Workload: 3-5 hours/week

Begins:  Oct 14th 2013 (5 weeks long)

At the link above, you can watch a 3-minute video introducing the course.

The “New Old Age” blog post has some helpful details.  See:

newoldage.blogs.nytimes.com/2013/09/05/online-lessons-in-dementia-management/

The New Old Age: Caring and Coping
Online Lessons in Dementia Management
The New York Times
By Judith Graham
September 5, 2013, 6:00 am

According to the “New Old Age” blog post, each class will be broken into 15-20 minute segments.  During the week of October 21st, Dr. Peter Rabins, author of “The 36-Hour Day,” will talk about assessing caregivers’ needs.  During the week of November 6th, Dr. Gitlin will review non-pharmacologic interventions to treat troublesome behavioral symptoms.  “After the course, Johns Hopkins will offer a series of Web-based seminars to caregivers and health professionals following up in more detail on the issues raised. Potential topics include safety in the home, activities for people with dementia and end-of-life care.”

Both the course and the follow-on webinars sound very worthwhile.  I don’t know if those actively caregiving can fit 3-5 hours per week into their lives, however.  If anyone participates, please share highlights or things you learned so I can share with everyone in our group.

Robin