Category Archives: Caregiving – General

It can take two to three years to recover from bereavement

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It can take two to three years to recover from bereavement

Though this article focuses on losing a spouse, I think the information applies to adult children losing a parent as well.  Bottom line from the research being reported on in this article is that it can take two or three years to recover from bereavement.  In our local support group, this is what we’ve generally seen as well.

This recent New York Times article addresses new research that calls into question the notion that “after a brief period of sometimes intense bereavement, the vast majority of surviving spouses adjust well, returning to their previous work, daily routines and prior state of contentment within a few months to a year – a psychological outcome referred to as resilience.”

The new research suggests:  “Scratch the surface and you’re likely to find that the surviving spouse who seems happy and well adjusted may have considerable difficulties that are not apparent to a casual observer. … [It] can take two to three years or even longer for some to recover from bereavement [and return] to their pre-loss levels of functioning.”

Two Arizona-based psychologists used data gathered over 13 years in Australia.  During the 13-year study, 421 participants lost a spouse.  As the article notes, “Of the entire group, only 8 percent of the bereaved individuals were in good shape for all five indicators of resilience studied, while 20 percent were not resilient in any of them.”

The psychologists “described three factors that influenced overall resilience:

1) Reliable comfort – having someone to confide in or lean on in times of trouble, and being able to get help from other people when needed;

2) Social connectedness – whether their physical health or emotional problems interfered with social activities like visiting friends and relatives and interacting socially with neighbors or groups, and

3) Daily functioning – having difficulties with their normal activities because of emotional problems like depression or anxiety.”

The researcher found that what helped the bereaved spouses the most “was remaining socially connected and engaged in the usual activities of everyday life and knowing where they could turn for help and comfort and receiving support when they needed it.”

Here’s a link to the NYT article:

www.nytimes.com/2016/09/27/well/family/when-a-spouse-dies-resilience-can-be-uneven.html

Personal Health
When a Spouse Dies, Resilience Can Be Uneven
New York Times
By Jane E. Brody
Sept. 26, 2016

Robin

Family-centered approach to health care

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Family-centered approach to health care

Judith Graham writes a “Navigating Aging” column for Kaiser Health News.  Last Thursday’s column is based on a report on family caregiving from the National Academies of Sciences, Engineering and Medicine.

The chair of the panel authored the report says:  “Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked.”  So true!

The panel calls for a family-centered approach to health care that recognizes the important contributions of family caregivers.  You can find the report “Families Caring for an Aging America” here:

www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx

Last Thursday’s “Navigating Aging” column details six recommendations for our health care system — from the point of view of family caregivers — that are extrapolated from the report’s findings.  Ms. Graham describes these as a “practical to-do list for family caregivers”:

1- Your identity needs to be documented in your loved one’s medical records.
2- Your capacity to provide care to a loved one should be assessed.
3- Your capacity to provide care should be incorporated into your loved one’s care plan.
4- You should get training in medical tasks for which you’ll be responsible.
5- You should be connected with community resources that can be of help.
6- You should be given access to medical records and information.

You can find the column about the to-do list here:

khn.org/news/a-practical-to-do-list-for-family-caregivers/

Probably this is enough for most of you…

Robin

Six Stages of Caregiving

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Six Stages of Caregiving

This online collection of videos and articles on the six stages of caregiving is packed with recommendations.

“The Caregiving Years: Six Stages To A Meaningful Experience,” by Denise Brown, is published on CareGiving.com.  You can find an introduction to these online videos and articles here:

www.caregiving.com/the-caregiving-years/

(On that Introduction webpage, the links to the two tip sheets didn’t work for me.)

Brain Support Network volunteer Denise Dagan evaluated this resource and says that this information “may be helpful for those of you who are very organized and find your stress reduced by being prepared for nearly every possibility.”  Denise concludes that there are lots of good recommendations in the discussion of the six stages of caregiving, though she notes that there’s no mention of anticipatory (or preparatory) grief.

In videos and articles, Ms. Brown describes the six stages of caregiving, with trademarked terms as to the type of caregiver present in each stage.  And she provides a key word for each stage.  The stages and key words are:

Stage 1 – The Expectant Caregiver:  you anticipate someone you know will be in need of your assistance in the near future.  Learn to “Ask” questions of every professional, other caregivers, even your caree. You may be surprised by answers.

Stage 2 – The Freshman Caregiver:  you’ve just begun helping someone on a regular basis, if even casually (errands, bill paying, etc).  “Find” solutions for your caree.  Even in failed solutions, you have learned something.  Keep looking and trying until you find what works.

Stage 3 – The Entrenched Caregiver:  your involvement with your caree is almost daily – if not constant.  “Receive” help, support and comfort whenever offered for either caree or yourself, even if you think you are the best possible caregiver.

Stage 4 – The Pragmatic Caregiver:  you’ve been through it all: hospital stays, rehab, an array of community services and healthcare providers.  “Welcome” forgiveness of those who fail to help or make things difficult. Don’t waste any more time or energy on anger or resentment.

Stage 5 – The Transitioning Caregiver:  you’ve been caring for a period of time and now can sense the end.  “Allow” the experience at the end of your caree’s life to happen. You move from doing to just being with them. Consider hospice early.

Stage 6 – The Godspeed Caregiver:  caregiving has ended.  “Treasure” what you did during caregiving, how meaningful and purposeful the experience was, and your growth as a person.

BSN volunteer Denise shares a few things you may want to know about the videos, articles, and navigating the website:

First, the series starts with an introduction which has all six articles – with their related video links, at the bottom of the page.  You may be a bit overwhelmed by how many recommendations there are in each article, especially in the first three stages of caregiving.  Ms. Brown has really not left anything out in creating a list of all the things a caregiver should inform themselves about, including their own self care.

I recommend reading it through once.  Then, go back and find any action items that apply to your situation.  Take the time to do one or two of them and come back to the articles when you’re ready to add a new task.  Alternately, you could print the article that applies to your stage of caregiving and work through the list in your own time, returning to the next article when you’re ready, although there are links in the articles you may find useful while working through the recommendations.

Second, the videos are embedded YouTube screens with advertising banners over her face.  You don’t need to see her to appreciate the content, and you can delete the ads by clicking on the tiny x in the upper right corner of the ad banner at any time, without disturbing the video.

Third, after you watch a video, it is not clear that you have to click above the video on “The Caregiving Years, Six Stages to a Meaningful Journey” to continue to the next article.  That takes you back to the introduction page, where you scroll down again to get to the master list of all articles and videos.

Fourth, Ms. Brown has an associated audio webinar in two parts that explains how she came up with the six stages of caregiving and outlines each stage on the screen along with audio.  The first is nearly one hour, and the second is 36 minutes.  I find her style very impromptu and somewhat repetitive (with some pauses in her speech so long I thought I’d lost my computer connection!) but there are some nuggets of wisdom in there, if you have the patience.

Finally, if you aren’t familiar with CareGiving.com, this website has a large community section with several live chat options, online support groups and forums.  I haven’t checked them out, personally, but I thought you should all know they are there.

 

Videos on Caregiver Anger, Guilt, Depression, and Grief

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Videos on Caregiver Anger, Guilt, Depression, and Grief

Recently I stumbled across the website CaregiverHelp.com.  CaregiverHelp.com is founded by Elaine Sanchez, who has authored a book about being a caregiver, and her husband Dr. Alex Sanchz, a lifelong educator.  This website has lots of useful and entertaining five-minute videos on caregiving topics such as caregiver anger, guilt, depression, and grief.  I liked the title of one of the videos — The 3 F’s of Flipping Out.  (The 3 F’s are fear, fatigue, and frustration, by the way.)

You can find a link to the videos here:

www.caregiverhelp.com/caregiver-videos-m1s1/

Each “module” of videos has an online workbook that you can view and print.

Recently Brain Support Network volunteer Denise Dagan looked over the videos.  Here’s what she has to say…

I highly recommend these videos!

The videos start with a self-assessment to see whether you, as a caregiver, are suffering caregiver burnout.

Then, they explain caregiver stress can shortening your life by 10 years!  You may have heard long-term caregivers often die before the person they’re caring for.  The lessons in this video series will teach you how to cope with the stress as well as is humanly possible, and even become a stronger person.

They teach a simple 3-step process that can be applied to every concept the series covers — anger, guilt, depression, and grief.

Step 1 – Awareness:  Identify specific issues that upset you.  Most efficiently by writing it down.

Step 2 – Acceptance:  This can be hard because we often think there is a solution, but sometimes we have to accept there is nothing we can do.

Step 3 – Action:  Either try some (or all) of the options suggested in each video and worksheet, or learn to let it go.

Each concept (anger, guilt, depression, and grief) has its own module of videos and worksheets to print.  These short writing assignments walk you through the three steps as they apply to each concept.  It’s brilliant because you’re learning a single tool you are able to apply to all types of challenges commonly, and repeatedly, encountered by long-term caregivers.

The last two modules are informative and action-centered:

“Dementia Issues, Caregiver Support for Sex, Violence and other Dementia Issues,” outlines some challenging behaviors and provides insights into how to adjust and adapt to help someone who has suffered those changes, including the basic Do’s & Don’ts.

“Self-Care, a Survival Plan” has 8 worksheets and several videos outlining specific ways to reduce stress, such as:

– Arrange respite

– Ensure you have the proper medical equipment on hand

– Find humor everywhere

– Say goodbye before its too late

– Watch the module 5 videos about preparatory grief

– Understand you only have control over your attitude

– Nurture your spirit

– Reminisce with family

– Stay social

– Get some exercise

– Choose healthful food.

Whether the issues that upset you are caused by other family members, the medical community, or the disease itself, these videos, the information provided, and the tools they teach will help you manage the sometimes overwhelming feelings that are inevitable for long-term caregivers.

Denise

When Should You Become Your Aging Parent’s Health Care Advocate?”

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When Should You Become Your Aging Parent’s Health Care Advocate?”

This post may be of interest to adult children who may need to step in and help a parent with health care at some point.

This post is about an article on Next Avenue titled “When Should You Become Your Aging Parent’s Health Care Advocate?”  Brain Support Network volunteer Denise Dagan reviewed the article and shared her insights below.  Take it away Denise….

This article faces the reality that as an adult child, if your parents are still living, they will probably need you to step in and help with their health care, at some point.  These responsibilities often start off small, but may increase, so it is best to plan for the future with your parent(s), sooner than later.

Have a conversation covering parents’ end of life preferences.  Remember that your concerns may not be their concerns.  You should review legal documents, understand their insurance coverage, and know the plan to care for their chronic medical conditions.

As an adult child you are usually able to be in the exam room with your parent (although they may need to sign a HIPAA release, especially if you want to make inquiries about their health over the phone) but to guarantee it, have your parent(s) name you as durable power of attorney (POA) for healthcare.  That way, “you have legal leverage.”

Finally, there is a really complete list of tips on being well prepared for every medical appointment, even pointing out you don’t need to ask the doctor (or specialist) everything.  There are pharmacists, nurses, physician’s assistants, etc. who can often be very helpful because doctor appointments are very short.

One tip from me – my doctor once said he is putting in my chart to always schedule me for double appointment time because I had such a list of questions and in the standard appointment time, he couldn’t get to them all without getting off his schedule.  Maybe your doctor would agree to do the same?  I don’t know, but someone once told me, “If you never ask the question, the answer is always, ’No!’”

Here’s a link to the article:

www.nextavenue.org/becoming-aging-parent-health-care-advocate/

When Should You Become Your Aging Parent’s Health Care Advocate?
What to consider when your help is increasingly needed
By Eileen Beal, Benjamin Rose Institute on Aging
Next Avenue
August 29, 2016

Denise