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

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

“Understanding the Dementia Experience” (with focus on memory loss)

This post may be of interest to those caring for someone with memory loss.

Recently, on an online Alzheimer’s support group, I saw a recommendation for the booklet “Understanding the Dementia Experience,” by Jennifer Ghent-Fuller, a retired nurse.  The 70-page booklet is available here at no charge:

Understanding the Dementia Experience
Jennifer Ghent-Fuller
2015
www.smashwords.com/books/view/210580

The goal of the author seems to be to have caregivers understand that the caregiver must change his/her own behavior and attitude because the person with dementia cannot.

Brain Support Network volunteer Denise Dagan recently reviewed the booklet for all of us.  She concluded that the book is written with memory loss (so, Alzheimer’s Disease) in mind, so if your loved one has memory loss, this booklet may be of interest to you.  Take it away Denise….

The author, Jennifer Ghent-Fuller, a retired Canadian nurse, worked the last 11 of her 25 years as an educator and support counsellor for people with dementia and their families and other carers.

While her writing style took a bit for me to get used to, she certainly has all the information in there, particularly with respect to Alzheimer’s disease, but it can be extrapolated to other dementias, especially in the later stages when memory and cognition are affected.  It is presented in a conversational, warm and instructive manner.

She begins by explaining that people with dementia should not be seen as people with behavior problems because the disease causes them to have an altered view of reality.  “Once we understand the dementia experience, we see their behavior as appropriate within the context of the dementia.”

Here are a few common examples we may react to differently until we understand “the dementia experience”:

As a person’s long term memories are lost from the most recent to the past, they initial have access to most of the past 50 years, then only the first 40, then 30.  This results in them thinking of themselves as progressively younger.  This man manifest itself as “not recognizing their family because they are looking for the individuals they were sharing their life with at age 30.”

Because of this regression, “It is extremely common for people with Alzheimer’s disease to be looking for their parents, and to be distressed if they are told they are long dead.”  She explains what can happen if one persists in telling them the truth.  It is best to avoid causing them emotional pain.  Remember, in their mind they may be feeling like they are only 10 years old!  She suggests telling them, for example, your parents are (insert a place they enjoyed) and they miss you.

“If you compare reality to a jigsaw puzzle, we have all the pieces in place and are able to see the whole picture.  The longer a person has Alzheimer’s disease, the more pieces are missing, and the more difficulty they have in understanding the picture.  However, it is human nature to try.”  This may result in many unfortunate scenarios.  “They may look at their 30-year-old daughter and decide she must be their sister, calling her by their daughter’s aunt’s name.  They may blame others for things that have gone wrong,” or gone missing.  Fuller has a good response to every situation after explaining how the person with dementia has come to the comments or behavior in example after example.

She introduced me to “Spaced Retrieval” training, which allows someone to help a person with Alzheimer’s develop new habits, such as use a walker correctly, but they do not remember being taught.  Information and a link to download the app can be found here:

tactustherapy.com/app/srt/

Remember, this does not “reverse the loss of the ability to think rationally, memorize, think in the abstract, have insight, consider many facts at once to solve a problem, or assess the feelings of one’s own body and reach a conclusion about what to do next in order to resolve difficulties.”

She really leaves no stone unturned, even including at the end, the brochure “How to Interact with a Person with Dementia (with Memory Loss),” which is bullet points of what to keep in mind when interacting with a person with dementia, with Do’s and Don’ts.

Her final thought is “You need to change your behaviour to adapt to the dementia because the person with the disease cannot.”

– Denise

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

Caregiver Grief, Loss, and Bereavement

Though this fact sheet is from the Alzheimer’s Society of Great Britain, very little of the article is Alzheimer’s-specific or dementia-specific.  This long fact sheet about the anticipatory grief, ambiguous loss, and bereavement associated with caregiving.  (In the UK, caregivers are called “carers.”)  One type of loss the fact sheet addresses is the loss suffered by placing someone in a care facility.

Here’s one excerpt:

Depending on the carer’s relationship with the person, and their individual circumstances, they may experience the loss of:
• their relationship
• intimacy
• companionship, support and special understanding from the person
• communication between themselves and the person
• shared activities and hobbies
• freedom to work or pursue other activities
• a particular lifestyle
• a planned future
• previous relationship roles.

Here’s a link to the fact sheet:

www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=170

Grief, Loss and Bereavement
Alzheimer’s Society of Great Britain
July 2014

Robin

Nobody Talks About These 2 Reasons for Caregiver Stress

Someone posted a link to this DailyCaring article this morning on an online MSA support group.

The authors say that nobody talks about these two reasons for caregiver stress —
1.  You know exactly how this will end.
2.  You feel constant, unrelenting worry.

Three tips are offered for dealing with this stress:
1. Stay in the moment.
2. Talk about how you feel.
3. Talk with a counselor.

Here’s a link to the short article:

dailycaring.com/nobody-talks-about-these-2-reasons-for-caregiver-stress/

Stress Relief
Nobody Talks About These 2 Reasons for Caregiver Stress
By DailyCaring Editorial Staff

Based on the date of the comments, I believe it was first posted on Monday, September 19, 2016.

Robin

“Making a living will is a good idea. Telling people about it is even better”

“Endnotes” is a regular section of STAT, a website focused on the “frontiers of health and medicine.”  Someone on an online frontotemporal dementia support group recently shared an article on STATnews.com so I started digging around on the website.  There are lots of good articles.

This article — titled “Making a living will is a good idea. Telling people about it is even better” — makes an excellent point.  Many of us have prepared a living will or advance care directives but few of us have shared them with our primary and secondary healthcare agents.  And few of us have had conversations about our wishes with our healthcare agents.

The author notes that “spouses often grant power of attorney to one another or complete living wills, but they find it too painful to talk openly about each other’s death.”

Also, some patients are “reluctant to thoroughly advocate for their end-of-life preferences” as they are worried about hurting the feelings of their loved ones.

When a healthcare agent doesn’t know the person’s end-of-life wishes for treatment, this can backfire because usually uninformed healthcare agents opt for aggressive treatment.

Here’s a link to the article:

www.statnews.com/2015/12/04/living-will-important-steps/

Endnotes
Making a living will is a good idea. Telling people about it is even better    
STAT
By Bob Tedeschi
December 4, 2015

Robin

 

ABCs of Medicare; open enrollment starts Oct. 15

This post may be of interest to those who have family members on Medicare, and probably of most interest to adult children who are new caregivers to parents as this audience probably has little awareness of the ins-and-outs of Medicare.

We are in the midst of National Medicare Education Week (ends on Wed., Sept. 21st), and Medicare Open Enrollment starts on Oct. 15th.

Besides a short article in Huffington Post that offers a quick overview of Medicare Parts A-D, there are two other good sources of Medicare info:

1- MedicareMadeClear.com, a website

2- HICAP (Health Insurance Counseling and Advocacy Program), a terrific resource for Medicare and MediCal (what Medicaid is called in California) info.  In California, you can find HICAP resources by county.  Start here and then click on “Services by County”:

www.aging.ca.gov/hicap/

In other states, HICAP might be called SHIP (State Health Insurance Assistance Program).  You can likely find contact info on SHIP resources by contacting the local area agency on aging.

Here’s a link to the short article on the “ABCs of Medicare”:

www.huffingtonpost.com/entry/abcs-of-medicare-for-caregivers_us_57d6d1abe4b0273330ac46f3?

Voices | Health Post 50
The ABCs Of Medicare For Caregivers
Huffington Post
Dr. Efrem Castillo, Chief Medical Officer, UnitedHealthcare Medicare & Retirement
09/12/2016 12:17 pm 

Happy reading!

Robin

Family Caregivers Need Help Too

This Kaiser Health News article is about a report from the National Academies of Science, Engineering, and Medicine on the 18 million people caring for a relative older than 65.  The report argue that “the need to recognize and support caregivers is among the most significant challenges” facing the elderly, families, and society.

“According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.”

Caregiving has many costs:

* Economic:  “Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.”

* Physical and Emotional:  “If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

The author notes that the report “recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.”

The full article is copied below.

Robin

————————————

khn.org/news/study-elderlys-family-caregivers-need-help-too/

Study: Elderly’s Family Caregivers Need Help Too
Kaiser Health News
By Rachel Bluth
September 13, 2016

Elderly Americans’ well-being is at risk unless the U.S. does much more to help millions of family caregivers who sacrifice their own health, finances and personal lives to look out for loved ones, reported a study released Tuesday.

Nearly 18 million people care for a relative older than 65 who needs help, yet “the need to recognize and support caregivers is among the most significant challenges” facing the nation’s swelling elderly population, their families and society, according to the report from the National Academies of Science, Engineering, and Medicine. Describing family caregiving as “a critical issue of public policy,” a committee of experts in health care and aging said the next presidential administration in 2017 should direct a national strategy to develop ways to support caregivers, including economically.

According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.

Five years is the median duration that family members care for older adults with high needs, the report said.

For some Americans who accept that responsibility, that can mean taking a less demanding job, foregoing promotions or dropping out of the workforce.

Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.

A possible fix for that problem, proposed by researchers in 2009, is to provide caregivers with a Social Security credit for a defined level of deemed wages during a specified time period, the report said.

Leave programs do exist for some workers shouldering caregiving duties, but many lack such job protections.

The federal Family and Medical Leave Act doesn’t cover 40 percent of the workforce. It allows eligible employees to take 12 weeks of unpaid time off to care for certain family members, but the law only applies to those who work federal, state and local governments and private companies with more than 50 employees. But ineligible family relationships for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces and nephews. Many workers can’t afford to give up their incomes for 12 weeks.

In 2011, 17 percent of caregivers didn’t take leave because they feared losing their jobs, according to a national survey cited in the report.

The report recommends that family caregivers receive status as a protected class under existing job discrimination laws and that employers get guidance and training on ways to support workers caring for family members.

Beyond the economic costs of caregiving, the report notes that the social and physical toll of caregiving should get more attention than it does.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

Instead of delivering “patient-centered” care, health care providers should adopt “family-centered” models that include checking with caregivers to ensure they are healthy and capable of filling the role. The report also recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.

Dealing with feeding and drainage tubes, catheters and other complicated medical devices causes stress, and the study’s authors noted that caregivers report “learning by trial and error and fearing that they will make a life-threatening mistake.”

The study was funded by 13 private foundations, the Department of Veterans Affairs, and an anonymous donor that requested the National Academies undertake the research in 2014.

KHN’s coverage of late life and geriatric care is supported by The John A. Hartford Foundation. KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

 

“What It Feels Like to Die”

This is an interesting article on what likely happens as people are “actively dying.”  Despite the sub-title, I didn’t think there was a lot of science being reported but it’s worthwhile reading nonetheless.

www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/

What It Feels Like to Die
Science is just beginning to understand the experience of life’s end.
The Atlantic
Jennie Dear
Sep 9, 2016

Robin