Diane Keaton: New Bio Offers Lessons on Love, Legacies and Learning to be a Caregiver

Photo credit: Firooz Zahedi 2011

This week Diane Keaton published a memoir Then Again which is a wonderful journey through the lives of two women:  Diane and her mother, Dorothy Hall.  As opposed to some of the Mommie Dearest-type celebrity books, Diane weaves together her life and career with the memories and mementos of her mother, whom she calls “the love of my life.”

Before Dorothy passed in 2008 at the age of 86, she had lived 15 years with Alzheimer’s disease – a progressive brain disease where symptoms gradually worsen over a period of years.

Today, more than five million Americans are diagnosed with this disease and the Alzheimer’s Association tells us that one out of every two people over the age of 85 will develop Alzheimer’s.

What was so poignant to me as I read this book was Diane’s description of caring for her mother while also caring for her two small adopted children, which we know makes her one of the 24 million Sandwich Generation caregivers.  According to the Pew Research Center just over one of every eight Americans aged 40 to 60 is both raising a child and caring for a parent.  In addition, between seven to 10 million adults care for their aging parents long distance.

In the book, Diane describes her Sandwich Generation role this way:

“As Mother struggled to complete sentences, I watched Dexter, my daughter, and a few years later little Duke, my son, begin to form words as a means to capture the wonder of their developing minds.   The state of being a woman in between two loves – one as a daughter, the other as a mother – has changed me.  It’s been a challenge to witness the betrayal of such a cruel disease while learning to give love with the promise of stability.”  

Diane’s Rehearsal for the Role of a Lifetime:  Caregiver

I have always loved Diane Keaton.  I love her quirky sensibility, her fashionable love for gloves and hats, her brilliance as both a dramatic (The Godfather, Reds) and romantic comedy (Annie Hall, Something’s Gotta Give) actress, her fearless independence as a single woman, her love of turtleneck sweaters, her becoming a mother at age 50 and of course, her Southern California-girl roots.

But, until I started reading her book and doing more research on her career, I had not realized that Diane had been in a dress rehearsal for her role as caregiver to her mother through some of her movie roles.

Perhaps one of her best roles was in Marvin’s Room (1996) also starring Meryl Streep, Leonardo DiCaprio and Hume Cronyn.  In the movie, Diane plays “Bessie” who is a family caregiver for her father (Cronyn) as well as her aunt played by Gwen Verdon.

We eventually find out that Bessie has been diagnosed with leukemia and her survival may depend on a bone marrow transplant from her estranged sister, played by Streep.  The film then delivers its message that even in dysfunctional families, there is a healing power to love.

Diane also played a reluctant caregiver to an ever-devilish Jack Nicholson in one of my favorite movies, Something’s Gotta Give  (on a side note:  I read an article that described director Nancy Meyers’ movies, of which Something’s Gotta Give is one of her best, as “real estate porn for women” – I agree and loved Diane’s Hamptons home in the movie!).

Jack, who had been dating Diane’s daughter played by the 30-something Amanda Peet, suffers a heart attack and must be watched over by a disapproving but ultimately romantically intrigued Diane.

In The Other Sister, Diane played the mother to a mentally challenged daughter played by Juliette Lewis, and she directed and starred in Hangin’ Up about three sisters, where she played alongside Meg Ryan and Lisa Kudrow, caring for their terminally ill father played by Walter Matthau.

Leaving a Legacy

What is perhaps the best lesson of Diane’s book is the legacy that she has left for her children.  Then Again is not just about Diane and her mother, but a gift to her children.  She describes how her mother kept scrapbooks and pieces of paper with the word “Think” written on them.  The lesson for her children through this book is Diane will be the torchbearer for her mother’s mantra to “Think.”

I have spoken to so many family caregivers who truly believe that creating a scrapbook, writing in a journal, helping a loved one to create their legacy or life’s story or simply posting stories to a personal online community like those you can create at Lotsa Helping Hands, are therapeutic in the process of watching a loved one age and decline or struggle with an illness or disease.

It is Diane’s character in Marvin’s Room, Bessie, who has sacrificed everything to care for her aunt and father, but who has found fulfillment and contentment in her role as caregiver. In Bessie’s words, “I’ve had such love in my life. I look back, and I’ve had such love.”
Note:  Sherri Snelling is writing a book on celebrities who are caregivers to be published in 2012.

Home for the Holidays – How to Have the Caregiving Conversation

Life is a voyage that is homeward bound.  –Herman Melville

Photo Credit: Bonita Cheshier/Dreamstime

This holiday season, many of us will be heading home.   Back to the place where we grew up, where we learned to ride a bike, where our buried treasures are still in the backyard, where we walk through the front door and the memories of being a kid are still in the air.

But, you are not a kid any longer.  Your parents are getting older and this year might be a different homecoming.  According to the National Alliance for Caregiving, of the 44 million family members caring for a loved one over the age of 50, approximately seven million are long-distance caregivers who live two hours or more from their loved one.

On this holiday visit, you may feel that mom is complaining more about her arthritis and can no longer reach the top shelf for the gravy boat.  She has also lost a lot of weight and looks more fragile navigating the stairs.

Or perhaps dad, once gregarious and cheery, is forgetting where he keeps putting his car keys or has become withdrawn, quiet and cannot complete his thoughts during conversation.

You realize somehow that things have changed.  While you will soon be returning to your life and routine after the holidays, you are worried about what these changes might mean for the future care and safety of your parents.

The 10 Signposts on the Road to Caregiving

How do you know when changes are serious and may signal the need to have the conversation about caregiving?  Before you head home this year, you may want to review some of the signs that indicate your parent or parents need more care – whether they want to continue “aging in place” in their own home or may have to consider alternative living options to ensure their health and safety.

Many organizations have developed signs to look for – the National Association of Area Agencies on Aging, AARP and Caring From a Distance to name a few.  Here is a compilation of some of these signs to watch for (or click on the links to get their complete lists):

  1. Changes in eating habits, weight gain or loss, drinking more alcohol than usual
  2. Neglecting personal hygiene (body odor, bad breath, soiled clothes, neglected nails or teeth, unattended skin sores or rashes)
  3. Not taking medications or taking too much, wrong doses or frequency
  4. Cluttered or unsanitary home (mail or newspapers piling up and unopened, a lot of expired food in the refrigerator, dirty dishes piling up in the sink, bugs or pests not addressed, lots of dust or dirt)
  5. Behavioral changes (more loud or quiet, paranoid, agitated, withdrawn and uncommunicative)
  6. Social rituals have changed (no longer going to religious services, book club, bridge game or social gatherings, avoiding friends or neighbors)
  7. Physical injuries or problems such as a recent bad fall, burns, bruises, trouble walking or navigating stairs, trouble hearing or seeing
  8. Mishandled finances (past due notices, overpaying bills or paying twice, hiding money, documentation that points to big financial changes for no reason – refinancing home, pension fund depleted, etc.)
  9. Unusual purchases (especially any signs of entering unusual amount of contests, online or home shopping network purchases, telemarketer schemes, etc.)
  10. Forgetting important things – leaving the stove on, leaving front door wide open, getting in the car and forgetting where they are going (also see my September 20th blog on Alzheimer’s and Early Detection – the 10 Warning Signs.)

If you feel your loved one is experiencing any of these signs – it is time to take action.

How to Have the C-A-R-E Conversation

The first thing you need to do is talk with your older loved one.  If your mom, dad or other loved one is incapable of having this conversation, you will want to talk with your other parent who may be doing the primary caregiving.

Many parents do not want to worry their adult children and take on this caregiving burden all alone.  As discussed in several of my blogs, if both your parents are still living, you want to sit down and talk to both of them.  Often, the parent who is the caregiver can become as ill as the loved one they are caring for if they do not get help and support.

Or, if only one parent is still living, you want to ensure your parent that you are here to help.   It is because you are concerned about their future care that you want to have this conversation.

How do you get started?   I call it the “C-A-R-E” Conversation:

C = Create a conversation around caregiving.

Start with either a personal story or recent news (this can be the story of a friend who has been caregiving or recent news such as Meredith Vieira caring for her husband with multiple sclerosis.

This will spark dialogue between you and your loved one on a less personal level and allow them to give opinions.  Once the conversation gets going, you can start to ask more pertinent, personal questions relating to your family.

A = Acknowledge your loved one’s wishes. 

There is a great document called “The Five Wishes” from Aging With Dignity which helps elders and caregivers start the conversation about what they want to have happen as their physical and mental capacities fade.

What is important is to ensure your loved one that you want to do what is best for them – by having this conversation now, rather than being in a crisis when a sudden illness or other event forces the issue, you will be better equipped to help them when the time comes.

R = Review what is already planned. 

Ask your loved one if they have a long-term-care (LTC) policy, legal documentation such as Powers of Attorney or Health Care Directives already set up, Wills, etc.  Make sure you know what is covered, and more importantly, what may not be covered.

Some seniors might feel like they have taken care of these plans, but very often LTC and other documentation does not cover everything and the fall-out is left to the caregiver.  This can cause both emotional and sometimes financial challenges.  If your loved one has a legal or estate advisor, you may want to meet with them to review your questions regarding the plans in place.

Again, make sure your loved one is comfortable with this idea – the purpose is to not invade their privacy but to have them understand this is a “partnership” for their elder care and you are going to possibly be acting on their behalf so it is important to know everything.

E = Engage the whole family.

While you might be the one to take the initiative of starting the caregiving conversation, especially if you feel you will become the primary caregiver, you want to ensure you include any siblings, your other parent, or even your own family (spouse and older children), in the caregiving plan around your loved one.

This helps everyone prepare for their role and will help ensure the primary caregiver does not become burned out or bankrupt when they take on caregiving.

Family stress and strife, especially among siblings who do not agree on their parents’ care, is common especially as family emotions run high when a caregiving crisis hits.  You can hopefully avoid this when the time comes by having these conversations when everyone, including your loved one, can be involved, thus ensuring all these issues are discussed and decided upon ahead of time.

If the family dynamic will not allow you to lead the discussion easily, you may want to think about retaining a neutral party who is an expert in this area of elder care – a geriatric care manager.  You can find these professionals and more information about the help they can provide from the National Association of Professional Geriatric Care Managers.

By having the C-A-R-E Conversation and doing a little planning ahead, you will be better prepared to balance caring for yourself while you also care for everyone else.

Helping our Heroes – Veterans and Their Caregivers

Photo credit: Beaniebeagel/Dreamstime.com

After 9/11 many people started wearing American flag lapel pins – it was a show of pride in our country and in our troops who would soon deploy to fight the war on terrorism.  While wearing a pin is a great symbol – there are other ways for us to show our support for our nation’s veterans and their family caregivers.

The Department of Veterans Affairs states that there are 23 million veterans of wars ranging from WWII to Operation Enduring Freedom.  Many of those veterans require care from a family member.   In fact, 10 million Americans are caring for their loved one who is a veteran and seven million caregivers are actually veterans themselves.

In a landmark study released last Veterans Day by the National Alliance for Caregiving and underwritten by UnitedHealth Foundation, it showed:

  • Veterans’ caregivers bear a higher burden than most, helping to manage emotional and physical conditions often for 10 years or longer.  In fact, compared to caregivers nationally, caregivers of veterans are twice as likely to be in their caregiving role for more than 10 years (30 percent vs. 15 percent).
  • Caregivers of veterans are overwhelmingly women (96 percent) who sacrifice their own health, work and family life.  These veterans’ caregivers have twice the levels of stress (88 percent) or depression (63 percent) than typical caregivers.
  • The study revealed that many veteran’s caregivers are younger – spouses of those having served in OIF/OEF but also revealed that Baby Boomer parents are caring for their injured adult children.  Many of these veterans are suffering with post-traumatic stress disorder (PTSD) (60 percent), 70 percent with mental health conditions such as depression or anxiety, and 29 percent with traumatic brain injury (TBI).

Finding Help Online

For help with finding services to help the caregivers of veterans, there is a wonderful Web site which has over 11,000 resources.  It is called the National Resource Directory and is maintained by the Departments of Defense, Labor and Veterans Affairs.

In addition, a few months ago the VA launched a Caregiver Specific Web site (www.caregiver.va.gov) that includes an online caregiver tool box and connection to caregiver support coordinators in VA Medical Centers.  They also created a caregiver toll-free support line (1-855-260-3274).

Giving Back to Those Who Gave So Much

ReMIND – Stand Up for Heroes is the annual event coordinated by the Bob Woodruff Foundation and part of the ReMIND campaign to provide resources and support to injured service members, veterans and their families.  Held last night (November 10) in New York, you can check out photos of headliners Bruce Springsteen and Jon Stewart and donate to the cause through the ReMIND Web site.

Wounded Warrior Project – dedicated to those who were injured since 9/11, WWP has an online community for its members to share stories and volunteer to help one another at My Care Crew, they have hosted numerous Caregiver Retreats where caregivers get a weekend away to relax, recharge and reconnect with other caregivers going through similar challenges, and they support a host of career training and employment opportunities for veterans and their spouses.

You can help through the Believe in Heroes™ campaign that calls on Americans to recognize the enormous sacrifices made by our newest generation of veterans and to honor the service of these individuals between September 11 and November 11. The initiative challenges all Americans to show their support of veterans by hosting a Believe in Heroes party, supporting retailers and brands that support heroes or purchasing Believe in Heroes gear and apparel.

Joining Forces – this is a new initiative to encourage institutions, businesses and individuals to do more to help military families that is championed by First Lady Michelle Obama and wife of Vice President, Jill Biden. Here are some of the programs you can support:

  • The YMCA, National Military Family Association and Sierra Club Foundation offered free summer camp to 7,000 military kids at camps in 35 states.
  • Wal-Mart and Sam’s Club will guarantee a job at a nearby store for military family members who have been transferred to another part of the country.
  • The U.S. Chamber of Commerce will hold 100 hiring fairs around the country to help 50,000 veterans and military spouses find jobs outside government

National Military Family Association – Operation Purple Healing Adventures is a family camp experience for Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF) military families.

Project Sanctuary – recently profiled in People magazine, this non-profit organization has a mission to provide therapeutic, curative, supportive and recreational activities to veterans, active military personnel, their spouses and children in a leisure environment.

God bless our troops, our veterans and their family caregivers.  And, on this Veterans Day (and every day) – thank you for your service, your courage, your sacrifices.

Note:  This week’s blog is dedicated to the veterans in my life – my step-father who is a Korean War Veteran and proud Navy man, my late grandfather who was an Army WWII veteran and my brother’s good friend, Major Tai Le, who has done two tours in Iraq and has returned to us in California where he is now at Camp Pendleton after being assigned to the Pentagon in the JAG office.

Heroes on the Homefront – Caregivers of Veterans

I slept and dreamed that life was beauty;  I woke and found that life was duty.

–Ellen Sturgis Hooper

Photo credit: Kevin Zimarik/Dreamstime.com

Today is Veterans Day when we honor those who have served our country at home and abroad to ensure our freedom.  But it is not just our service men and women who make the sacrifices for freedom.

I would also like to honor the 10 million family caregivers of our nation’s veterans and the seven million caregivers who are veterans themselves.

I recently had the privilege of speaking to two caregivers of veterans whose stories highlight the sacrifice and service which is the true hallmark of our military families.

From Newlywed to Nurse

Linda* met her husband, Joe*, in an online dating site for boomer and seniors.  She was in her late 50s and was thrilled to find the love of her life in this enigmatic, heroic man who was a Vietnam War veteran.  Their whirlwind romance led to marriage but Linda’s dreams of riding off into the sunset together were about to take a detour.  In Linda’s words, “Within 14 months I went from newlywed to nurse.”

Joe felt that he had long suffered the consequences of the Agent Orange that he had come into contact with in South Vietnam.  Recently, he had a complicated hernia operation and in addition to his rapid weight loss, he was eventually diagnosed with prostate cancer.  Linda began her long journey of caring for her ailing husband.

As days turned into weeks turned into months, Linda realized she was neglecting her own health and her emotional state was fragile.  She had stopped going to her gym class, stopped having lunch with girlfriends and ultimately she had to leave her job as head of a major company’s customer service department because Joe needed constant care.

Proud Parents Face a Retirement of Caregiving

Rosa* and her husband Louis* had both recently retired and were busy planning how they would be spending their “golden years.”  They had it all mapped out – a road trip in an RV that Louis had his eye on and participating in tandem bike races around the country.  Then the call came that would change everything.

Their son George, age 25, was serving in Iraq.  But instead of their weekly Skype chat, they received a call advising them that their son had been in a suicide bomb attack while on patrol.  He was being transported to Walter Reed Army Medical Center in Washington, D.C.

When they arrived, they found their once vibrant, talkative son had suffered traumatic brain injury (TBI).  The doctors informed Rosa and Louis that George would never regain his ability to walk, dress himself, bathe himself, have the ability to talk clearly, or be in any way independent.

After Rosa and Louis brought George home they needed to create a new normal.  The den in their family home was transformed into George’s room equipped with a special patient lift to easily get George from bed to wheelchair or the bath.  Every day, Rosa lovingly bathes her 27-year-old son – as she once did when he was only 27 months old.

Rosa teared up when she showed me her son’s Purple Heart as George told me that it was George Washington on the medal, “George just like me” came through loud and clear in George’s enthusiastic voice.  Whatever hopes and dreams she had for her son’s future are now captured in the pride that she has in her son and his service to his country.

Epilogues of Inspiration

Linda told me she pulled herself out of the downward spiral of depression so common for caregivers. She found solace two ways:  by creating an online newsletter which has now become a Lotsa Helping Hands community to update family and friends about Joe’s progress in beating his cancer and in her progress in getting her life back.  She also took a terrific caregiver self-care education training course through the local VA office called Powerful Tools for Caregivers.

You might think that Rosa and Louis’s plans for their retirement were destroyed but in reality they were just delayed.  The wonderful resilience and inspiration of this family is exemplified by the fact that just a few months ago, they took the RV to Denver along with George and participated in their tandem bike race – with George in a specially designed “pull cart” behind their bike.

In a landmark study released last Veterans Day by the National Alliance for Caregiving and underwritten by UnitedHealth Foundation, it showed:

  • Veterans’ caregivers bear a higher burden than most, helping to manage emotional and physical conditions often for 10 years or longer.  In fact, compared to caregivers nationally, caregivers of veterans are twice as likely to be in their caregiving role for more than 10 years (30 percent vs. 15 percent).
  • Caregivers of veterans are overwhelmingly women (96 percent) who sacrifice their own health, work and family life.  These veteran’s caregivers have twice the levels of stress (88 percent) or depression (63 percent) than typical caregivers.
  • The study revealed that many veteran’s caregivers are younger – spouses of those having served in Operation Iraqi Freedom (OIF)/Operation Enduring Freedom (OEF) but also revealed that Baby Boomer parents are caring for their injured adult children.
  • Many of these veterans are suffering with the following:  60 percent have post-traumatic stress disorder (PTSD), 70 percent with mental health conditions such as depression or anxiety, and 29 percent with traumatic brain injury (TBI).

Show How You Care for Our Veterans and Their Caregivers

Our veterans and their family caregivers deserve our thanks and our support.  Make a pledge to help a veteran and their caregiver in any way you can – through a donation, through volunteering, through a simple gesture like making a dinner or sitting with a wounded vet so their caregiver can get a break.

(See my companion article on supporting veterans and their caregivers here.)

God bless our troops, our veterans and their family caregivers.  And, on this Veterans Day (and every day) – my thanks for your service, your courage, your sacrifices and your caring.

Note:  This week’s blog is dedicated to the veterans in my life – my step-father who is a Korean War Veteran and proud Navy man, my late grandfather who was an Army WWII veteran and my brother’s good friend, Major Tai Le, who has done two tours in Iraq and has returned to us in California where he is now at Camp Pendelton after being assigned to the Pentagon in the JAG office.

*names changed for privacy reasons.

Brooke Shields: The Endless Love of Caring for Someone with Alzheimer’s

Celebrity Photos/Dreamstime

We remember her as an icon of the 70s and 80s from controversial movies like Pretty Baby and those provocative Calvin Klein ads (“You want to know what comes between me and my Calvins?  Nothing.”).   In recent years she has reinvented herself as a TV star (Lipstick Jungle, Suddenly Susan) and Broadway headliner (Chicago and The Addams Family).

While she has maintained a role in the spotlight for more than 40 years – perhaps her most important public role is in speaking out about postpartum depression after the birth of her first daughter and in the last few years speaking up about becoming a caregiver for her mother.

Alzheimer’s Bridges the Gap Between Daughter and Mother

It was her role as a new mom and her mother’s diagnosis with a dreaded disease that led her to heal a rift that emerged between the once inseparable Brooke and her mother, Terry.  Often criticized for steering her young daughter’s career in sexually explicit ways for someone so young, Terry always had a champion and friend in her daughter.  However, when Brooke turned 28 she cut all ties with her mother.  The reason?  Terry’s alcoholism.

A few years ago, Terry was diagnosed with dementia and progressive Alzheimer’s disease.  Brooke went through all the emotions that a family caregiver of someone with an Alzheimer’s diagnosis does – especially the sadness and confusion over an illness that robs the person of their memories or causes them to be violent and aggressive, and have the tendency to wander. 

Brooke’s New Role – Sandwich Generation Caregiver

When Brooke described caregiving for her mom in a recent woman’s magazine, she called it a “burden” and a “blessing.”   The reality is that Brooke was a caregiver for her mom for a lot of years as so many children of alcoholics find themselves.

But, just as Brooke had established her independence and had two beautiful young daughters, her mother’s diagnosis finds Brooke reprising her role as caregiver to her mom.

Trying to maintain that balance between caring for her girls and caring for her mother makes Brooke one of the millions of Sandwich Generation caregivers.  These caregivers are squeezed between raising children and caring for an older loved one simultaneously – about one of every three of the nation’s 65 million caregivers are part of the Sandwich Generation.

In addition to the juggling act of caring for kids, career and an older parent, so many family caregivers express feeling all alone in their caregiving journey.   It is this sense of isolation that can lead to chronic stress, depression and other health risks.  For Brooke, it truly is a solo act – as an only child of a single mother all the caregiving responsibilities fall squarely on Brooke’s shoulders.

The Constant Concern of Alzheimer’s Caregivers

Brooke’s mother is one of the five million Americans today who have been diagnosed with Alzheimer’s disease, the most common form of dementia.    According to the Alzheimer’s Association, 50 percent of those living with disease are undiagnosed.   Knowing the early warning signs and being able to plan ahead for the caregiving journey can help caregivers and families.

Brooke noticed over the years that her mother was not as “competent” as she had been.   It was not until 2008 after her mother’s diagnosis that Brooke realized she was not capable of keeping her mother as safe and as healthy as possible at home.  She made the hard decision to have her mother checked into a senior living facility specializing in dementia and Alzheimer’s care.

However, a frightening incident where her mother was checked out of the facility by a tabloid reporter only to be found having lunch with the reporter at a nearby diner, caused Brooke to realize that being a caregiver of someone with dementia is going to be a long, tough emotional journey.

The Emotional Toll of Caregiving

When the shift happens and you become a parent to your parent – there are no rules, books or guideposts for what to expect.  Brooke now finds herself struggling with the emotional toll of caregiving on her and her entire family.

In a recent interview she said of her mother, “I’ve dealt with her alcoholism for years, but this is so new to me.  I’ve been making my own decisions for a long time, but after all these years, I want my mom.”

And, while Brooke is acutely aware of all that her mother’s diminishing health entails, she admits it is beginning to have an effect on her children as well — particularly her oldest daughter, Rowan, age 6 ½.  She was recently interviewed saying, “My oldest is uncomfortable because she knows more,” Brooke says.

“One day she said, ‘Mom, are you gonna be crazy like Toots when you grow up?’ I was like, ‘Oh, God.’

Having to help her daughters understand the confusion about how Alzheimer’s can effect a loved one while simultaneously managing her own conflicting emotions and sense of loss for her slowly disappearing parent is one of the burdens of Sandwich Generation caregivers like Brooke.

Brooke Writes Her Own Caregiving Script

Being stuck in the middle of this caring continuum can be isolating, frightening and lonely.  Some days you feel like “who is taking care of me?”  The answer is you need to take care of yourself – do the things that nurture your soul, maintain your health, and bring peace to your mind away from the endless needs of everyone else.

As Brooke said in the recent magazine interview, “First of all, there’s no martyrdom.  It’s a pain in the ass, but it has to be done. I just think, you’re only given what you supposedly can handle.”

In other words, Brooke looks at caregiving as just one more role she will play so she is preparing and performing as best she can.

When musing about the differences between her generation and her mother’s, she said, “Hers was an era without self-analysis, self-affirmation.  Our generation doesn’t stand for that.”

National Caregiver Month Kicks Off With the Caregiver Bill of Rights

Photo credit: Cheryl Case/Dreamstime

November is the start of National Family Caregiver Month and to celebrate the 65 million Americans caring for a loved one who has a chronic illness, a disability or whose age requires more help, I thought I would present my 10 ideas for the Caregiver Bill of Rights.

Other organizations such as the American Heart Association and A Place for Mom as well as author Jo Horne have created their own lists but I have added a few more “rights” for consideration.

Much like our forefathers, we need to balance the individual responsibilities versus those provided by government and other sources.  I believe these 10 Caregiver Bill of Rights strike that balance:

 

1.  The right to have balance between caring for my loved one and caring for myself.

This includes seeking extra help when needed (even if my loved one objects), maintaining routines and plans as best I can so as to not “lose” myself while on this caregiving journey.

2.  The right to receive a financial break or tax credit for caring full-time for my loved one.

In the same way Americans are granted tax credits for dependent children, I should be granted tax credits for caring for parents who are dependent on me for their constant care.

3.  The right to work for an employer that understands caregivers.

As part of an aging workforce, more and more of us will face the life event of caregiving and I have a right to work for an employer that will provide me with the employee assistance to maintain my work performance and productivity, my own health and wellness, and support for my loved one without fear of reprisal or dismissal.

4.  The right to expect the nation’s legislators to acknowledge the valuable service I perform and to enact policies that not only support those with the illness or disability but support their family caregivers as well.

This includes acknowledging my role as a first responder in the long-term-care crisis in this country.  According to AARP family caregivers represent $450 billion in societal value in the unpaid care we provide and we need to be recognized for this collective and individual effort.

5.   The right to expect that my loved one’s medical advisors and health care professionals understand my critical role as part of the primary care team in caring for my loved one.

I should expect that they will communicate with me without violating my loved one’s privacy rights so that I can best care for my loved one.

6.  The right to easily find resources that will help me in my caregiving journey.

Whether these services are provided by public or private organizations, every caregiver should know where to turn to get the help and education they need at whatever stage of caregiving they are encountering.

7.  The right to not take on the financial burden of caregiving all by myself.

I should not have to put my financial future at risk to care for my loved one today.

8.  The right to make choices that will help me manage my stress without feeling guilt or depression that I am focusing on myself at times rather than solely on my loved one.

This includes the right to take a break – for a few minutes or a few days.  The need to seek respite in my caregiving duties is essential to my ability to continue caring for my loved one long-term.

9. The right to expect my close circle of friends and family to understand my caregiving role and to support me in any way they can.

This includes the right to expect that I can reach out to them so that I do not feel alone.  This includes my spouse, my adult children, my siblings, my co-workers and my close friends who lift me up when I am down and help me keep going on this caregiving journey.

10.  The right to expect “life, liberty and the pursuit of happiness” even while so much of my time, energy and attention is going to care for my loved one.