Caregiving
I was honored to be a guest on the Leaders in Eldercare series. To learn how a life coach can support you as you face the overwhelming challenges of caring for an aging parent, LISTEN HERE 
.
Studies show that 75 percent of retirees will serve as caregivers for their loved ones. Members of the sandwich generation often juggle careers and parenthood while caring for an aging parent or an ailing spouse. This balancing act can take an enormous toll on the caregiver's finances, health and wellbeing.
ALMOST 50 MILLION OF US ARE CAREGIVERS
In 2004, the National Alliance for Caregiving and AARP conducted a study that revealed that more than 44 million Americans were caregivers. Today that number is somewhere around 50 million. The majority of caregivers are women, but increasingly men are joining the ranks of family caregivers.
CAREGIVER BURNOUT CAN BE COSTLY
As an informal or family caregiver, you deal with legal and financial issues and face many choices about day-to-day matters such as medical care, household safety, and the hiring of professionals. The most important choice you have to make involves the way you choose to fashion your caregiver role.
Will you be solely responsible for your aging parent, or will you share responsibilities with your siblings? How will you handle the strain of caregiving and still take care of your own needs? How will you avoid the perils of caregiver burnout?
If you are balancing the demands of career and caregiving, you have little time to spend searching for answers. To help you expedite the process, we have assembled a list of resources to help you in your search. The following organizations and publications offer information, education, advocacy and support for caregivers. Most of the services are offered at no cost.
Search our CAREGIVER RESOURCES
To read more about the challenges and rewards of caregiving, check out the articles below.
« Previous EntriesPromises to Keep
Wednesday, July 29th, 2009Diligent. Helpful. Loyal. Does this sound like you? Do you walk on burning coals to meet other people’s needs? What about your own? You don’t have to be a family caregiver to fall into this trap. Many baby boomers, male or female, succumb to this people-pleasing syndrome that Dr. Harriet Braiker calls The Disease to Please.
As we race along this collision course called life, we are desperately hoping to please our boss, our parents, our partners, and our friends. Somewhere in this scramble, we lose ourselves. As the burden of caring for aging parents or other loved ones weighs upon us, we drop our dreams by the side of the road.
We spend every last ounce of energy in our quest to be the perfect employee or angelic omniscient caregiver. We make promises to our co-workers, to our siblings, and to people we just met. But what about the promises we made to ourselves?
Maybe we promised that we would lose 50 pounds or save for retirement. Maybe we promised ourselves to finally finish writing that book. By now, you’re probably hip to the fact that I’m talking about myself here. I’ve been writing a book since the dawn of modern civilization. I’ve become that boring cocktail party pariah who sends people scurrying to freshen their drinks. Enough already!
So here’s the deal. I’m taking a self-imposed summer sabbatical to embark on my own book blitz. My goal is to complete the manuscript, including the reference section, by the second week of September. I reserve the right to blog about my progress if the spirit moves me.
See you in September. If you’re a boomer, those song lyrics may conjure up some memories. I never made it to Woodstock, but my flower child persona embarrassed my conservative sister so much that she refused to walk next to me unless I lost the head band and love beads.
By the way, what promises have you made to yourself? As Dr. Phil would say, "How’s that working for you?"
Who Will Speak for You?
Friday, July 17th, 2009It’s a tough job, but somebody has to do it. When you choose a patient advocate for you or your loved ones, make sure that person is someone who is both competent and able to communicate your wishes. Your closest family member may not be the best choice if that person is not assertive or has physical challenges that limit his or her ability to battle on your behalf. I have seen some real nightmares play out in hospital halls when well-meaning but ineffective relatives frustrated themselves and everyone else in their failed attempts to advocate for their patient. No amount of tears can compensate for confused communication.
On a recent hospital visit, someone asked me, "Are you a nurse?" My response was, "No, I just hang out with a lot of sick people." Here are a few things I’ve learned on my own path through the medical maze.
Protect Yourself and Your Loved Ones:
- Designate someone who can communicate, speak for you and advocate on your behalf.
- Execute Advance Directive documents. A Living Will spells out your wishes about medical and end of life issues. A Health Care Proxy, a Durable Power of Attorney for Health Care Decisions, or a Health Care Power of Attorney are variations of a document that allows you to authorize someone to act on your behalf and make decisions about your medical care when you are no longer competent to do so.
- Enlist the aid of the social worker at the assisted living or rehab facility. He or she may be able to intercede with the doctor and communicate your concerns. Ideally, engage the services of a geriatric care manager early in the process.
- If you do not want the medical team rushing in "full code" with a defibrillator, talk to your doctor and ask that a DNR (Do Not Resuscitate) Order be placed in your file. Inspect your file to see that it’s there.
On this blog, I share my personal experiences in the hope that you may avoid some of the mistakes I’ve seen and made along the way. I am not a medical professional or an attorney. Please consult your own advisers about the choices that are best for you and your loved ones.
Check the Label
Tuesday, May 26th, 2009
Some family caregivers are angels on earth. I have not yet earned my wings. Like many of you, I’m still a work in progress. As a boomer and a life coach, I talk and write about my experiences as a caregiver. Caregiving is one of the things that I do. I do my best not to let it define who I am. I’m working on losing the label.
It’s no secret that labels can be limiting. I contracted polio as an infant. I was fortunate that my case was mild and the physical effects are not obvious. I find that I invoke the label polio survivor when I’m feeling less than optimal, when emotional fatigue has set in and I’m looking for an excuse to skip a meeting or dodge a volunteer request. That’s when I play "the polio card."
Many boomers walk around wearing an invisible C for Caregiver like a modern version of The Scarlet Letter. It’s like a stigma that we carry with us everywhere we go. If you’re not mindful, your time and emotions can become consumed by your caregiver role. You may find yourself at networking meetings talking about your mother. Trust me, I’ve been there.
Caregiving is a long continuum that includes everything from long-distance phone calls to full-time living arrangements. It’s a marathon not a sprint. Taking your mother grocery shopping once a week is one thing. Giving up your job and home to move back in and care for her full-time is a whole other story. It’s important to conserve your energy for the long haul. Sometimes a crisis will occur. Do your best to move through it and get back on track with your own work and wellness goals. If you stay stuck in crisis mode, you’ll never make it to the finish line.
By no means do I wish to minimize the enormous toll that caregiving can take on every level of your being. I’m in the same boat. I have experienced the energy-sapping effects of caregiver burnout. I also know that in every moment, we have a choice. Like my polio, I know that it’s easy to use caregiving as a crutch. We can choose to be a victim or we can choose to take responsibility for our own health and happiness. Give yourself permission to take a caregiver time-out and get back in the game of life.
Being a caregiver can be a blessing and an opportunity for intimacy and personal growth. Just don’t hide your light behind your caregiver label. You are special because of who you are, not just because of what you do.
How about you? Do you talk about caregiving when you attend business meetings? Has that been a source of rapport with other boomers or a stigma with potential employers, clients and referral partner? What might you do differently?
The Truth About Assisted Living
Wednesday, May 20th, 2009
When we travel on vacation, we pack our bags in a spirit of joyful anticipation. When our journey involves a transition to assisted living, we carry a heavier load of emotional baggage.
When Ryan Malone was only 33, his mother suffered a stroke. He managed her care through hospitalization, skilled nursing and assisted living. Compassionate and wise beyond his years, Malone is a staunch advocate for dignity and quality of life for long-term care residents and for caregivers. He blended his business background with his personal experience to create The By Families, For Families Guide to Assisted Living: A Step-by-Step Guide to Evaluating and Transitioning to an Assisted Living Community.
As the title suggests, Malone takes his readers step-by-step through the following stages:
- Assessing the Need to Transition to Assisted Living
- Searching for a Facility
- Finding Quality of Life Living in Assisted Living
Malone is the managing editor of insideeldercare.com, the leading online resource for helping families evaluate and understand the transition to assisted living. When you visit the site, you can purchase this priceless guide that comes with an easy-to-implement companion workbook and these bonus gifts:
- Your First 30 Days in Assisted Living (large print and co-authored by Ryan’s mom)
- Assisted Living Concierge, a toll-free, telephone-based referral service for legal and financial services, including Medicaid planning
- Assisted Living Book Club
The By Families, For Families Guide to Assisted Living is visually attractive, practical and interactive. Malone supports his personal expertise with solid research, charts and references to data about the real cost of long-term care. The Companion Workbook and New Resident Guide fits into a 3-ring binder and includes a quality of life assessment, a family preparedness inventory, and a caregiver stress assessment. You’ll find tips for creating and tapping into your own support network. You can also read a sample advance healthcare directive and a sample residency agreement.
Life would have been far less traumatic if I had known about these materials when my "mother-in-law" had her stroke. I’m so impressed with Malone’s suite of products that I registered as an affiliate to help spread the word. I invite you to learn the truth about assisted living by visiting insideeldercare.com
As you travel on your own personal journey, pack a copy of The By Families, For Families Guide to Assisted Living. We’re all in this together.
Don’t Go Home Without It
Wednesday, March 18th, 2009
Going home is supposed to be the easy part. You put on your clothes. They roll in the wheelchair, and you’re home free. Not exactly.
My 84-year-old mother traveled from the kitchen floor to the emergency room to the intensive care unit. Her heart cycled in and out of atrial fibrillation. The cardiac surgeon inserted a pacemaker. Eight days later, mom was ready to head home to the comfort of her recliner where she could yell at "her Lakers."
The day started off well. According to the cardiologist, "all systems were go" for her release. They were just waiting for the internist to discharge her. He should be in shortly. Almost 12 hours later, at 7:30 p.m., the internist rushed in. After a cursory look at my mother, the doctor sequestered himself to write the discharge orders. We never saw him again. At 8:30 p.m., a nurse who had just begun his shift delivered the discharge orders to my mother whom he had met less than an hour earlier.
As we reviewed the instructions, I inquired about the six prescriptions. Did these orders supersede any previous meds she had been taking? They did. Should she cease and desist taking any prior prescriptions not on this current discharge order? She should. Did this new medication replace the old one she had been taking? It did. We packed mom up and escaped into the dark of night.
Back home in her bed, my mother’s heart began to race. Her blood pressure monitor malfunctioned. We considered calling the paramedics who would have taken us back to the ER. We weighed the impact of stress and the risk of infection for this already fragile being. We did some deep breathing and decided to ride it out.
The next morning, I raced to the pharmacy to have the new prescriptions filled STAT. It was not until several days later, when our own physician went ballistic, that we learned that the new medication on the discharge order was a second blood pressure medication, not a heart medication. After multiple tests, procedures and surgery, the hospital team discharged my mother without her heart medication.
To Prevent Your Own Discharge Disaster:
- Avoid going home at 8:30 at night.
- Don’t skip meals. Stay lucid and advocate for your loved one.
- Avoid going home immediately following a shift change.
- Clarify the discharge orders with the doctor.
- Ask specific questions about any new or discontinued medications. Don’t assume that the "new" drug replaces any deleted "old" drug. Ask what each drug is prescribed for. Inquire about generic versus brand names.
Conditions may be beyond your control, but do your best to stay on top of things. Don’t go home without a clear understanding of the discharge orders. It really can be a matter of life or death.
Hospital Hiatus
Friday, March 6th, 2009
One minute she was sitting in a chair talking on the phone. The next thing she knew, my 84-year-old mother was lying on the floor staring at the refrigerator with bent glasses in her hand and a giant lump on her head. Thus began a calamitous chain of events that included stops along the way to the emergency room, the intensive care unit and the operating room for the insertion of a pacemaker.
It’s been said that we make plans and God laughs. If so, He must have been laughing at my previous post about creating the perfect plan for balancing work and caregiving. I’ve been on a hospital hiatus, camped out at my mother’s bedside, then living out of suitcases at her home.
As a baby boomer caring for an aging parent, vulnerability and unpredictability are two of my constant companions. Caring for my mother is my first priority and posting on my blog is not even on my radar. Still I hope to share what I’ve learned to spare others the anguish we experienced.
I’m grateful to report that my mother is recovering well. We appreciate all your kind comments and words of concern. I’ll be posting again soon about some of the additional lessons we learned along the way. In the meantime, we welcome your comments about your own emergency room dramas.
Mondays with Mom
Thursday, February 12th, 2009
"If it’s not one thing, it’s your mother."
You may remember that line from a skit on Saturday Night Live. If you’re a baby boomer with an elderly parent, you can probably relate. I’m grateful that my mother is in relatively good health for someone in her mid 80s, but like the character on the television show, I find that, "It’s always something!"
During the holidays, mom ate a piece of candy and pulled out a filling. We went to the dentist and had her tooth filled. Then she needed to have her teeth cleaned. We went for the cleaning and the dental hygienist found a cavity, so we needed to schedule a follow-up appointment. And so it goes. Compared to our frequent flyer visits to the ER, these are minor episodes, but they still take time.
Like most moms, my sainted mother does not want to be a burden. She says we can schedule an appointment "whenever it’s convenient." The truth is, when you’re trying to write a book and build a coaching practice, it’s never convenient. I’m very grateful for the precious time I get to share with my mother, AND I still need to make a living.
Instead of feeling like a victim and whining about never having time to write my book, I came up with a win-win solution. Reflecting on the book and movie Tuesdays with Morrie inspired me to schedule "Mondays with Mom." We plan ahead, schedule appointments for Mondays, and I dedicate a block of time to writing without the distractions of email, social networks or phone calls. I pack up a stack of interview notes and my trusty NEO keyboard and head off to the seclusion of my old room at mom’s house. I feel more in control as I plan ahead to meet my mother’s needs while I make progress on my long-term goal. Instead of feeling like a burden, mom feels that she is creating space for me to have some focused creative time. Plus, she makes me lunch. What a deal!
How can you reframe a challenge and turn it into an opportunity?
That’s Some Granny House
Tuesday, January 27th, 2009
It’s not unusual for baby boomers to move their parents into a granny house. When that house is The White House, it’s another story. By now, it’s old news that Marian Robinson, Michelle Obama’s 71-year-old mother, has a room of her own. Robinson pulled up roots and left her Chicago home of 50 years to move in with "the kids."
Grandparents often share parenting responsibilities when their adult children struggle with illness, substance abuse or when called for military service. Unlike millions of Americans, the president and first lady can afford to hire a nanny. With all their resources, they called upon grandma to provide comfort and a modicum of normalcy for their young daughters. Her contribution is priceless.
It’s not by chance that baby boomers are called The Sandwich Generation. Many of us are sandwiched in the middle, caring for our children and for our parents. Sometimes we move in with them. Sometimes they move in with us. A few like Marian Robinson are given a golden opportunity to be of service. Nevertheless, whether we are caring for our parents, caring for our adult children, or caring for our grandchildren, intergenerational living is not always a scene from a Hallmark® commercial.
Adult children can feel infantilized when their parents move back in. Sometimes it’s the aging parents who feel like they’re 14. Older adults who are uprooted can suffer their own identity crisis as they leave behind familiar settings, social connections, comfortable routines and activities that add meaning to their lives.
Before embarking on this journey, talk with your parents or your adult children about your mutual expectations. Set clear boundaries on both sides. Honest communication is crucial for a smooth transition and a happy landing. Anticipate some of the dicey stuff and decide in advance how you’ll resolve any differences.
Be honest with everyone, including yourself. How much responsibility do you feel to care for those in your life? Is this your obligation or your choice? Do you ever feel victimized or put-upon? How do you honor those you love without dishonoring yourself?
With apologies to Simon and Garfunkel, "Here’s to you, Mrs. Robinson," and to all the other grandmas (and grandpas) who are the glue that holds so many fragile families together.
For the record: I know that at 71, Robinson is not technically a baby boomer, but she is a highly visible role model for many of us who are 50-plus.
Good News/Bad News
Friday, January 9th, 2009The Good News: I just opened a piece of mail addressed to my mother-in-law. She has been approved to receive an assessment for career training at a technical school in her area. She may even qualify for training as an electrician, a plumber or an automotive technician. The trade school promises financial assistance and help finding a job.
The Bad News: My mother-in-law died in February. On the school enrollment form, the box was checked indicating that she had been approved to take an assessment. I wonder what it would have taken for her to be rejected (the box that was not checked)? The form listed a number she could call to find out more about her options. I’d say her options are pretty limited at this point.
When a loved one dies, we painfully remove his or her name from various accounts and pieces of correspondence. I know that many of these organizations buy mailing lists or cull names from phone books. They can’t be expected to fact-check or perform due diligence. Nevertheless, their intrusive junk mail can still hit a nerve.
What’s the worse example of ill-timed correspondence you ever received?
Don’t Let the Superbugs Bite
Monday, December 15th, 2008
You know that old joke about avoiding hospitals because they are full of sick people? Well, it’s not so funny anymore. In an early episode of House, MD, Dr. Cuddy snipped off the tie worn by one of the rule-breaking residents. The televised scene was meant to be humorous, but in the real world, doctors’ ties, their scrubs, and even their skillful hands can carry deadly contaminants.
For several years, we’ve been hearing about the dangers of MRSA, short for methicillin-resistant Staphylococous aureus, from sources as diverse as Parade magazine and Joan Didion’s The Year of Magical Thinking. Now a new strain of MRSA is reaching its tentacles out into the community and infecting healthy people at gyms, military bases and prisons.
Recently, I’ve been hearing about another nasty new superbug called C.diff, short for Clostridium difficile, that is infecting patients at hospitals and nursing homes. The Nov. 1, 2008 AARP Bulletin featured A Hospital Germ on the Warpath by Betsy McCaughey, the former lieutenant governor of New York. McCaughey reported that the C. diff infection is spread on surfaces such as privacy curtains, bed rails, blood pressure cuffs, stethoscopes, even on the clothing worn by the doctors and nurses. On Nov. 11, ABC7 News carried a similar story about this nasty intestinal bacterium spreading at an alarming rate.
Sources report that C. diff is spread when patients touch contaminated surfaces and then touch their food. Apparently bleach is the only way to kill this superbug on surfaces that can remain contaminated despite routine cleaning.
Last year, I had a surgery from which I recovered nicely. Or so I thought. Two days after my discharge from the hospital, I ended up back in the emergency room with a nasty infection. People entered my room wearing disposal yellow gowns and masks that looked like they belonged on the Haz-Mat team. During my recovery from my initial surgery, I had been visited by a doctor with great people skills. He always shook my hand before examining me. In retrospect, I wish that Dr. Warm and Fuzzy had paid more attention to universal precautions.
Protect yourself and your loved ones. Wash your hands with soap and water before and after visiting their hospital room. Insist that the medical staff do the same. And think twice before eating in the hospital cafeteria.
To learn more about protecting yourself and your loved ones, go to aarpmagazine.org and enter C.diff in the search bar. The ABC7.com website has additional information, some of it from sponsored links.
« Previous Entries