Family Caregiving from a National Perspective.
As someone who works in the caregiving field, has a radio show for caregivers, and is a caregiver to both parents, I would like to offer a few thoughts.
Some 43.5 million Americans have served as family caregivers during the past 12 months, according to a study earlier this year by the AARP Public Policy Institute and the National Alliance for Caregiving. This number is going to continue to grow as our “oldest old,” those over the age of 85 are the fastest growing segment of our population.
With state Medicaid budget shrinking across the nation, more and more responsibility for the care of our frail elders and disabled is falling on family members. Family members are taking their loved one home from the hospital “quicker and sicker,” providing medical/nursing tasks that were once only performed by clinicians. (Sixty percent of caregivers perform these tasks) This usually happens with little or no training beforehand. To quote my friend and colleague Gail Hunt, former President and CEO of the National Alliance for Caregiving, “This is an exploitation issue. The family caregiver is doing this for free and is being really exploited, with more and more being expected from them” in terms of performing nursing and medical tasks such as giving injections. The physical, emotional, spiritual and financial toll that it takes is well documented in many studies. Many caregivers die before their care receiver, largely in part to the stresses involved with caregiving and self-neglect.
This rapidly growing demographic in our nation has to become a priority. Legislation needs to be passed to give caregivers a tax break, offer a stipend for the care they provide and provide more in home assistance. The care caregivers provide is valued at $522 Billion a year according to a 2014 Rand Corporation study. That is more than our national Medicaid budget.
We addressed the concerns of child care in the eighties when scores of women re-entered or entered the work force. Elder care must become the child care of the eighties, for the sake of the patient, the caregiver, and the thousands of companies who employ caregivers. It is a corporate issue as well as a societal one. Thankfully, legislators are finally looking at ways to support the family caregiver. An example of this is the passage of the recent RAISE ACT. See this article for more info: https://www.nextavenue.org/raise-family-caregivers-act-will-help-family-caregivers/
For my part, I am going to continue to advocate for caregivers in Northeast Florida and beyond, support them with information to assist them and provide encouragement for this increasingly complex and difficult role.
From the Caregiver Action Network, Ten tips to help you! http://caregiveraction.org/resources/ten-tips
- Seek support from other caregivers. You are not alone!
- Take care of your own health so that you can be strong enough to take care of your loved one.
- Accept offers of help and suggest specific things people can do to help you.
- Learn how to communicate effectively with doctors.
- Caregiving is hard work so take respite breaks often.
- Watch out for signs of depression and don’t delay in getting professional help when you need it.
- Be open to new technologies that can help you care for your loved one.
- Organize medical information so it’s up to date and easy to find.
- Make sure legal documents are in order.
- Give yourself credit for doing the best you can in one of the toughest jobs there is!
Are you wondering how you are going to make things better for yourself in the New Year? If so, listen to what Carol O’Dell (author of “Mothering Mother”) recommends:
Three Caregiving Secrets for a New Year
A new year means you get a fresh start. Whatever happened last year stays in last year. That’s good news if you’re a caregiver. Letting go of the guilt, the frustration, and the less-than-stellar personal moments is the best gift you can give yourself.
Three Secrets for a Fresh Start to a Caregiving Year:
Go into 2014 choosing to care for your loved one. Choose all over again to steady a shaky hand, to share the everyday moments others are too busy for, and to be their advocate, their voice when they need you. Each day, make a choice. Choose to see the good in each person and in each day that comes your way. You have to be strong enough and brave enough to not worry if someone (even your spouse or parent) “likes” you. Sometimes you have to dig deep and do what’s best.
Caregiving is a lot like running a marathon–-with a bear chasing you. Pacing your caregiving journey is crucial. It’s human nature to react to a crisis with gusto, but going the distance takes a plan. Become a caregiving coordinator. You and your loved one need back up. Make short range and long range goals (goals are dreams with legs).
Nurture your life.
Remember that song, “You and Me Against the World”? Try singing it to yourself! Make a personal commitment to do something each day to invest in your physical, spiritual, financial, relationship and emotional well being. It’s easy to grow bitter or cynical when you’re exhausted and feel deprived. Start this year taking just a few minutes each day to address some facet of your own life.
You can do it! This is the year to take care of YOU!!
November 25, 2013
It’s time for Thanksgiving, you’re caring for your loved one, and adding to it all the chores of putting together a nice Thanksgiving for your family.
I hope you can slow down, spend time with your loved one, and let some of the “tasks” go.It’s the family time you will remember, not the “perfect meal.”
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” – Melody Beattie
I recently heard this comment from a friend of mine:
“I have three kids, and my mother to care for. Help!”
The first day of school is approaching, and you know that with all you have on your plate caring for your
mother, it will be a challenge to be there for you kids, care for your mother, and find time for yourself!
What do you do?
Here are some thoughts to help you:
Don’t forget that your mother isn’t the only one in the house that may have a need to see the
doctor. It’s so easy to get wrapped up in her schedule, her appointments, and trying to stay on
top of it all that it’s easy to forget that your child may need to get shots before school starts!
There’s nothing like taking your child to school the first day just to be told they can’t come.
Most importantly, remember that it’s all about priorities. You are a mother FIRST and a
caregiver second. Your children will always have to come before the parent you are caring for.
This will help you make decisions when two of you are needed at one time.
Example: There is only one “first day of school” each year. It’s such a special day for your
child. It’s exciting, and perhaps a little anxiety ridden for him/her. If he/she is of the age
that they still want you to drive them to school, do so. Find care for your mother for that
brief period of time. Call on family or friends to come over, home health agencies who
will offer care by the hour with no minimum, and adult day care (a great option to
consider for respite anytime!) Don’t miss this special day, and remember to take pictures.
Having your parent in the home means changes for your child, too. When appropriate, consult
your child before making big decisions that will affect him/her. Just because your mother is
coming to live at your house, doesn’t mean that your seven year old daughter will be excited
about giving up her room for “nana.” Ask her how she feels about it, talk to her about any other
Involve your mother in the evening activities of your child. This is a great time for making
memories. If you mother is alert, and oriented, let her help or supervise with homework. Your
child will have special memories of that time, and as for your mother…Who doesn’t need to be
The school year is a busy time for parents. There are PTA meetings, band practice, soccer
practice, and the list goes on. You can’t be the
BIG E, Everything to Everybody all the time.
Know your limits, and set limits for your child. This may be the year you have to limit them to
two extracurricular activities instead of the craziness of four. Time at home together as an
extended family is something to be cherished. You, your children, and your mother will value
that time together in years to come. Those are the memories people keep— of playing games
together at home in the living room— not the six places you rushed them to in one week.
Just as importantly, find time for you. Just you. You will need to re-charge in order to keep up
the pace. Whatever it is that does this for you, whether is 30 minutes alone reading a good book,
laying in your hammock in the back yard, having lunch with girls friends, etc., DO IT. You want
to stay physically and emotionally healthy to be there for all who love you.
Thank you for caring enough to be a caregiver!
Article submitted by Toula Wootan, “Toula’s Tips for Caregivers,”
Be sure to join Toula this Saturday as her guest for the first part of the show will be New York Times best-selling author, speaker and journalist Gail Sheehy. Two of the things she will cover are:
- How can we help caregivers empower themselves to see this journey as a potentially transformative experience? It’s challenging but has many positive things to offer.
- How can we encourage them not to “lose themselves” while caring for a loved one.
Robert Morgan, Elder Law Attorney will also be present to discuss The Alzheimer’s Association’s new program on financial and legal preplanning. Important to know if you are caring for someone with Alzheimer’s Disease!
It’s going to be a great show, don’t miss out! J Saturday at 11:00 am on AM 600, WBOB or www.wbobradio.com
Download the flyer here.
HOLIDAY STRESS REDUCTION FOR CAREGIVERS
Set priorities. Decide what is most important to you and your family, and focus only on just those things.
Stick with some holiday traditions, but let go of others. Hang on to what’s really important to you and your loved ones. This might be the year to put up a small artificial tree instead of your regular six foot real one. It’s OK, really.
Say no. You don’t have to go to every party. You don’t have to say yes to everything that’s asked of you. Remember, it’s OK to think about your needs now.
Ask for help. You don’t have to cook the entire holiday meal yourself. Asking everyone to bring a covered dish is most acceptable these days!
Use paper plates. Save yourself the work of washing dishes after the big dinner. There are some lovely but sturdy plates with holiday designs. Who really wants a lot of clean up anyway?!
Make shopping for gifts easier. Consider shopping over the Internet, so many places offer free shipping now, why face the crowds?! I like opening up my door and finding packages there-even when they aren’t for me!
Don’t overspend. Keep that promise to yourself this year! It will help decrease the stress.
Set aside time for yourself. I know it’s hard to do at such a busy time of year, but you can’t do anything better for yourself.
Take care of yourself. Do your best to eat right, get enough sleep, and get some exercise. Find a “Caregiver Buddy,” someone you can really talk to and count on for support. You probably have friends going through the same things you are. She or he may need to talk too!
Let the holidays be a joyful time of year by focusing on “just being ” with your loved one. Remember, you will have special memories of this very sweet time. This is especially important f you think it may be the last one together. If so, call your local community hospice, let them help you during this time.
Happy Holidays everyone!!
Ways to combat caregiver stress. Laugh!
Janice has been caring for her husband, Al, who has mild dementia for three years. His physical care is manageable, but she can’t leave him at “home alone” any more, and she’s finding that she has to calm him down throughout the day. She’s concerned his anxiety will escalate if she leaves him. She misses going to lunch with her girlfriends. She worries about the day when she may no longer be able to care for him. All these are caregiver stressors, and they take a toll on our health, our emotions, and our relationships…
We all know our caregiving role comes with many different types of stress. It is difficult to have your “world turned upside down” to accommodate the needs of another, no matter how much you love them and are committed to taking good care of them.
For the next several weeks I would like to offer a suggestion each week that promises to reduce the amount of stress you experience. My hope is that these ideas will bring a sense of refreshment and renewed energy to carry you through your day.
My first suggestion is to laugh more frequently. That’s right, Laugh. Laugh out loud! A good old belly laugh will always make you feel better.
Laughter is a physical, mental and spiritual tonic. Research indicates that children smile or laugh 400 times per day; adults smile or laugh 15 or fewer times per day. (Dr. Amen, amen clinics.com) Perhaps we need to be more like children and not take everything (including ourselves) so seriously!
Research also shows that laughter reduces the stress hormone cortisol (which also helps create belly fat!) and well as adrenaline. At the same time, it increases the “feel good” hormone, endorphin. Laughter has also been shown to improve your immune system as well as aid your digestion process.
So, you ask…what’s to laugh at? How about a funny movie (I still laugh at the old Peter Sellers movies!) or TV show? When was the last time you read the Sunday comics?
Take time to read a funny book, or call your friend who is good at telling jokes (everybody has one) and ask him to tell you the latest good joke he heard.
Learn to laugh at yourself, and the mistakes you make. So you spill the milk all over the table while pouring for your loved one… Laugh at your own clumsiness; laugh at your loved one’s clumsiness or the ridiculous things you now have to do together to make life work. Let’s face it, caring for a loved one can put us in some pretty funny positions! Janice and Al had a good laugh as they both had to crawl back to the bedroom after taking a fall in the bathroom. Nobody was hurt, and as Janice laughed about crawling like babies, they both went into hysterics
Caregiving’s Hidden Benefits | Paula Span
Could there be measurable benefits to your health, and to your brain in particular, from being a caregiver?
It’s practically become an article of faith that the reverse is true, that caring for an elderly relative is so stressful, relentless and draining that it takes a toll on your well-being. Some studies have shown that it can increase your risk of depression and heart disease, impair your immune system, even contribute to death.
That caregiving could actually provide some health advantage is so counterintuitive that when Lisa Fredman, a Boston University epidemiologist, first saw such results emerging from her study of elderly women, “I thought, what on earth is going on here?” she recalled. “I blamed myself. I thought something was wrong with my data.”
But over several years of studying the differences between caregivers and non-caregivers in four locations (Baltimore, Pittsburgh, Minneapolis and Portland, Ore.), Dr. Fredman and her colleagues found that while caregivers were indeed more stressed, they still had lower mortality rates than non-caregiversover eight years of follow-up.
In another study of about 900 women drawn from the same four-site sample, even those classified as high-intensity caregivers — because they performed more functions for their dependent relatives — maintained stronger physical performance than non-caregivers. On tests like walking pace, grip strength and the speed with which they could rise from a chair, the high-intensity group declined less than lower-intensity caregivers or non-caregivers over two years.
“That was a shocker,” Dr. Fredman said.
Now Dr. Fredman and her co-author Rosanna Bertrand, a health policy associate at Abt Associates in Cambridge, Mass., have gone back to this pool of women to look at their cognitive functioning. Here, again, caregivers did significantly better on memory tests than did non-caregivers followed over two years. Though the groups were about the same average age, in their early to mid-80s, caregivers scored at the level of people who were 10 years younger.
Along with what’s called “caregiver burden,” gerontologists and psychologists use the phrase “caregiver gain” to reflect the fact that this role, which often exacts such high costs, can bring rewards. But they’ve typically described those rewards in psychological, emotional and even spiritual terms: growing confidence in one’s abilities, feelings of personal satisfaction, increased family closeness. That caregivers can walk faster or recall more words on a memory test — that’s news.
Dr. Fredman has begun referring to this notion that caregivers are not invariably beaten down by their responsibilities as the “healthy caregiver hypothesis.” Taken together, her studies provide some evidence that caregivers, however stressed, may be stronger and stay stronger than women of the same ages who don’t undertake those tasks. The interesting question is why.
You can’t randomize studies like this, assigning some old women to serve as caregivers but not others. So it’s likely that a big part of the differences, Dr. Fredman said, stemmed from self-selection: Women become caregivers because they are healthy enough to shoulder that responsibility. “If you’re not healthy,” she said, “it goes to your daughter or daughter-in-law.” It’s not surprising, therefore, that even high-intensity caregivers have and maintain more physical strength.
It’s also true that Dr. Fredman’s definition of a caregiver sets a fairly low bar, including anyone who performs even one “instrumental activity of daily living,” such as helping someone with bill-paying or phone use. Hands-on help with bathing or toilet use is clearly more stressful, physically and emotionally; caring for someone with dementia can be particularly arduous.
But caregiving itself may provide real benefits. “Most caregiving activities require you to move around a lot,” Dr. Fredman pointed out. “It keeps people on their feet, up and going.” And exercise is known to improve physical health and cognition.
Moreover, Dr. Bertrand added: “Caregiving often requires complex thought. Caregivers monitor medications, they juggle schedules, they may take over financial responsibilities.” That, too, can ward off cognitive decline.
Plus there’s the whole matter of people benefiting from having a purpose. It’s hard to quantify, but it’s real.
So it’s fair to say that the question of how caregiving impacts the caregiver is more complicated and individual than we think. Both could be true, the burdens and the benefits, depending on how demanding the job is and a host of other factors.
That caregiving is a very tough job is beyond debate. “We don’t want to overstate this and say it’s good for caregivers and have governors across the country rush to cut support programs that help families,” said Steven Zarit, a Penn State gerontologist who has studied caregiving. (Of course, governors seem all too eager to do that anyway.)
Still, “it may not be as predictive of their demise as previously thought,” Dr. Bertrand said of elder care and caregivers. “There are potentially some positive aspects.”
Source: Paula Span