Toula’s Blog

June 2017: When the Caregiver is Sicker than the Loved One

Have you ever asked someone you know who is caring for a loved one how they are, only to hear the standard response, ”Everything is fine, I’m doing well,” when you know that’s not really true?

To be honest, I understand that response. I’ve been there myself.

I am the primary caregiver for both of my parents. Two years ago, I was in the middle of a caregiving crisis for months. My parents were still living by themselves at home, but mom was hospitalized twice that year for high blood sugar — four times the normal level.

Dad was doing his best to care for her, but the stress of caring for someone with dementia coupled with other illnesses was wearing on him. He had a previous stroke, so I worried about his blood pressure. He called me frequently at work, exasperated, asking for help. Then he fell and hurt his hip. He was hospitalized for several days.

A Moment of Truth

As I was trying my best to give them the care they needed and still meet my work responsibilities, I realized that I, too, was suffering. The stress I was under caused me to have a careless accident; thankfully, the injury was minor. I had also missed several medical appointments of my own that year.

The accident was my wakeup call. I decided to take some of the advice I give caregivers all the time in my role as a radio show host for caregivers to “take care of yourself so that you can take care of your loved one.” (Too bad I had to experience this to realize that my words of encouragement were accurate.)

Caring for someone is an act of love. With the rapid aging of our population, it is a role that will touch all of our lives like no other social issue yet. Because we are all living longer, the caregiving years can last up to 20 years or more. It is not uncommon these days to encounter caregivers in their early 80s still caring for a parent.

The Emotional and Physical Cost of Caregiving

Caring for a family member often takes a tremendous toll on the health and well-being of the caregiver. Research bears out that many caregivers neglect their own health while caring for their loved one. It fact, studies show that caregivers are at a much higher risk than others for diabetes, depression, stroke and other illnesses.

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.

Those percentages alarm me. Why is this happening?

Putting Your Needs Second

I believe there are several factors at play. Many caregivers find it hard to carve out time for themselves, to go to their doctor or to other medical appointments. I’ve talked to so many who have told me, “Sometimes it’s just easier to ‘back burner’ my own health; I’ll take better care of myself when I’m no longer caring for my loved one.”

Let’s face it, when you’ve been to eight or nine  medical appointments in a month for your loved one, the idea of going to another, even for yourself, is sometimes just too much. (Yes, I’m guilty.)

When you’re working full time and caring for aging relatives, you ask yourself “How much more time can I take off from work?”

For many, caregiving is a 24/7 role, one that encompasses all aspects of their lives. For those over 70, spousal caregiving is most common. It is this group that often suffers the most.

‘Didn’t Know Where to Start Looking’

I recently talked to a 93-year-old man who had been caring for his wife for five years in their home, following her devastating stroke. He never went anywhere other than to her medical appointments or the grocery store. He had no outside assistance, and didn’t know where to start looking.

Like many spouses caring for their loved ones, he had illnesses that he was ignoring. It was difficult, but I finally managed to get him to agree to have an outside agency come into the home and support him.

Sadly, even with this assistance, he died before his wife. I often wonder if the outcome would have been different if he had been able to get help earlier, and find the time to care for himself.

So, how can we help caregivers who are not doing well themselves, yet are determined to stay the course and care for their loved ones no matter what?

Doctors: Listen to the Caregivers

My first recommendation is for doctors to listen to the voice of the caregiver when he or she brings a loved one in. The caregiver can provide valuable information that may not otherwise be apparent or that the patient may not choose to divulge.

Treatment should be a collaborative process, or to put it another way, “patient- and family- centered.” There should be open sharing of information and shared decision-making. The family should be supported.

Physicians and other health care professionals must look beyond the patient, to the caregiver. They should ask how the caregiver is doing and what the caregiver needs. Often, it’s just assumed that the caregiver chose this role and wants to continue in it. An assessment from the caregiver may reveal something entirely different.

Prepare Caregivers Better

Secondly, since most caregivers don’t have time to plan this role, but are thrust into it, it would be great to see hospitals and other health care organizations give proper instruction on how to care for their loved ones. In that way, they could be better prepared.

Lastly, I’d like to see preventative care for caregivers. It could be as simple as classes on how to cope with the stress of being a caregiver, emphasizing self-care and respite. There is an excellent opportunity for private, public and nonprofit institutions to engage in pro-active partnerships to address this need.

To quote Susan Reinhard with AARP Public Policy Institute, “We have to do something to address the needs of caregivers in our nation. If we don’t, we may be headed towards a new public health crisis.”

 

January 2017: Caregiver Burnout: It’s real!

Caring for a loved one can be physically, emotionally and spiritually exhausting. The word I have used to describe how I’ve felt in the past is depleted.  Nothing left to give.  Some refer to it as caregiver burnout.  Have you ever felt like this? If so, you are certainly not alone. It’s so very common.  Here are a few symptoms to let you know if you are experiencing caregiver burnout:

• Overreacting to minor nuisances
• Feeling constantly exhausted
• Losing interest in work
• Decrease in productivity of work
• Withdrawing from social contacts
• Increasing use of alcohol or stimulants
• Change in eating patterns
• Change in sleeping patterns
• Increasing use of medications for sleeplessness, anxiety, depression
• Inability to relax
• Scattered thinking
• Feeling increasingly resentful
• Being short-tempered with care recipient frequently

Do you see yourself above? If so, perhaps it’s time to take a step back, or perhaps take a real time out. How, you say? If you don’t have family or friends who can step in, there are many support services to help you do this. Many assisted living facilities offer respite, a sort term stay. There are many adult day care centers in our area, and we have many companion/sitter agencies. Perhaps you qualify for Aging True- they have a team of volunteers who can sit with you loved one occasionally. Whatever it takes, take a break so you can rest, do something for yourself, renew your perspective, and refresh. It’s essential. I like the saying “You can’t pour from an empty cup.”

I am the primary caregiver for both of my parents, and work full time, leading caregiving initiatives!  I keep these eight things in mind to help me: Sunshine, Fresh air, Exercise, Prayer, Water, Diet, Rest, and Laughter.  Do they resonate with you?  They are simple, but make a big difference. So does having fun with friends! Don’t forget that.

I hope these help you. My radio show, Toula’s Tips for Caregivers is now heard on http://www.spreaker.com/user/toulastipsforcaregivers  or https://www.toulastipsforcaregivers.com/

 

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

10 Tips for Family Caregivers

1. Seek support from other caregivers.  You are not alone!
2. Take care of your own health so that you can be strong enough to take care of your loved one.
3. Accept offers of help and suggest specific things people can do to help you.
4. Learn how to communicate effectively with doctors.
5. Caregiving is hard work so take respite breaks often.
6. Watch out for signs of depression and don’t delay in getting professional help when you need it.
7. Be open to new technologies that can help you care for your loved one.
8. Organize medical information so it’s up to date and easy to find.
9. Make sure legal documents are in order.
10. 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:

Choose.

 

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.

 

 Pace yourself.

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

 

September 2013

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

possibilities, etc.

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

needed?

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,”

www.toulastipsforcaregivers.com

 

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!!

Toula

 

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