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You are here: Home / Archives for Agile Caregiving

Agile Caregiving

Oct 19 2020

Why imperfect family caregiving is such a treasure

As I was growing up, my mom and dad certainly wanted me to do well.

They gave me incredible support and encouragement, always reminding me they were proud of me.

However, within that context, they emphasized that it wasn’t the outcome that mattered most—but the effort I applied to do my best.

“Sue, it’s not whether you succeed that matters to us,” they’d say. “Just that you give your best effort to whatever you do.”

Okay, maybe that’s not an exact quote, but it’s pretty close.

That sentiment gave me comfort and supported my self-esteem then—and helped to form the foundation of my life in the years after.

I view family caregiving through a similar lens.

I couldn’t begin to count how many people I’ve provided care for throughout my life—and most of that has been as a professional caregiver within various nursing roles.

Within such an approach is the more polished caregiver who is mostly rested, supported by a team of colleagues, and armed with the experience and expertise to get the job done.

Compare that scenario to the family caregiver who is often exhausted, overwhelmed by the need to handle so much on their own, and may have no idea what in the world they should do next.

It may seem that the former would be preferable to the latter, but a family caregiver is a treasure because they have the secret ingredient that no one else can provide: a depth of love and commitment that gives them the motivation to try.

When I refer to family caregivers, I’m not just talking about those who are related by biology or marriage—though the majority are.

But anyone who cares enough to step up to the plate to help a loved one in need.

I’m also not referring strictly to caregivers who care for a loved one at home.

Doing so isn’t always possible and having a loved one reside in a facility setting of some type may be the best option for everyone involved.

The family caregiver in this context also is often exhausted and overwhelmed—since there are ongoing challenges of advocacy and worry related to ensuring that a loved is safe, enjoys optimal quality of life, and receives the excellent and compassionate care they deserve.

In today’s environment of COVID-19, this is even more the case, when families often aren’t permitted to visit in person but must do all that advocating and worrying through a window or over the phone.

Imperfect family caregiving is such a treasure.

So what does my parents’ philosophy about effort and achievement have to do with family caregiving?

I’m pretty sure you’ve guessed it by now.

If you’re a family caregiver in any context, it’s not whether or not you do things “perfectly” that matters—but the fact that you care enough to wade into the challenges despite your “imperfect” efforts and give your best to try.

To me, that just speaks volumes about love. I bet it does to your loved one, too.

And if you’re a former family caregiver like me, beware the hazards of engaging in a retrospective critique.

It’s common (and typically not helpful) to look back and think we should’ve done this or that differently when it comes to a loved one’s care—which is easy to do when you’re not in the midst of it.

Who you are today in your more rested and objective state is not who you were then when you were swamped by challenges and just doing your best.

What matters most is that you loved enough to try.

In my case, I was blessed that my mom always appreciated my efforts, even if they were quite imperfect at times.

That’s because she knew how much I loved her and I knew how much she loved me—which is what mattered most to us both.

Family caregiving is a journey that you and your loved one travel together.

Your love for each other is a treasure to cherish as you accept the imperfections that are just part of the trip.

This post is adapted from Sue’s Perspectives column in the latest edition of The Empowered Traveler™ Newsletter. If you’re not already a subscriber, you can do that here: Subscribe to Sue’s newsletter.

Written by Sue Montgomery · Categorized: Agile Caregiving, Perspectives · Tagged: Caregiving, Grief, Perspectives

Feb 18 2020

Advance Directives for Dementia vs Standard Advance Directives: What’s the difference?

Advance directives for dementia have arrived on the scene—as I highlighted in a link to a Kaiser Health News (KHN) article in the February 1st edition of my newsletter.

Dementia is a serious and growing concern in our country and around the world. According to the World Alzheimer Report 2015: The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost, and Trends, the number of people living with dementia is forecasted to grow from 47 million in 2015 to 132 million by 2050.

Its onset and progression can be a brutal and heart-wrenching process for both the individual experiencing its effects—and the family members who love them. So, it’s not surprising that this new advance directive option has become available.

But it made me wonder: What’s the difference between traditional advance directives and an advance directive for dementia?

The role of advance directives

After all, the purpose of advance directives is to make an individual’s wishes known about what type of care they would or would not want if they were unable to speak for themselves.  

Since the cognitive impairment that’s involved with dementia often results in a person being unable to speak for themselves, I guess I assumed that I’m covered by the living will I already have in place.

But if there is a need for one specific to dementia…maybe not.

So, I did a little research.

Advance directives for dementia vs standard advance directives

In a December 2017 essay in the JAMA (Journal of the American Medical Association) Network, “Advance Directives for Dementia: Meeting a Unique Challenge,” the authors describe their perceived need for an advance directive for dementia:

“Standard advance directives are often not helpful for patients who develop dementia. Dementia is a unique disease from the standpoint of advance directives. It usually progresses slowly over many years and leaves people with a long time frame of diminishing cognitive function and loss of ability to guide their own care. Advance directives typically address scenarios such as an imminently terminal condition or a permanent coma, but they generally do not address the more common scenario of gradually progressive dementia. …

Medical decisions for patients with dementia are typically made by health proxies because patients with dementia, although it progresses slowly over many years, at some point quickly lose decision-making capacity. These proxies often experience enormous anxiety trying to guess their loved ones’ wishes. A dementia-specific health directive could lessen this burden by providing some clarity about patients’ values and goals that could then help support decision making.”

From Gaster B, Larson EB, Curtis JR. Advance Directives for Dementia: Meeting a Unique Challenge. JAMA. 2017;318(22):2175–2176. doi:10.1001/jama.2017.16473

Advance directives for dementia aren’t all the same

Having watched this painful scenario play out too many times in both my professional and personal life, my first-glance impression is that completion of an advance directive for dementia might be something I’d consider for myself.

However, as the KHN article notes, this new option is controversial, too—which means my first glance impression might not be capturing all the nuances involved.

The article refers to an advance directive for dementia created by End of Life Choices New York (EOLCNY), which allows an individual to specify their wishes regarding oral feeding by someone else if they have advanced dementia. Here’s how the site describes this:

“EOLCNY has developed the advance directive in response to growing demand for clear language to address specific needs not adequately covered by health care proxies and living wills. The directive for receiving assisted oral feedings has two options:

Option A refuses all oral assisted feedings once the patient is in an advanced stage of dementia and the ability to self-feed and make decisions has been lost.

Option B permits assisted oral feeding in advanced dementia but limits that provision to comfort-focused feeding that must be stopped when the patient becomes disinterested or unwilling to be fed.”

From https://endoflifechoicesny.org/directives/dementia-directive/

The KHN article describes why this wouldn’t work in a skilled care facility, since regulations (thankfully) require that patients be fed.

I don’t agree with the EOLCNY approach, since I can’t imagine not feeding someone just because they’re not able to cognitively manage it themselves—or putting a loved one in such a painful position of not helping me if I required assistance to eat.

However, there’s another version of a dementia advance directive, created by the lead author on the JAMA Network article, Barak Gaster, MD. Dr. Gaster refers to his version as a “Dementia Directive” and it doesn’t specifically refer to oral feedings at all.

Instead, it provides various options for three stages of dementia: mild, moderate, and severe. The options for all three stages are the same, which you can read with a free download of the form. I like this version much better, since it is more detailed and doesn’t say anything about oral feedings.

State-specific issues

Since advance directives are state-specific, another question I had was whether these new directives are legal and honored in all states. I figured that was one of the questions that would be answered on the FAQ page on Dr. Gaster’s site, and was happy to find that to be the case:

“The Dementia Directive available here is a written communication to help guide those who might need to make medical decisions on your behalf in the future. As such, it is a way to record your wishes. The guidance it provides is not legally binding. Family members and physicians will still need to address clinical situations as they arise and decide how a dementia directive like this might provide guidance in a given situation. That’s why it is important to talk to those closest to you (who might later help make decisions about your care) about your wishes, so that they understand as clearly as possible what your wishes would be.”

From https://dementia-directive.org/faqs

In this context, the Dementia Directive is described on the site as both a standalone document and as a supplement to traditional advance directive forms.

This new initiative is already gaining steam—with KHN reporting that Dr. Gaster’s version, published in 2018, has been “downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.”

Likely, there will be a lot more momentum on this front—especially with National Healthcare Decisions Day (NHDD) around the corner on April 16th.

Talking about end-of-life issues ahead of time is so important, and something I’m passionate about—which is also why I’ve become a Conversation Champion with The Conversation Project.

As I close, one caveat I need to add is that some of the organizations referenced here support medical aid in dying initiatives (aka physician-assisted suicide)—which is not something I support.

Additional Resources

If you want to learn more about advance directives, here are a few websites that can help you get started:

  • The Conversation Project: Dedicated to “helping people talk about their wishes for end-of-life care.”
  • Five Wishes: A program of Aging with Dignity.
  • PREPARE for your care: Aims to help make medical decision making easier for people and caregivers. Includes free state-specific advance directive forms in both English and Spanish that you can download.
  • National Hospice and Palliative Care Organization’s (NHPCO) CaringInfo: Includes general information and free state-specific advance directive forms that you can download.
  • National POLST Paradigm: Includes detailed information about Physician Orders for Life Sustaining Treatment (POLST), as well the status of each state regarding its use of POLST.
  • Advance Directive for Dementia: “A simple way to document the medical care you would want if you had dementia.” Includes a free download of the Advance Directive for Dementia form. 

How about you?

What do you think of the new Dementia Directive? Please join the conversation by commenting below.

The information provided here is for educational purposes only. It is not intended to be used as medical, nursing, legal, financial, tax or any other type of professional advice. You should always discuss your individual needs with the appropriate expert.

Feature photo by Helloquence on Unsplash.

Written by Sue Montgomery · Categorized: Agile Caregiving, Graceful Aging, Peaceful Dying · Tagged: advance directives, dementia

Feb 13 2020

How changing the language of family caregiving can benefit us all

My plunge into the language of family caregiving began when I spotted a post on Twitter recently, as I noted in my Perspectives column this week.

When caregiving expert Debra Hallisey wrote an article to express her concern about  how the “parenting our parents” reference is an all-too-common phrase, I chimed in to agree and add a cringe-worthy reference of my own: the “burden of family caregiving.”

Similar to what Debra did, I DuckDuckGo’d (my preferred method of search) “burden of family caregiving” on my phone and received first-page results of six research studies published in academic journals using this burdensome term.

While such evidence-based descriptions of the need for more support for family caregivers is a positive thing, I worry about the negative connotations used to communicate it.

This reference is also commonly used in consumer-focused outlets with a cross-section of readers—including those who may either be caregivers or someone receiving care.

Whatever the context, such dark language suggests to caregivers that the critical support they’re providing for their family members should be defined as something overly difficult to bear—and it communicates to those receiving care that they have indeed become what they always feared they would someday be: a burden.

Caregiving language matters

As I noted in my column, I’m not trying to minimize how challenging caregiving can be—because I’ve been there myself. But I think language matters and influences our perspectives more subtly than we’re aware.

In a post entitled “How Our Words Impact Others,” leadership expert Michael Hyatt agrees: “Our words carry enormous weight. More than we sometimes think. They often impact people for decades, providing either the courage to press on or one more reason to give up.”

To me, “burden” is such a negative word.

Such a woe-is-me, how-did-I-get-into-this-mess kind of sentiment.

An Eeyore expression that Winnie-the-Pooh would’ve chided his friend for.

Unfortunately, that term is all too common—perhaps because our elders are surrounded by a “me” society which frequently describes them as such.

If we give our older loved ones the message that they’re a burden or should be treated like children, we add to the pile of losses they experience as they age.

Instead, they should be honored, respected, and cherished as the family matriarchs and patriarchs we’re blessed to still have in our midst.

Family caregiving as a team

Pretty woman in purple top and her daughter smiling

My mom didn’t plan to live with us because she wanted to maintain her independence and didn’t want to be a “burden.”

I’m so grateful she was willing to reconsider after changes to her health, an invitation from my husband to live with us (she said my invitation wasn’t enough to get her to agree), and a remodel to our home so she could have her own apartment on one end.

We were blessed to be able to do all of that as a team, which allows me to look back and savor the gift of having had her with us for nearly a decade. She was quite independent for many years, but as her health declined, it was wonderful for us all to be under the same roof so she could have the help she needed—and I could worry less.

Getting to care for my mom was a blessing and privilege beyond what I can describe. The one thing I really needed to do in this life.

Was it a challenge for us both? At times, of course.  

But that’s true for most things in life filled with value and reward.

But a burden? Absolutely not.

I just can’t imagine referring to that precious season of caregiving in such a negative way—which is why I’m put off by caregiving contexts that do.

We were fortunate to be able to do things the way we did, and I don’t think we were all that unique. There are so many adult children taking wonderful care of their parents in one way or another and grateful to be able to do so.

I doubt many of them would use a language of “burden,” so I wonder how this negative sentiment got started in the first place.

Family caregiving and the circle of life

Family caregiving is a challenge for sure, but calling it a burden is something I just can’t do. Instead, I see family caregiving as part of the circle of life.

For most of us—in my case for sure—our parents went to extremes to care for us without ever referring to us as a “burden.” So why, when they need help down the road, does society propose that caring for them should be defined as a hardship that appeared out of nowhere?

Did we not think they would get older and someday need care?

Do we think we’re not getting older and will someday be in the same boat?

Now, I’m not trying to oversimplify things or suggest that every family should be able to make the shift to caring for an aging parent in their home full time, since there are so many variables that play into that scenario.

And when family caregivers have a loved one residing in a skilled care facility, the challenges are stressful in different ways—including the need to trust someone else with their loved one’s care. Many long to care for their mom or dad at home, but sometimes it’s just not possible, and that can be heartbreaking, too.

Also, I know there are families in which dynamics are much more complex than what I’m describing here, and I’m not trying to minimize or speak to that.

Instead, my point is that by using negative terms to describe a natural and predictable season of life, we do everyone a disservice—including ourselves.

When it’s our turn

Unless we die suddenly, we’ll likely need care, too, and I predict I’ll be a challenge for whoever ends up with that tall task. But it will break my heart if I overhear someone referring to me in my final season of life as a burden.

We live in dicey times where language is concerned—and the negativity in our world can influence us more than we realize. That’s one reason I recently left Facebook—and why I’m concerned about many dynamics in our society today.

I know the reality is that caregiving can be overwhelming, exhausting, and financially draining for many families—so there is a dire need for more support. Legislative and other efforts to garner it are essential.

But it’s time to stop burdening us all with such burdensome terms in reference to a natural and expected season in the circle of life—which can be a sacred and beautiful one, too.

That is, if we’ll only embrace it in more positive terms—and the grace and love we’ll someday need for ourselves.

How about you?

What are your feelings about the language of family caregiving? Please join the discussion by commenting below.

Post feature photo by Rod Long on Unsplash.

Written by Sue Montgomery · Categorized: Agile Caregiving · Tagged: Caregiving

Feb 10 2020

Burdens vs Blessings

On Twitter recently, I saw a post regarding an article by caregiving expert Debra Hallisey in which she described a phrase in the context of family caregiving that makes her cringe: “Parenting Your Parents.”

Ugh. That one’s like fingernails on a chalkboard for me, too.

Over the years of my clinical career, I’ve watched way too many adult children mow over the autonomy and opinions of the elders they’re supposed to honor and respect.

This dynamic both frustrated and saddened me, as I wondered if these adult children would want to be treated in the same way if—and when—they ended up in the same shoes.

When I was Mom’s caregiver, she was in charge, and I was her helper.

Neither of us would’ve had it any other way and we loved being a team to make sure that was the case.

That’s why I had to jump into that Twitter conversation to agree with Debra’s concern—and add another cringe-worthy reference that makes me shake my head: the “burden” of family caregiving.

Seriously, a burden?

A challenge, yes.

Overwhelming at times, yes.

But so are many things in life that are filled with value and beauty.

Getting to be Mom’s caregiver was one of the greatest blessings I ever experienced.

A privilege that’s difficult to put into words.

Of course it was hard at times.

Of course I got tired.

And she certainly did, too.

But there wasn’t a single thing I did to take care of my precious mom that she wouldn’t have done for me a thousand times over if I was the one in need.

Plus, as a parent—she already did!

All the times throughout my life, when I was sick or hurt or afraid or confused or just messing things up, she and my dad went to extremes to make sure I had what I needed—and most importantly, they made sure I knew how much I was loved.

I’ve tried to participate in a few family caregiving forums, but have been put off by the climate of negativity I sometimes find there.

What some see as a burden was such a blessing in my world.

Those years with Mom are a perpetual gift—both during the time we had to enjoy them, and in the years since she’s been gone.

I know everyone’s situation is different, and I’m not trying to minimize how hard caregiving can be.

Plus, I know I’m not in the midst of the daily effort at this point in my life, which gives me a different perspective than someone who’s still trying to juggle the multiple needs and challenges involved.

But I think it’s easy to forget in the midst of such dynamics that unless we die suddenly, we’ll likely need care too—which is a good reason to embrace the tenants of the Golden Rule.

As with most things in life, if we allow the negativity around us to seep into our pores, we’re more likely to miss the beautiful things that are happening before our very eyes.

This post original appeared in the 2/8/2020 edition of The Empowered Traveler™ newsletter. Please subscribe below.

Feature photo by Erik Witsoe on Unsplash.

Written by Sue Montgomery · Categorized: Agile Caregiving, Perspectives · Tagged: Caregiving

Jan 09 2020

Living with chronic illness: Why some cope and others don’t

Q&A – Psychologist Vicki Helgeson

Living with chronic illness: Why some cope and others don’t

What helps some people diagnosed with cancer, heart disease or diabetes stay relatively happy and healthy, while others are devastated? Psychologist Vicki Helgeson explains the traits and mindsets that can make the difference.

By Katherine Ellison

11.19.2019

People everywhere are living longer than ever. The average global life expectancy has more than doubled since 1900 and now exceeds 70 years. Vaccines and antibiotics have reined in scourges like polio, tuberculosis and pneumonia, which can strike young and old people alike. This helps explain why diseases that have long been more common in the elderly, such as cancer and cardiovascular ailments, are today leading causes of mortality, making up more than 35 percent of all deaths. In the United States, roughly half of all adults suffer from at least one sort of ongoing, incurable illness, including cancer, multiple sclerosis, rheumatoid arthritis and diabetes.

Considering how painful and disabling these conditions can be, it’s no surprise that people with chronic illnesses are two to three times more likely than the general population to suffer from depression. That risks a downward spiral in which a patient may stop keeping up with treatments and other self-care, such as diet and exercise, and sink further into despair as health inevitably declines. Yet people differ dramatically in the way they respond to being ill. While some surrender hope, others become determined to do all they can to maintain or improve their health, with some even finding silver linings in their diagnoses.

Vicki Helgeson, a psychologist at Carnegie Mellon University, in Pittsburgh, Pennsylvania, has spent more than 25 years studying how people adjust to chronic illness. “Most people are amazingly resilient and find successful ways of coping with whatever stressors life throws their way,” she says. Still, a large minority with the same severity of illness will suffer more, both physically and emotionally. Studies show that the factors that make the difference include gender, personality traits and, perhaps most importantly, relationships with friends, family and peers.

Writing in the 2017 Annual Review of Psychology, Helgeson and graduate student Melissa Zajdel described evidence from more than 150 studies analyzing what makes some people more resilient and others more vulnerable to chronic illness. Knowable recently spoke with Helgeson about what she has learned from that literature as well as from her clinical experience supporting chronically ill patients. This conversation has been edited for length and clarity.

Why is there such a wide range of outcomes for people living with chronic illness?

How patients fare after being diagnosed with chronic illnesses depends a lot more on them than on their doctors. The patient has to be taking medication, monitoring diet, exercising and following up with medical appointments, all of which can make a big difference in how well he or she does, both psychologically and physically.

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At the same time, having a chronic illness will mean different things to different people, and to different people at different stages of the disease. For some people, having a chronic illness completely changes the way they think about themselves; among people who are equally physically impaired, some will see themselves as much more altered than others. For instance, one study of men with prostate cancer showed that one-third said they felt less masculine. In a study comparing heterosexual women and lesbians with breast cancer, the lesbians reported less concern about their appearance.

How many people are we talking about?

These are big numbers. About 85.6 million people in the United States are living with some cardiovascular disease or the aftereffects of a stroke. Some 14.5 million have a history of cancer or are living with cancer. And roughly 29.1 million have been diagnosed with diabetes.

Additionally, some 24 million US adults, more than 10 percent of the adult population, are limited in their activities because of arthritis. Just over 1 million are living with HIV, and another 1 million people have been diagnosed with multiple sclerosis.

How did you come to be interested in this subject?

I’ve been interested in gender and health for many years. Back in graduate school, I wrote my dissertation on the role of masculinity in heart disease; I was really intrigued by the ways we socialize men that might harm their health. For instance, we encourage men to be independent and physically and mentally strong, which translates into men not seeking help when they need it, whether that help is going to a doctor or simply disclosing a problem to someone.

In more recent years I’ve zeroed in on the personality traits of “agency” and “communion” in health, in particular “unmitigated agency,” more often found in men, which is a focus on the self to the exclusion of others, and “unmitigated communion,” more often found in women, which is to focus on others to the exclusion of self. Both of these characteristics can play a large role in physical health in general and in particular how someone copes with chronic illness. For example, a woman who is chronically ill will often try to continue to care for her family, even at the cost of caring less well for herself.

Many of the studies you cite indeed suggest that gender makes a big difference when it comes to chronic illness, both in the kinds of illnesses we get and the way we react to them.

Research shows that compared to men, women have more nonfatal chronic illnesses, mainly autoimmune diseases such as lupus, rheumatoid arthritis and multiple sclerosis, while men have more chronic illnesses that are likely to be fatal, such as heart disease and cancer. So overall, women live longer than men, but women are also more likely than men to live with disease.

And you have also found that, in general, women who are chronically ill have a harder time with it emotionally than do men.

We did find this to be the case, but it’s complicated. It’s true that when women are chronically ill — for instance with something like type 2 diabetes — on average and compared with men, women report being more depressed and more physically limited due to the illness. (There are a few exceptions to this rule: One study showed that men with heart failure perceived their health as being worse than women with similar illness.)

The complication is that even when we’re physically healthy, women suffer more from emotional problems than do men. In the general population, women are twice as likely as men to be depressed. So I can’t say that women with chronic illnesses are more depressed than men due to the illness, specifically. The research just isn’t clear. What I can say is that the way we socialize males versus females can have a negative impact on how both men and women adjust to chronic illness. For women, the issue is that we may try to resume our role as caregivers. For men, the issue is they may try to appear strong and self-reliant and be unwilling to ask for help.

One particularly striking finding you report is that a woman will suffer more than a man whether she herself is ill or is caring for a man with a chronic illness.

This may be because, in general, women are socialized to be more other-focused than men, while men are socialized to be more self-focused. If you’re more other-focused, it may be more difficult for you to take care of yourself when you’re ill. You may also be more vulnerable to emotional contagion when your spouse is ill.

Wasn’t the feminist revolution supposed to have done away with all that self-sacrificing?

There have definitely been some changes. Women are socialized now to have more agency and be more assertive — but not at the expense of giving up that “other” orientation.

What about race as a factor in how people fare with chronic illness?

It clearly has an effect. Black people with diabetes, for instance, on average report greater distress related to their condition and greater interference with their daily activities than do whites with the same illness. Non-whites with heart disease on average have a greater decline in functioning over five years. But it’s hard to get clear explanations of what is happening here, since race and ethnicity may also be linked to lower incomes and the unhealthy environmental conditions that can come with them, from more pollution to poor-quality medical care.

When you think back on all the research you have done, including for your review article, what has most surprised you about how people cope with chronic illness?

I’ve been struck by how important it is for someone facing a diagnosis to have some sense of control. People who have a high sense of control tend to believe that they can influence their health. So when faced with chronic illness, a person with a high sense of control is more likely to take actions that might actually influence the course of their disease — such as taking medication and exercising, and so on.

You can’t control everything of course, and you don’t really get to decide what you can control, but when you figure out what you can, it enhances your feelings of self-worth and reduces distress. It’s like the Serenity Prayer, about accepting what you can’t change while having the courage to change what you can and the wisdom to know the difference. And then you might ask, what happens if treatment fails and the disease comes back? Are you worse off having believed you had control? No, you’re not. It’s always better to figure out a way to have some control. If you have a high sense of control over what happens to you, you’ll try harder to take care of yourself and manage the disease.

I remember meeting a woman who was undergoing angioplasty, a procedure intended to open the coronary arteries. Some portion of these operations fail in the sense that the benefits don’t last that long. After three months, the problem returned, and she chose to try angioplasty for a second time. It again failed to take. She then had a third angioplasty, and once again ended up requiring further treatment. Finally she had bypass surgery, and you might think she’d have said should have just had the bypass surgery at the beginning, but instead she said, “I’m just thrilled there was another available treatment!” That kind of attitude can be quite helpful. I don’t know if people with that attitude live longer, but they’re happier and healthier while they’re living.

What other sorts of attitudes can make a difference?

I subscribe to Shelley Taylor’s cognitive adaptation theory, which characterizes the kind of person most able to deal with a chronic illness. Generally, it’s the kind of person who has a high sense of self-esteem and self-worth, who sees his or her life as worthwhile. This kind of person may even be more likely to find benefits in the seemingly bad news of a diagnosis.

Twenty years ago I did a lot of work on breast cancer. A common response was for women to say, quite seriously, that it was the best thing that ever happened to them. One woman actually said that given a choice between cancer and winning the Tour de France, she’d choose cancer, because she had learned so much from it. Another said her illness had inspired her to leave her husband — she wouldn’t have done that otherwise. Someone else might say having a heart attack was a blessing that brought him closer to his family, made him slow down at work and pay attention to more important things. With respect to diabetes, someone might say I now pay more attention to myself, to exercising and eating better.

But what do you think about Barbara Ehrenreich’s argument in her book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America? She wrote it after being diagnosed with breast cancer, when she says she was made to feel that if she didn’t get better, it was her fault for not being optimistic enough.

Yes, I agree that can be harmful. It’s helpful for people to find the good in the bad, but doing so can actually also be a form of avoidance. It’s a problem we have in our culture where we don’t want to hear about bad news and stress, and then someone might react against that, saying, “This is crazy; I’m trying to tell you I’m upset about something and you say I should just focus on the good things.”

There are data that show this can be distressing to people with cancer. It makes them feel not validated and not heard. People want to be able to disclose their concerns and feel listened to and understood — they don’t want people to invalidate their feelings by trivializing their problems or telling them to cheer up.

So is there one single thing that can make the most difference in how we cope with chronic illness?

Yes! Having good relationships! It’s very important to find at least one person who will listen to you and let you be yourself. They don’t have to have the same illness.

There is a lot of research showing that being embedded in a social network is good for psychological health and physical health. And there are all kinds of reasons for that. Being involved in relationships means that there is someone to notice if you are having a problem, someone urging you to go to the doctor or encouraging you to eat healthy food, someone depending on you, which motivates you to take care of yourself, someone to listen to you, someone to depend on for assistance. Not everyone has this in their lives, which is unfortunate, as some large-scale studies have even linked such relationships with reduced mortality.

10.1146/knowable-060419-2

Katherine Ellison is a cancer survivor now coping with the terminal illness called life. Her most recent book is Mothers & Murderers: A True Tale of Love, Lies, Obsession … and Second Chances.

This article originally appeared in Knowable Magazine, an independent journalistic endeavor from Annual Reviews. Sign up for the newsletter.

Knowable Magazine | Annual Reviews

Written by Sue Montgomery · Categorized: Agile Caregiving, Graceful Aging · Tagged: Agile caregiving, Graceful Aging

Jan 08 2020

Essentials for Agile Caregiving: Laying a Foundation

Caregiving is hard work.

According to a 2015 caregiving report by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP), family caregivers are getting younger, more diverse, and experience high levels of stress (AARP, NAC).

With the rapid growth of our aging population, grim predictions abound that in the years ahead, we’ll face an extreme shortage of family caregivers. As Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America notes, “As previous AARP research has shown, we’re facing a caregiving cliff. By mid-century, there will be only three family caregivers available for each person requiring care…we need to provide support for existing caregivers who are underserved by the current long-term services and support system” (PR Web).

Look familiar?

In addition, the report gives highlights of today’s caregivers, which may look similar to your situation:

  • 82% care for one person who is likely either living with the caregiver or living within 20 minutes of the caregiver.
  • 60% of caregivers are female. The typical caregiver is a 49-year-old female caring for a 69-year-old female relative, most likely her mother.
  • 40% of caregivers are male.
  • 34% of caregivers have a full-time job, while 25% work part time. Caregivers who work do so for 34.7 hours per week on average.
  • Caregivers have been caring for 4 years on average, spending 24.4 hours per week helping with activities like bathing, dressing, housework, and managing finances.
  • 32% provide at least 21 hours of care a week, on average providing 62.2 hours of care weekly.
  • 38% of caregivers report high emotional stress from the demands of caregiving (PR Web).

If you’re a family caregiver, likely little of that is news to you.

Mom and Me—Our Caregiving Journey

Having been the primary caregiver for my mom for many years, it’s not news to me, either. However, research like this is critically important to help form public policy to increase access to resources and support for family caregivers. And for those of us with personal experience, it validates the blessings and challenges of caring for a family member.

And that’s what my journey with Mom was. A blessing. And sometimes a challenge. Certainly for us both.

But what a ride. What a privilege. What a gift.

I loved the caregiving journey Mom and I shared.
Cruising for Mom’s 80th!

Mom died May 29, 2015 at 10:50 pm—in her own home with us, in her own bed, with me by her side. Caring for her in the final years of her life and accompanying her on her journey Home was the one thing I really needed to do in this life. I’m so grateful the Lord made that possible.

Betty J. Scott (1930-2015)

You and I—your caregiving journey

There are many wonderful resources available for family caregivers, and my intent is certainly not to compete with them. Rather, I want to collaborate, to point you in the right direction for support and to add additional perspectives that I’ve gained as a daughter and caregiver for nearly ten years—and as a nurse for over three decades.

I promise to be as authentic as possible.

However, in that context, my priority will always be to honor and respect the privacy and dignity of others first. If I can share a story to make a point, I will. If not, I’ll find another way to do it.

Largely what will be available here will be based on your input and feedback. I have plans for what I intend to develop and provide in my offerings, but I want to be responsive to your needs, as well.

If it’s something that already exists somewhere else, I’ll help to steer you in that direction. If it’s something that needs to be created, I’ll dig in and begin to build. We’ll take this journey together.

Thanks so much for being here with me. I know if you’re a family caregiver, that your plate overfloweth, and your time is precious.

I’ll be praying for you, your loved one(s), and your journey together.

As for our journey, I’ll do my best to ensure you’re blessed with the support you’re looking for.

 

References

AARP, NAC. 2015 Report: Caregiving in the U.S. (2015, June). Retrieved from http://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf

AARP Public Policy Institute. Assessing Family Caregiver Needs: Policy and Practice Considerations. (2012, June). Retrieved from https://eldercareworkforce.org/files/caregiver-fact-sheet-AARP-ppi-ltc.pdf

PR Web. New Study Identifies Challenges for Family Caregivers, Caregiving Solutions Needed. (2015, June 04). Retrieved from http://www.prweb.com/releases/2015/06/prweb12765231.htm

This post is one of several that make up an edition of my Agile Caregiving series offerings.

Written by sue montgomery · Categorized: Agile Caregiving · Tagged: Agile caregiving

Jan 07 2020

Drumbeat Builds For A Peace Corps Of Caregivers

By Judith Graham – Kaiser Health News

Imagine a government program that would mobilize volunteers to help older adults across the nation age in place. One is on the way.

The Administration for Community Living, part of the Department of Health and Human Services, is taking steps to establish a National Volunteer Care Corps.

If it’s successful, healthy retirees and young adults would take seniors to doctor appointments, shop for groceries, shovel snowy sidewalks, make a bed or mop the floor, or simply visit a few times a week.

Older adults would not only get a hand with household tasks, but also companionship and relief from social isolation. And family caregivers could get a break.

Younger volunteers might get class credit at a community college or small stipends. Older volunteers could enjoy a satisfying sense of purpose.

There’s no question the need is enormous, as the ranks of the oldest Americans ― those age 85 and up, who tend to have multiple chronic illnesses and difficulty performing daily tasks ― are set to swell to 14.6 million in 2040, up from more than 6 million now.

Who will care for these seniors? More than 34 million unpaid family caregivers currently shoulder that responsibility, along with 3.3 million paid personal care and home health aides. (Medicare does not pay for long-term care services or non-medical services in the home.)

According to the Bureau of Labor Statistics, more than 1.2 million new paid jobs of this kind will be needed by 2028. But filling them will be hard, given low pay, difficult work conditions, limited opportunities for professional advancement and high turnover.

This notion of a domestic Peace Corps for caregiving, if you will, has been circulating since 2013, when it surfaced in a Twitter chat on elder care. In 2017 and 2018, bills introduced in Congress proposed a demonstration project, unsuccessfully.

Now, four organizations will spearhead the Care Corps project: the Oasis Institute, which runs the nation’s largest volunteer intergenerational tutoring program; the Caregiver Action Network; the National Association of Area Agencies on Aging; and the Altarum Institute, which works to improve care for vulnerable older adults.

The initial grant to the group is $3.8 million; total funding for the five-year project is expected to be $19 million, according to Greg Link, director of the ACL’s office of supportive and caregiver services.

This fall, project leaders will invite organizations across the country to submit proposals to serve “non-medical” needs of older adults and younger adults with disabilities. Next spring, up to 30 organizations will get 18-month grants of $30,000 to $250,000, according to Juliet Simone, director of national health at the Oasis Institute.

The goal is to discover innovative, effective programs that offer services to diverse communities (geographic, racial and ethnic) and that can be replicated in multiple locations.

“We want the organizations that apply to be very flexible and creative,” said Anne Montgomery, deputy director of Altarum’s Program to Improve Eldercare. “And we’re aiming to create a volunteer infrastructure that can last and be sustainable.”

All volunteers will undergo background checks and training, and there will be an emphasis on evaluating program results.

“We want to be able to say, ‘Here are the services that people really need, and these are the types of things that work well for specific populations,’” said John Schall, CEO of the Caregiver Action Network. Services could include preparing meals, taking seniors to church or home-based tech support for computer users, among many other possibilities.

Care Corps faces several challenges. A big one: The grant is tiny, compared with the trillions of dollars spent on health care. It could take a long time to build it into a national effort that attracts more investment.

Project leaders are optimistic. To nonprofit organizations working in the aging field, “it’s a lot of money ― they can do quite a lot with these grants,” said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. Programs may find ways to license successful models, and local and national foundations may step in with additional support, Simone said.

Recruiting volunteers could be another challenge. At the Center for Volunteer Caregiving in Cary, N.C., which has been providing “friendly visiting,” transportation and caregiver respite services for 27 years, “it’s the biggest issue we face,” said executive director Elaine Whitford.

Because her organization focuses on building relationships with seniors, it asks volunteers to commit to at least a year. “We get a lot of interest,” Whitford said, “then people realize that this just isn’t going to fit into their schedule.”

Helen Anderson, 86, has sickle cell disease, lupus and chronic pain. She lives alone in a Cary apartment. Without help from the center’s volunteers, three women and a man who’ve taken her shopping, cleaned her apartment and done her laundry since 2008, she said, “I could not live independently.”

Scores of volunteer programs serving seniors and people with disabilities already exist, but most are small and many older adults and their families don’t know about them. How they’ll interact with the Care Corps is not yet clear.

One of the largest is Seniors Corps, run by the Corporation for National and Community Service. Through its Senior Companion program, volunteers age 55 and older visit needy older adults and help them with tasks such as shopping or paying bills. About 10,500 volunteers spend 15 to 20 hours a week, on average, serving 33,000 seniors through this program.

Recent research from Senior Corps demonstrates that volunteers receive benefits while giving to others ― a finding confirmed by a large body of research. After two years of service, 88% of Senior Corps volunteers reported feeling less isolated, while 78% said they felt less depressed.

To learn if Service Corps’ companion program is available near you, use this new tool on its website. The group also offers less intensive services to 300,000 older adults and people with disabilities through its Retired Senior Volunteer Program.

To learn about other volunteer programs in your community, contact a local senior center, a nearby Area Agency on Aging or your county’s department of aging, experts suggest. ACL’s Eldercare Locator can help you identify these organizations.

Another source is the National Volunteer Caregiving Network, which lists about 700 programs, most of them church-based, on its website.

“Volunteer caregiving can make the difference between someone having quality of life and not having any at all,” said Inez Russell, board chair of the organization. She’s also the founder of Friends for Life, a Texas program that offers volunteer aid to seniors trying to live independently and that reaches out to seniors who don’t have family members on birthdays and holidays, among other services. Altogether, the two programs reach about 4,000 people a year.

In Montpelier, Vt., Joan Black, who’s 88 and lives alone in a one-bedroom apartment, has been a member of Onion River Exchange ― a time bank ― for 10 years. Onion River members contribute goods and services (a ride to the airport, a homemade casserole, a newly knit baby sweater) to the time bank and receive goods and services in exchange. For years, Black gave out information about the exchange at farmers markets and other community events ― her way of banking credits.

It’s a form of volunteerism that “creates a sense of community for many people,” said Edisa Muller, chairwoman of the Onion River board.

For Black, who lives on a small fixed income and can’t vacuum, scrub her tub, dust her wooden furniture or shovel the driveway that leads to her apartment, participating in the time bank has become a way to meet new people and remain integrated with the community.

“I like a tidy house: When things are out of order, I’m out or order,” she said. “I don’t believe I’d be able to do everything I do or live the way I do without their help.”

This post first appeared on Kaiser Health News and is republished with permission. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Feature photo by Fabrizio Verrecchia on Unsplash.

Written by Sue Montgomery · Categorized: Agile Caregiving, Graceful Aging · Tagged: Agile caregiving, Graceful Aging

Dec 12 2019

Disability Travel: 16 tips to help make your holiday trip a success

For many, disability travel can be a challenge at any time of the year. This may be especially true during the holidays, when so many are hitting the proverbial road in one way or another to see family and friends.

For those living with some type of disability—as well as their caregivers—embarking on such a trip can present some unique challenges.

Fortunately, there are certain tips you can follow to help make your holiday trip a success.

Disability travel example. Woman standing beside individual in a wheelchair

Types of disabilities

According to 2015 data from the U.S. Centers for Disease Control (CDC), 22 percent of adults in the U.S. live with some type of disability. Common functional disability types include:

  • Mobility—defined as “serious difficult walking or climbing stairs.”
  • Cognition—defined as “serious difficult concentrating, remembering, or making decisions.”
  • Independent living—defined as “difficulty doing errands alone, such as visiting a doctor’s office or shopping.”
  • Vision—defined as “blind or serious difficulty seeing, even when wearing glasses.”
  • Self-care—defined as difficulty dressing or bathing.

Image Source: U.S. Centers for Disease Control (CDC) from https://www.cdc.gov/media/releases/2015/p0730-us-disability.html

Functional disabilities such as these are usually related to one or more health conditions that may include things like:

  • Neurological diseases—including conditions involving the brain and nervous system.
  • Cardiovascular diseases—including congestive heart failure and stroke.
  • Lung diseases—including chronic obstructive pulmonary disease (COPD) and other respiratory conditions.
  • Digestive diseases—including those which require special feeding accommodations or supplies, such as those for an ostomy.
  • Genitourinary diseases—which may require special treatments and supplies, such as catheters.
  • Endocrine diseases—including diabetes, which require special supplies for monitoring and treatment.
  • Musculoskeletal disorders—including arthritis or other problems with the joints and spine that may affect mobility and function.
  • Cancer—of any body system that may create an array of needs.
  • Various types of injuries—that may impact mobility, function, and require special care.

The need for planning

Having one or more conditions such as these means trying to travel can become a complicated matter. Consider just a few of the issues that may arise:

  • Those who are on oxygen may be limited by the type of system they are using, and the necessary supply of tanks that will be needed to see them through a trip.
  • Those who have mobility issues and rely on assistive devices, such as walkers, wheelchairs, and motorized scooters, may have difficulty transporting their equipment or determining whether they’ll be able to access the experiences they’d like to enjoy during the trip ahead.
  • Those who have ostomies, wounds, feeding tubes, peritoneal dialysis, or other conditions for which supplies may be needed must ensure that they’ll have everything they’ll need along the way.
  • Those who are on hemodialysis are limited by the need for regular treatments every week, and must have the ability to access care when away from home.
  • Those who are enrolled in hospice must make special arrangements to access care if the need arises.

However, with the right type of planning and support, you can still enjoy traveling during the holidays.

Yellow Volkswagon van on road through desert hills

16 tips for better disability travel

Although everyone’s needs are different, keeping the following general tips and recommendations in mind will give you a better chance of enjoying your trip—and remaining safe and healthy as you do.

Before you go

1. Talk to your doctor and healthcare team. Make sure everyone knows of your plans to make sure you’re physically able to make the trip, and to get their help in coordinating specific needs.

2. Start planning well in advance to give yourself the time you need to cover all the details. Add some flexibility into your travel plans in case you need extra time to rest.

3. Research your stops along the way and your destination. Understand what type of healthcare will be available and how to access it if you need it. Find out about accessibility and whether the equipment you need will work in terms of doorways, floorplans, storage, and power supply.

4. Research your mode of travel and understand policies that may affect you.

5. Gather essential health information and organize it into a system that’s easy to access, such as a health information notebook. Make sure you have the essentials, such as health history; medication lists; advance directives; and emergency contact information for your healthcare surrogate, physician(s), and other members of your healthcare team.

6. Ensure that you have all of your medications in ample supply and leave them in their original bottles with the labels intact. This applies to both over-the-counter medications and prescriptions.

7. Ensure that you have all medical supplies that you’ll need while away.

8. Pack extras of essentials, in case of unplanned situations.

9. Understand your insurance coverage and how care will be paid for if you require it while traveling.

10. Ensure that your traveling companion(s) have all the information they need to support you during the trip.

While enroute and at your destination

11. Be aware of being out of your routine. This is especially true for medications, treatments, diet, and exercise. It’s easy to get off schedule with medications and treatments when you’re distracted by all the fun you’re having. If you have dietary restrictions, such as salt and fluids, be careful what you eat and drink so you don’t overdo. If you have a regular exercise routine that helps keep you mobile, try to stick to it as much as possible.

12. Be aware of specific issues that may impact your specific condition—such as avoiding car exhaust if you have lung disease.

13. Rest as needed. Remember that you’ll likely be doing much more than your body is accustomed to, so take frequent breaks and make use of that extra time you allotted. Don’t push yourself into getting sick just to maintain your schedule or fulfill the expectations of others. 

When you return home

14. Check in with your doctor and healthcare team to let them know you’re back. If anything changed regarding your health while you were gone, provide them with an update to receive guidance about further care.

15. Check your medications and supplies and order anything that may be running low.

16. Rest, and let someone else do the unpacking for you.

Want a downloadable copy of these tips?

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Written by Sue Montgomery · Categorized: Agile Caregiving, Disability Travel, Graceful Aging · Tagged: disability travel

Dec 04 2019

Hospice care vs palliative care: 2 key differences you should know

With Thanksgiving behind us, we’ve been reminded of the many things for which we’re grateful.

For me, that includes hospice care and palliative care—since both have played such a significant role in my life.

Since November was also National Hospice and Palliative Care Awareness Month (aka National Hospice Month), National Home Care and Hospice Month, and National Family Caregiver Month, it’s a great time to talk about the differences between hospice care and palliative care.

This information is important for individuals in need of care and the family caregivers who are caring for them.

Dear to my heart

I’m both a former hospice professional and a former family caregiver, so raising awareness about the benefits of these offerings is a passion of mine—which is why I continue to write and share about these topics in a variety of ways.

When my mom’s health started a steep decline toward the end of her life, hospice wasn’t yet an option for a variety of reasons. Though I was able to provide most of her care, she still needed to see a doctor on a regular basis.

With her mobility a growing challenge, we faced limited options since she could no longer ride in the car. This is a common scenario for those living in the community with serious illness, where gaps in care options can be a big challenge.

Hospice vs palliative care: younger person holding older person's hands

Just as I was starting to wring my hands, a friend told me about a new community-based palliative care practice that had opened in our community.

I contacted them and the doctor came out within the next few days to admit Mom and care for her needs. This service continued until she was ready for hospice in the last three weeks of her life, at which time a smooth transition between the two services took place.

Hospice care and palliative care lingo

When we talk about hospice and palliative care, the two terms often exist within the same breath. But they’re not the same.

Palliative care is often referred to as “comfort care” and it’s an essential component of the care that patients receive within the auspices of a hospice program.

However, this service can also stand alone—separate from hospice—providing a critical bridge across the gap of care that exists for many with serious illness, like Mom.

Although palliative care programs have existed within hospital settings for some time, community-based programs like the one we accessed are fairly new to the scene. Fortunately, they’re becoming increasingly available for those who need them.

2 ways hospice care and palliative care are different

Here are two ways hospice care and palliative care are different:

  1. Timeframe: Hospice care is appropriate for those with a life expectancy of six months or less, but palliative care is appropriate for anyone with serious illness.
  2. Treatment focus: Hospice care focuses strictly on comfort care, but palliative care allows an individual to continue to pursue curative care while receiving comfort care.

In both:

  • A primary focus is the relief of pain and other symptoms to optimize quality of life.
  • Care is provided through an interdisciplinary approach to address physical, spiritual, and psychosocial needs.
  • Care is provided by practitioners skilled in a holistic approach to care that focuses on identifying patient and family goals to make sure the type of care provided is that which the patient wants.

Hospice care is paid for through the Hospice Medicare/Medicaid Benefit or traditional insurance, but palliative care is typically covered through traditional Medicare/Medicaid or insurance.

The National Hospice and Palliative Care Organization (NHPCO) provides a concise comparison of hospice and palliative care in their handout, “Pallative Care or Hospice? The right service at the right time for seriously ill individuals.”

Is palliative care right for you or your loved one?

If serious illness is involved, the answer is often a resounding “yes.” This is especially true if pain and symptom management is an issue—since palliative care professionals are experts in this area.

They’re also experts in helping patients and families look at the “big picture” and plan accordingly, instead of getting caught in the siloes of care that often occur when numerous specialties are involved. When this happens, patients are too-often placed on a treatment treadmill that doesn’t align with their goals.

Through its consumer site: GetPalliativeCare.org, the Center to Advance Palliative Care (CAPC) offers a five-question assessment to help you determine if palliative care is right for your situation. You can access the assessment here:

Is Palliative Care Right for You?

Finding a palliative care program in your area

Many hospitals—especially in urban areas—have a palliative care team. So if a hospitalization is involved and you would like to be connected with these experts, ask for a consult.

CAPC recently published a summary of America’s Care of Serious Illness: 2019 State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals, which you can access in its post, “Did Your State Make the Grade?“

However, finding a community-based palliative care provider may prove a little more difficult, since this model of care is still fairly new. I’ve had several friends who I tried to help access services in their areas, only to find they were not yet available.

Although Mom received her care from an independent program, community-based palliative care is often provided through a hospice program, so contacting the hospice(s) in your area to see whether this option is available can be a great place to start. In addition, CAPC offers a searchable directory of palliative care providers.

It’s often best to talk to your healthcare provider first to discuss your condition, concerns, and available options—which may include palliative care. Your healthcare provider can then help you find a palliative care program in your area if one is available, and make the referral you’ll likely need.

For more information, here are a few additional articles I’ve written on this topic, as well as links to organizations that can help:

  • Community-Based Palliative Care: California Leading the Way
  • Living with a disability: Why the right support can make all the difference
  • A cat. A movie. And peppermint patties. Sometimes there are alternatives to hospitalization.
  • Mobile Palliative Medicine: In Our Home and on the Frontier

Organizations that can help:

  • CAPC’s Get Palliative Care (For consumers)
  • National Hospice and Palliative Care Organization’s (NHPCO) CaringInfo (For consumers)
  • California State University’s Shiley Institute for Palliative Care (The CSU Shiley Institute for Palliative Care provides training and other resources for clinicians. I’m an author/co-author for a number of courses there.)

Written by Sue Montgomery · Categorized: Agile Caregiving, Graceful Aging, Peaceful Dying · Tagged: Agile caregiving, Graceful Aging, Peaceful Dying

Dec 18 2017

Family caregiving and its mixed bag of emotions

If you’re a family caregiver, you might feel like your emotions are all over the place.

Some days you and your loved one are the best of friends—but other days not so much.

You might feel like the much-appreciated hero in the morning—but by lunch, you apparently can’t do anything right.

The good news is that you’re not imagining things, and that you’re certainly not alone. Many caregivers experience a roller coaster of emotions when caring for their loved ones—and those who are receiving care often do, as well.

The AARP Family Caregiving Survey

In November, the American Association of Retired Persons (AARP) published the results of its most recent Family Caregiving Survey, which surveyed both caregivers and care recipients “to examine the emotions they experience as well as how their relationship with their loved one may have changed as a result of caregiving.”

Among the caregivers surveyed:

  • 40%—were not prepared to take on the role of family caregiver
  • 91%—were pleased to be able to help
  • 51%—felt stressed
  • 51%—felt worried
  • 40%—felt overwhelmed
  • 54%—experienced an “unexpected joy in caregiving”
  • 24%—had regrets

Among the care recipients surveyed:

  • 91%—felt pleased to be cared for
  • 89%—had a sense of gratitude
  • 59%—felt less independent
  • 51%—experienced an “unexpected joy” or positive feelings about being cared for
  • 26%—had regrets

As a former family caregiver, I’m quite familiar with all of those emotions.

Plus, I’m a nerd and I love data like this.

It both affirms our experiences and can help us to address the dynamics we’d like to change. So let’s look at where that might be possible.

Steps toward positive change

I love the phrase “unexpected joy”—and both caregivers and care recipients referred to it in the context of the benefits that caregiving provided for their relationship. Specifically, they said they enjoyed getting to know each other better and spending more time together.

I also found it interesting that among the regrets that caregivers expressed, included were “wishing they’d spent more time with their loved one,” and that they’d been more compassionate and emotionally prepared.

While caring for a loved one can be overwhelming at times, there are so many blessings that come along for the ride. Just like everyone else, the journey for Mom and me had its ups and downs—but together, we figured out how to tackle the hard stuff as a team, while recognizing and embracing our time together as the treasure that it was.

If you’re a family caregiver, maybe a few things that helped us can help you and your loved one, too:

  • Put yourself in your loved one’s shoes—it’s not easy to be dependent on someone else and change is really hard.
  • Empower your loved one’s autonomy—being a partner in their care instead of an overbearing control freak.
  • Remember the power of words—and walk away if you’re about to say something you’ll regret.
  • Be present when you’re together—instead of worrying about everything else you have to do.
  • Play and have fun together—instead of just focusing on caregiving tasks.
  • Savor the time you have with each other—knowing that someday you’ll need those memories to carry you through.
  • Pray for yourself and each other—spending consistent quiet time with God to refresh and renew.
  • Remember that your loved one’s journey may be your own someday—since we’re all on life’s continuum together.

Resource books you might find helpful:

  • A Spirituality of Caregiving by Henri Nouwen (affiliate link)
  •  American Cancer Society Complete Guide to Family Caregiving: The Essential Guide to Cancer Caregiving at Home by Julia A. Bucher Rn PhD,‎ Peter S. Houts PhD,‎ and Terri Ades DNP FNP-BC AOCN (affiliate link)
  • How to Care for Aging Parents, 3rd Edition: A One-Stop Resource for All Your Medical, Financial, Housing, and Emotional Issues by Virginia Morris (affiliate link)
  • The 36-Hour Day, sixth edition: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (A Johns Hopkins Press Health Book) by Nancy L. Mace MA and Peter V. Rabins MD MPH (affiliate link)
  • The Caregiving Season: Finding Grace to Honor Your Aging Parents by Jane Daly (affiliate link)
  • When Family Calls: Finding Hope in the Chaos of Long-Distance Caregiving by Caroline H Sheppard (affiliate link)

For more resources about Agile Caregiving and other topics, please visit our page, Resources for the Journey.

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Written by sue montgomery · Categorized: Agile Caregiving

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