Life

Caregivers: Overcoming the Grief Caused by Parkinson’s

July 1, 2019 Caregivers, Life

One thing that many people might not associate with experiencing Parkinson’s disease is grief. Experiencing grief with this disease is real. It can be felt deep down in your soul, whether you are the one who actually has the disease or you are the caregiver. You mourn for a life that used to be, and fear it may never be again.

Although our life changes in unexpected ways and fear threatens to consume our days and terrorize our nights, we can learn to overcome those wretched feelings. Innumerable people miss out on the rich experiences and blessings they have been given today because they can’t stop worrying about their future with Parkinson’s.

In “Living Beyond Your Feelings: Controlling Emotions So They Don’t Control You,” author Joyce Meyer writes, “The three most harmful negative emotions are anger, guilt, and fear.” When we have Parkinson’s disease, we are particularly susceptible to anger and fear.

We experience anger, as evidenced when we ask ourselves the age-old question, “Why me?”

We pump our fists in the air and ask, “What did I ever do to deserve this?!” Our dreams of a better tomorrow feel as if they have been sucked dry and replaced with feelings that frighten us and worries we can’t seem to get under control.

We think about what used to be: The days when we were able to work at a job we loved; the times when we could get down and play with our grandchildren; the summer vacations we took that used to reenergize us instead of wearing us out. Grief steps in and leaves us feeling fearful and despairing.

Two weeks ago, I lost someone dear to me. She was like a second mother to me. I babysat her daughter as a newborn. She was my maid of honor at my wedding. And when I think of her, a great sadness overcomes me: grief. It not only came upon me at the news of her passing, but also returns each time I think of her.

Getting a diagnosis of Parkinson’s disease can be like losing a loved one.

There is the initial grief, but waves of grief can still overcome us, sometimes when we least expect them. Often, those waves of grief are accompanied by fear. Not only are we dealing with what we’ve lost, but also we are fearful of what we may still lose.

Getting through grief over the loss of a loved one takes time, and the amount of time varies with each individual. It’s the same with the grief of having Parkinson’s.

Grief is normal.

Grief is a part of life. While we must learn to accept it, it is still OK to cry. It is OK to mourn what we have lost. In that mourning, however, we need to remember that life goes on. While we may not know what tomorrow will bring, we know we have this moment right here, right now, and Parkinson’s can’t take that away.

Article from Parkinson’s News Today.

Virtual reality reduced PD symptoms for 10 people

June 1, 2019 Life, Research

A new virtual reality game has helped Parkinson’s sufferers keep walking without losing their balance, falling or struggling to turn.

Over time, the incurable neurodegenerative disease restricts muscles more and more, limiting a person’s mobility, ability to turn and balance. But a new technique developed by researchers at the University of Utah restored dynamic movement in 10 patients who trained on the system three times a week for six weeks.

Experts believe the repetitive activity – walking, running and turning on a treadmill as they hop over virtual objects on a cave-like screen in front of them – helped to keep their muscle memory active and ward off deterioration.

‘The primary advantage is that they can encounter multiple obstacles and terrains while a safe environment is maintained using equipment such as a fall restraint tether,’ said K. Bo Foreman, PhD, associate professor and director of the Motion Capture Core Facility at the University of Utah.

‘Participants enjoyed the experience and thought it was fun, not just exercise. They liked training and challenging themselves without the fear of falling.’

The virtual reality experience is projected onto semi-circle-shaped wall facing the patient, who is on a very wide treadmill. The patient wears a headset, shoes and clothing with sensors on them, and they are tethered to a pole behind them for control.

Some of the tasks seem more straight forward than others – walking straight through a field, for example, rather than jumping up onto the curb of a road. But the fusion of everything together forces patients to exercise various skills which can quickly become challenging, if not impossible, for people with Parkinson’s.

Once we’ve learned to walk, we become adept at nimbly switching from walking to running, from walking straight forward, to walking diagonally to the right. We can speed up or slow down, and step to the left or right, or up or down.

Researchers are still working to fully understand how Parkinson’s restricts movement and gait. There is evidence that the drop in dopamine levels plays a role. However, there is growing evidence that physical activity can stave off the decline. For example, revered actor Alan Alda, who revealed his Parkinson’s diagnosis last summer, has taken up boxing to stay mobile.

Dr Foreman’s team at Utah believe VR, much-hyped for its potential use in clinics, is worth the fan-fare. ‘We are hopeful that this improved performance relates to decreased falls in their everyday life,’ Dr Foreman said. ‘Parkinson’s disease is a progressive disease, and anything we can do to impact the progression is a step in the right direction.’

Article from Daily Mail.

Caregivers: Considering an adult day program? Trust your instincts.

June 1, 2019 Caregivers, Community Outreach, Life

Baby Boomers, more than 77 million strong, are also known as the Sandwich Generation. They are the ones raising their own kids and having to care for their aging parents at the same time. In one way, an enviable position to be in for those whose parents are in good health and maintain an active lifestyle. But for other Boomers whose parents have chronic health issues, are isolated or depressed, the responsibility can be daunting and overwhelming to you, the caregiver.

One solution that could bring you some relief is a community-based program known as adult day health care. There are more than 4,000 centers across the country with more than 78 percent operating on a non-profit basis. All medical model adult day health care programs are affiliated and licensed under nursing homes. If you are considering an adult day health care program, here are some tips to help you get started in choosing the one best suited for your loved one.

Selecting the Appropriate Adult Day Health Care Model

First, decide which type of adult day health care program you need. The two types are: medical and social.

Medical Model Adult Day Health Care Program: The medical model program offers adults who are chronically ill or in need of health monitoring access to nursing care, rehabilitation therapy, social work services, and assistance with personal care. Medical model programs have a registered nurse and rehabilitation therapists on site.
Social Model Adult Day Health Care Program: This is the most common type of adult day center. The main function of the social model is to provide seniors with supervised care in a safe environment, as well as a place to socialize and stay physically and mentally active.

Round-Trip Transportation is Key

Most adult day health care programs provide door-to-door, round-trip transportation. The vans should be equipped with an electronic lift and other equipment to accommodate people in wheelchairs, walkers or canes.

Trust Your Instincts

As Barbara Walters, the television celebrity and news personality says, “Trust your gut.” Ask yourself some questions when visiting the adult day care health care programs. What’s the first impression you have after walking through the door? Are the staff and patients happily engaged in activities together? Are the recreation and dining areas clean? Are the walls brightly decorated with patients’ artwork? Are there people who speak my language or come from a similar background? Are the activities offered age appropriate for me? Trust your gut!

Emergency and Safety Plans

Every adult day health care program must have a medical and safety emergency plan. Ask the program’s director or the person who takes you on a tour to show you the written plan. Feel free to ask questions. For example, you could ask: What’s the procedure if someone goes into diabetic shock; or if someone falls? In an emergency, how are clients evacuated from the center? When touring the facility, notice if there are smoke detectors mounted on the walls. Do you see fire extinguishers? Ask if they have a defibrillator on the premise. Safety first!

Activities for All

Adult day health care programs should have a posted weekly or monthly calendar of activities and events. If it’s not already posted, ask for it when you’re on your tour. Offerings should range from group activities such as exercise programs and drumming circles or to activities such as arts and crafts, dominoes, or crocheting. Ask whether they provide trips to museums, shopping malls, baseball games or the local theater. Do they bring in outside guests to entertain, educate or inform individuals? It will quickly become apparent if the program is going the extra step to keep individuals motivated and actively engaged.

You Are What You Eat

Adult day health care programs generally provide at least one healthy meal and a snack during the day. Specialty diets, such as low sodium, low sugar and low cholesterol are accommodated at most programs. Ask the center for a copy of their weekly or monthly menu and, if possible during your tour, taste the food.

Personal Grooming Is So Important

Your loved one may need some assistance with personal grooming. Does the program have adequate staff to handle those needs, such as toileting, showering and other personal care? And, for those folks who are incontinent, does the staff handle toileting with sensitivity allowing the individual to maintain their dignity.

The Choice is Yours

After evaluating and experiencing a few adult day health care programs, seeing the range of activities and enthusiasm of the staff, taking a look at the menus and simply “getting the feel” of the programs, you’ll be in a better position to select the program that you feel is the most appropriate for your loved one. It’s also a good idea to speak with participants about how they feel about the program while you are on your tour.

But in the end, the choice is yours. And remember, “Trust your gut.”

Article from Caregiver.com.

“Sometimes, art can communicate what words cannot”

June 1, 2019 Community Outreach, Exercise, Life

Framing OFF Through Art is a monthly art series inspired by the stories of people with Parkinson’s and their carers.

Each piece of art is made by artists with a personal connection to Parkinson’s, who partner up with people living with the condition to create art that symbolises one of their symptoms. The pieces focus on Parkinson’s ‘off’ episodes, which are the periods between treatment when symptoms re-emerge.

Artist Julie Beezy, known as Julie B. – who created the first piece last month – said: “I was honoured to be asked to be a part of this initiative. I am an artist and create pieces that can reflect many different meanings, so it was very special to create a piece that will, hopefully, help someone communicate something so complicated and emotional.”

“My mother has Parkinson’s. She was diagnosed about 10 years ago but keeps a lot of her feelings and symptoms about her diagnosis private. Working on this initiative really opened my eyes to what she experiences and how important communication is – with not only your healthcare team but your family and support system.”

For the initiative, Julie partnered with Steve Peters, who was diagnosed with Parkinson’s in 2012, and his wife and care partner, Leslie. They created ‘Reflections’ – a sculpture inspired by Steve’s journey with his condition.

Explaining the meaning behind her art, Julie said: “The four silhouettes represent Steve, his wife Leslie, and their two children. The tulip-covered silhouette at the center is a nod to Parkinson’s advocacy and the broader community, which are very important to the Peters family.”

Julie believes art can help people deal with their condition, especially at a time when it is difficult to verbally communicate.

“Sometimes, art can communicate what words cannot. Some aspects of Parkinson’s cannot be seen, so the emotional side of art can better communicate these symptoms. The release this artwork provides, not only creating it but also seeing it, can be beneficial.”

Taking part in the initiative has also provided Julie with a newfound understanding of her mother’s Parkinson’s experience.

“My mother kept things very private,” she said, “and after my experience with Framing OFF Through Art, I realised how lonely it can be. It is important to talk about how you are feeling with your family and care team.

“I hope creating this piece for Steve will help someone else with Parkinson’s live better and understand the importance of communication.”

To find out more about the Framing OFF Through Art initiative, created by US biotech company Acorda Therapeutics, click here.

The sculpture, titled ‘Reflections’, was inspired by Steve’s Parkinson’s journey.

Article from Parkinson’s Life.

Digital Management of Parkinson Disease: Is Technology the Future?

May 1, 2019 Education, Life, Research

With the ever-increasing integration of technology into nearly every aspect of modern life, its applications in medicine continue to expand, including in the area of Parkinson disease (PD).

A recent randomized controlled trial of 195 patients with PD, for example, found that physician care delivered via telemedicine into patients’ homes was as effective as in-person care.1 Additional emerging research supports the benefits of other digital tools in this patient population.

In a review published online in the Journal of Parkinson’s Disease, Clint Hansen, PhD, of the Department of Neurology at Christian-Albrechts-Universität Kiel and the University Hospital Schleswig-Holstein, Campus Kiel in Kiel, Germany, and colleagues explored current and future directions regarding the use of technologies such as the electronic health record (EHR) and wearable sensors in PD management.2

Although many institutions and private practices have replaced paper-based medical records with EHRs, there are often limitations on how these are used in clinical decision making. This is likely to change significantly within the next decade, as most “countries with established health structures will then have nationwide provision of innovative EHRs with cloud storage solutions, and most of these EHRs will be patient-controlled,” Dr Hansen and colleagues noted.

In addition, they wrote, EHRs will “communicate with clinical data warehouses that consolidate hospital- and practice-derived data, with population health analytics databases that will provide information about disease risk and prevention, and with digital technology that is used by… the patient.”2 They also expect that moving forward, data protection laws will become more stringent, thus reducing the risk for privacy violations and increasing patient acceptance of EHRs.

With the growing use of digital devices to provide personalized feedback on measures of health, including those worn on the wrist or contained in shoes, it is conceivable that similar tools could be designed to facilitate the continuous monitoring of disease manifestations in patients with PD. These systems “will most probably be easily and widely used and not [require] an active interaction with the user, will be approved by regulatory authorities and the costs will be covered by health insurances,” noted Dr Hansen and colleauges.2

As a template for such devices intended for application in PD, the authors pointed to continuous subcutaneous glucose monitors that are used in patients with diabetes. Other possibilities include integrated detection systems in hearing aids, glasses, and earphones to allow patient interaction with the environment; analysis of mobility data such as reaction times and multitasking ability; insertable cardiac monitors; use of a smartphone as an accelerometer platform to gauge the treatment efficacy of deep brain stimulation; and remote assessment of autonomic features and gut motility. Many of these systems should be easily individualized to each patient.

In another review published in the same journal issue, the authors propose the use of a sensor-based system to analyze gait and detect falls in patients with PD, which would include decision support based on big data sources.3 One benefit of this type of approach is the “standardization of real-life medical data derived from individual patients into longitudinal multimodal disease trajectories…[which] will allow matching and clustering of different patient trajectories for individualized prediction about the expected treatment efﬁcacy of particular interventions,” wrote Jochen Klucken, MD, of the Department of Molecular Neurology at Friedrich-Alexander University, and colleagues, in the Journal of Parkinson’s Disease. “Ultimately, the growing amount of medical data derived from individualized real-life treatment contexts will enable academic and industrial research to further improve objective outcomes and better tailor individual care.”

To glean further insights pertaining to the use of digital health technology in the realm of PD, Neurology Advisor spoke briefly with Alberto J. Espay, MD, MSc, professor of neurology and director and endowed chair of the James J. and Joan A. Gardner Center for Parkinson’s Disease and Movement Disorders at the University of Cincinnati Academic Health Center. Dr Espay is also chair of the Movement Disorders Society Task Force on Technology, which promotes the development of digital health systems that will achieve the goals mentioned above.4

Neurology Advisor: What is a key example of how digital health technologies could be used to improve PD care?

Dr Espay: Digital health technologies have the capacity of capturing intraday fluctuations with the kind of granularity that no scales, diaries, or questionnaires can.

Neurology Advisor: How can clinicians support these developments?

Dr Espay: Clinicians can stimulate their patients’ participation in a variety of technology-integration projects through many organizations. This is a great time to participate and contribute.

There will be a variety of ongoing studies aimed at developing a new version of the diary in electronic format for the digital age, integrated with mobile health technologies (“e-diary/tracker”). This is being coordinated through the Task Force on Technology of the International Parkinson’s and Movement Disorders Society. Efforts such as these are ongoing or will soon occur in many countries in the world.

Neurology Advisor: What should be next steps in terms of research or development in this area?

Dr Espay: The future development of a unifying platform for integrating and synchronizing the data from multiple technologies, one of the goals of the Movement Disorders Society Technology Task Force, could provide the most comprehensive picture of patients’ function than anything we currently have.

Neurology Advisor: Would you like to note any additional takeaways on the topic?

Dr Espay: Technology offers us the means to improving the ends of health care delivery. In the future it will weave seamlessly into patients’ lives to enhance the capture of data, help anticipate periods in which changes are needed, and empower patients to apply strategies to enhance their quality of life.

References

1. Beck CA, Beran DB, Biglan KM, et al. National randomized controlled trial of virtual house calls for Parkinson disease. Neurology. 2017;89(11):1152-1161.

2. Hansen C, Sanchez-Ferro A, Maetzler W. How mobile health technology and electronic health records will change care of patients with Parkinson’s disease. J Parkinsons Dis. 2018;8(Suppl 1):S41-S45.

3. Klucken J, Krüger R, Schmidt P, Bloem BR. Management of Parkinson’s disease 20 years from now: towards digital health pathways. J Parkinsons Dis. 2018;8(Suppl 1):S85-S94.

4. Espay AJ, Bonato P, Nahab FB, et al. Technology in Parkinson’s disease: challenges and opportunities.Mov Disord. 2016;31(9):1272-1282.

Article from NeurologyAdvisor.

For Caregivers: What is a Parkinson’s Care Partner?

May 1, 2019 Caregivers, Life

Parkinson’s impacts the whole family, especially those most involved in the day-to-day care. As a Parkinson’s care partner, it can be easy to lose sight of your own health and well-being as you care for your loved one living with Parkinson’s. However, taking the time to prioritize your own physical and emotional health will benefit both you and your loved one with Parkinson’s.

In this post, we help you identify important questions to ask regarding your role as a care partner and provide strategies to care for yourself as you care for your loved one.

What is a Care Partner?

A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.

As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.

Here are some important discussion topics to have with your loved one:

Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It’s important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
Speak up during medical appointments. You are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.

Why is Care Partner Health Important?

Even though you love the person you’re caring for, caring for someone with Parkinson’s brings real physical, emotional and financial challenges.

Care partners can experience more fatigue, depression and sadness than those without the same responsibilities. The increased stress and strain can make regular self-care harder, which can, in turn, cause your physical and emotional health to suffer. Strain can lead to burnout, which occurs when the care partner is at the point of exhaustion.

Overall, care partners are more likely to experience:

Symptoms of depression or anxiety
Chronic medical problems, such as heart disease, obesity, cancer, diabetes or arthritis
Higher levels of strain hormones and/or a weaker immune response
A higher risk for memory problems

As a care partner, you can be proactive about your own wellness, just like you are encouraging your loved one with Parkinson’s to be. Begin by learning more about the stress and strain that can come with being a care partner and take steps to limit or avoid factors that lead to burnout. Continually encourage your partner to take an active role in their own care, as research has shown that when people with Parkinson’s have a greater sense of control over their own life with Parkinson’s, the strain on care partners can lessen and everyone’s well-being improves. Develop your own community of trusted friends, relatives and other care partners who can provide practical as well as emotional support.

You can also consider seeing a social worker or counselor. Social workers and counselors have the expertise and knowledge about community resources to help you address the stress and strain that can come with being a care partner.

How Can I Live Well as a Care Partner?

Your journey of living well as a care partner involves many of the same themes as your loved one who is living with Parkinson’s: taking action, staying connected and being involved. Just as Parkinson’s affects everyone differently, your role as a care partner will affect you in unique ways. It’s important to stay in touch not only with your loved one as you both learn to live well, but with yourself as things change and evolve over time.

Begin by learning more about the stress and strain that can come with being a care partner and take steps to limit or avoid factors that lead to burnout. The American Medical Association provides a caregiver health self-assessment questionnaire with helpful recommendations for starting conversations with healthcare professionals about the impact caring for your loved one may have on your personal health.

Educate yourself about the spectrum of Parkinson’s symptoms and learn which are the most challenging for you and your loved one. Read websites, books and articles as well as watch educational videos, attend support groups and educational events and have conversations with healthcare professionals like your neurologist, nurse or social worker.

Recognizing the importance of maintaining the identity, health and well-being of your loved one with Parkinson’s as well as yourself will bring a better quality of life for you both.

Article from Davis Phinney.

WPA on The Morning Blend!

April 5, 2019 Awareness, Community Outreach, Education, Life

Jeremy Otte, director of outreach & education, and Dale Luedtke, a musician with Parkinson disease, were featured on The Morning Blend, a morning talk show on TMJ4 Milwaukee. Check it out!

Educating the Educated About Parkinson’s Disease

April 1, 2019 Community Outreach, Education, Life

This column appeared in Parkinson’s News Today.

I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s.”

So, I had an appointment with the dermatologist. After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer.

She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.

While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning.

I guess what surprised me is how uninformed so many still are.

I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.

As patients, our job is far from finished.

As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”

If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.

WPA on the Radio!

April 1, 2019 Education, Life

WPA Executive Director Gary Garland was interviewed by Milwaukee Radio Group host Andrea Williams last week. Listen here!

For Caregivers: When and How To Say “No” to Caregiving

April 1, 2019 Caregivers, Life

When is it time to say “No”?

How does a caregiver know when he or she can no longer manage the daily caregiving routines and planning responsibilities? What signals alert the caregiver that he or she is in trouble of getting lost in caregiving? Can a caregiver who cherishes a loved one set limits on responsibilities without feeling guilty or morally bankrupt? These are questions at the heart of successful, long-term caregiving. Unfortunately, for most caregivers, these questions do not arise until they are feeling overwhelmed and depleted.

Being able to say, “No, I can no longer continue to provide care in this way,” may not only save the caregiver from emotional and physical burnout, but can also open up opportunities of shared caregiving responsibilities with others while deepening the level of honesty and openness in the relationship.

Saying “No” may seem like a harsh statement to a caregiver who prides herself on being a helpful, kind and loving person. In fact, most caregivers choose to become one because they feel a moral imperative to do so. This imperative may come from a number of sources including family relationships and roles, friendship ties and social expectations.

Families often select the primary caregiver from cultural norms such as the youngest unmarried daughter or the oldest son as being responsible for a parent’s care. Friendship ties provide many single elders with caregivers who act in lieu of local family members. In the United States, the social norm is for family and friends to provide care to elders first before the government.

Current statistics show that the majority of elder care is provided by families and other members of an elder’s informal social network. Proximity is also a component in caregiving. The closer one is geographically to a loved one, the more likely he or she will become the caregiver. Personal values derived from one’s faith or spiritual practices may lead a person to feel called to provide care. Moral decision making based on humanistic values such as, “Everyone has the right to stay at home if they choose no matter what,” may encourage a person to become a caregiver.

Wherever the imperative is coming from, the role of the caregiver is intimately linked to that person’s code of ethics and the way in which the person chooses to act in his or her own life.

What does saying “No” mean anyway?

Is it a final giving up of duties that implies the caregiver is ending the relationship and leaving a loved one to fend for himself? Maybe the “No” means, “I’m tired and feel trapped.” Maybe the “No” means, “I have failed to be all I could be as a caregiver.” Maybe the “No” means, “I can’t do what you want me to do and I feel inadequate.” Or maybe the “No” just means, “ I am so tired, I have to stop.” The word “No” can have different meanings for different people. “No” doesn’t necessarily have to have a negative connotation attached to its meaning. “No” can be understood as a pause, a time for reflection, a breathing period or, “Let’s stop and talk this over. Things need to change.” Exploring the meaning of “No” for the caregiver is often the first step in establishing better emotional boundaries.

Healthy emotional boundaries are important in helping the caregiver distinguish between his or her own needs and the needs of the person being cared for. Boundaries remind the caregiver and elder that their relationship is between two adults and that there need to be expectations of mutual respect and autonomy for the relationship to be successful.

The ideal time to discuss caregiving boundaries is in the beginning when both people are new to the process of developing this special relationship.Talking about needs in a calm and supportive way allows each member to feel the other’s concern while acknowledging that the relationship will have some limitations.

In an idealized world of caregiving, the care recipient could turn all problems over to the caregiver without any worries or stress and the caregiver would have limitless capacity for love and work. But neither of these situations is realistic. Getting off to a good start by talking about boundaries as part of a healthy relationship lays the groundwork for developing emotional resilience and flexibility to respond to an increase in the elder’s care needs, while managing the inevitable caregiver stress.

In practice, most caregivers address the issue of their own limits after the caregiving relationship gains full steam. Caregivers often get inducted into helping through a sudden major health crisis of a loved one (such as a heart attack) or by the slow but steady process of taking on tasks and responsibilities for the elder as she experiences aging and the loss of function. In either situation, the caregiver and care recipient aren’t necessarily thinking about being in a relationship but about getting the jobs done that need to get done.

In the first instance, addressing the immediate and critical health care needs of the elder takes precedence over long-term care planning. However, as soon as the elder is stable, the time is right for the caregiver to discuss boundaries and limits.

In the second instance, caregivers need to raise the issue of boundaries as soon as they begin to detect the first signs of their own stress or burnout. Signs such as avoiding the loved one, anger, fatigue, depression, impaired sleep, poor health, irritability or that terrible sense that there is “no light at the end of the tunnel” are warnings that the caregiver needs time off and support with caregiving responsibilities.

Setting emotional limits involves a process of change with five key steps.

First, the caregiver must admit that the situation needs to change in order to sustain a meaningful relationship. Without change, the caregiver risks poor health, depression or premature death. The primary caregiver is such an important person to the elder that impaired caregiver health puts the elder at further health risk.

Second, the caregiver must reconsider personal beliefs regarding what it means to be a good caregiver. Since the caregiver generally has moral expectations of his or her own behavior, redefining what “should” be done to what is reasonable and possible to do can be a liberating moment. This may include lowering some expectations of one’s ability to do things and delegating tasks to others.

Third, the caregiver needs to identify key people (friends, family or professionals) who can support and guide the caregiver through this change process. Frequently, caregivers join support groups with other caregivers to reinforce their commitment to change or hire a geriatric care manager coach. A support group is also a place to express anger, anxiety, frustration and sadness about the caregiving experience instead of inadvertently having these feelings pop out during a tense conversation with a loved one.

Fourth, the caregiver needs to develop communication tools to express the need for boundaries. Honesty and simplicity in talking about feelings and needs does not come easily; particularly if one is not familiar with having these types of direct discussions.

Lastly, the caregiver must be able to sustain this new approach while allowing the elder time, to react and express his or her feelings about the changes. Readjusting the balance in any relationship takes time, especially when both members have competing needs.

There is a simple but effective communication approach that can help caregivers express feelings and set boundaries.

This approach encourages the caregiver to speak from an “I” point of view, in a non-accusatory fashion, expressing the caregiver’s limitations or feelings and offering an alternate solution. Some examples of “I” statements are:

“I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”
“Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”
“Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”

In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level.It is understood the elder knows the caregiver is working hard.

Setting the boundary is the caregiver’s responsibility. There is, however, an invitation for discussion and joint problem solving. At first, expressing boundaries in “I” statements may feel awkward, but with practice, caregivers can learn to raise difficult topics by establishing a comfortable atmosphere for discussion.

Initially, the caregiver may experience resistance on the part of his or her loved one to dialogue about changes as to the provision of care. Gentle persistence is needed to attend to the need for new boundaries. Discussions that can be introduced at a time when both individuals have lower stress and are feeling quiet and comfortable with each other are discussions that have a greater chance of success.

Avoid making decisions about change during emergencies. Waiting until the situation is calm, and both parties can take time to think through issues, creates an atmosphere of joint decision making and ownership of the outcome. Making changes in small steps toward a larger change gives everyone a chance to adapt comfortably.

Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process.

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For Caregivers: When and How To Say “No” to Caregiving

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For Caregivers: When and How To Say “No” to Caregiving