Monday, November 16, 2015

Is Happiness Possible for Caregivers?

Ask any caregiver about her flagging level of happiness, and she’ll probably say: "What happiness?" Take Pamela, for example. With a dying mother who needs care around the clock, a strained budget, two teenage children, and a demanding job—she’d likely tell you: "Happiness is just a mirage."

But should Pamela merely accept her lot in life? Or could she pursue happiness by shifting her perspective, drawing on wisdom of the heart? From this viewpoint, she can now embrace her intuition, inventiveness and resourcefulness to achieve the nearly impossible: Smooth conflict, ease tension, as well as cultivate generosity and love to overcome the daily grind and the adversities she faces.

Positive care strategies will begin to emerge when we allow the heart to be the driver. Some simple changes come to mind: seeking help outside the family, putting aside time for herself, recognizing that her well-being is the essential element in being a successful, enduring caregiver.

With an attitude of gratitude, the caregiver soon realizes that her energy is limited, and that "she can’t give away what she hasn’t got." She also understands from personal experience that "you have to fill up own cup first before you can fill another’s."

Here are a few affirmations to help restore and renew caregivers like Pamela.

Eight Strategies for Happier Living

1. Listen to your inner voice to assess what you’re willing and able to do, and to discard what feels like an overload. Work on being a problem-solver, not a problem-maker.

2. Keep a journal to document all your caregiving accomplishments on a daily basis, so that you can give with a full heart. Sharing photos, rubbing your loved one’s back and exchanging hugs can all flow from a loving heart. Scrubbing the kitchen floor to perfection, washing every last dish in the sink before you allow yourself to go to bed or insisting on creating elaborate meals are activities that you might consider letting go of for now. Find substitute interests that allow both you and your loved one to benefit.

3. Use heart-speak when you interact with your loved one. Terms of endearment, tender words and loving tones can ease that weight of duty, and lifts both of your spirits.

4. Bring your intention of giving care lovingly into every care act, whether it’s making a doctor’s appointment for your mother or driving your husband to his yoga class. Positive intention contributes to a relaxed physical state and peaceful mind.

5. Evaluate the pros and cons of your current job. Does this job work for me right now? If not, what could be done to make necessary changes to reduce my job-related physical and emotional pressures.

6. Look for inspiration wherever you can find it. Whether being with a circle of dear friends, taking a walk in the park, reading your favorite magazine, attending a religious service—any activity that energizes and empowers you—could be just the ticket to brightening your day.

7. Practice mindfulness, which means simply being aware of your bodily sensations, your thoughts, emotions, environment, relationships and overall life. Think of yourself as a witness to your own life, or see yourself as the lead actor in a fascinating movie: your life. Having some distance from your immediate situation can alter the picture immensely. Some experts advocate meditation to heighten this sense of awareness. Mindfulness can be the giant step in helping you achieve deep relaxation and stress reduction.

8. Cultivate compassion and kindness, not only for your loved one, but also for all living things. It’s amazing how differently you look at the world when you view people and human activity from a benevolent and sympathetic point of view. You can start with feeling compassionate, kind and loving with yourself. Praise yourself frequently over the course of the day, especially as you encounter and surmount challenges in caregiving.

Remember: Happiness is only a short attitude shift away.

Thursday, October 29, 2015

Aging in Place (Part 2): The Village & Beyond

The Village

Two additional models have emerged as workable for those open to aging in community: the Village and Care Circles. The Village is designed for people who want to develop the kinds of supports for their old age that families used to provide (some still do), but which are increasingly rare for a variety of reasons.

Villages are sustained by members or their caregivers, who contribute financially, with costs depending on how extensive the level of services and number of members. For example, overall costs for members of a "typical" Village run about $80,000 for start-up expenditures and $20,000 to $200,000 to maintain it each year.

A group of Boston seniors in the Beacon Hill District initiated the first Village in 2001 to help one another live as long as possible in their neighborhood. Now the Beacon Hill Village is an independent, non-profit organization, governed by the members themselves and supported by members’ dues and external donations and grants. A host of "partners," including preferred providers, member volunteers and community services help its members to age in place and connect with their broader community.

Over a 13-year period, 140 established Villages have emerged with more than 200 on the way, with budgets ranging from $1,000 to $674,000, depending on the size of the membership.

Villages promise a higher quality of life by coordinating paid and volunteer elder services with a single phone call. The more developed Village provides a dense network of volunteer, agency and professional intervention that can sustain an older person and their caregivers over time. Services range from education on aging/caregiving issues and elder law to geriatric care and money management.

Preferred providers are vetted by the Village, who oversee the quality of services, and paid professionals are encouraged to offer discounts to members. Volunteers play a significant role in this project, as younger and healthy people "pay it forward" to bring various services to disabled seniors, helping them with chores, meals, home maintenance and other services. In turn, volunteers receive benefits or assistance in the future, especially gratifying for older volunteers. All Villages depend heavily upon trained volunteers, which can substantially reduce costs for members.

Care Circles

Another highly successful model for aging in place, the Care Circle, offers a more nurturing approach, operating on the principle of "a step forward in giving back." Initially, care circles were developed by the Australian government in the 1990s to reduce the Aborigine people’s social problems. Transplanted to North America, care circles have become a substitute for the extended family or small community for better addressing the needs of disabled and elderly persons.

Care circles are privately organized social networks of friends, family, neighbors and volunteers that help seniors experience round-the-clock attention through individualized care plans. Care circles work on the premise that shared lives and real relationships define the central values of aging in community.

These networks stress interdependence, not merely independence, among those in need. Multifaceted by design, care circles move beyond the delivery of services into a full-fledged model of care, support and shared lives, ultimately helping elders to maintain the life they desire in community with others. A few highlights of the care circle:

1) Operates in any neighborhood, larger community or care facility;
2) Embraces all age and income groups;
3) Aims to lessen the caregiver burden by offering hands-on assistance to caregivers working with ill and disabled seniors without cost (unless seeking professional or business assistance);
4) Addresses head-on the incredibly difficult role of middle-aged caregivers, the "sandwich generation," who are squeezed between the stresses of caring for both parents and children; and 
5) Recognizes the priorities established by the World Health Organization to influence the health and quality of life of older people, including transportation, social participation and connectivity.

To create your own care circle program, you can seek technical assistance from an organization, such as Lotsa Helping Hands, that will schedule medications, transportation, meal planning, and the like to fit the needs and lifestyle of the elderly person. Volunteers sign up through the website, and choose a specific assignment for assisting a needy person.

Numbers tell the story. Members of Lotsa Helping Hands have offered mutual help and care for seniors and their caregivers to more than 1.3 million members and 70,000 communities, successfully delivering 1,400,000 meals and a multitude of other services since its inception.

Volunteers sign up to help only one person at a time on a regimented, yet flexible, schedule. This ensures that no one volunteer will be saddled with excessive duties nor will the elderly person or their caregiver be swamped with surplus attendants. The one constant throughout the process of aging is change. Local care circle members’ roles and responsibilities will undoubtedly undergo transformation as a result of elderly persons’ changes in vision, hearing, physical stamina, sleep habits and nutritional needs.

Private companies that charge for setting up services, such as CareCircle SAP, have now entered the arena. The company works with both patient and family/friends to develop a care plan that will accommodate a variety of patient needs: visits, meals, housekeeping, transportation and chores, as well as assist with drug delivery or schedule medical and social services. The company offers a free app through iTunes that helps patients and their families find the best care practices from experts and caregivers around the world.

Aside from assembling health and welfare collaborators and expanding the circle of mutual support, both Villages and care circles offer a host of "little things" that people can do for each other. The goal is to make it easier for older people to stay in their home or care facility, and enjoy their time with family and friends. For many seniors, it can be an empowering experience.

Caregivers can gain a measure of freedom when they know it’s possible for their loved one to get a ride to the doctor, receive a hot meal or have a regular visitor. Volunteers can also help seniors make a home or life in a facility more comfortable and user friendly as the senior ages. It’s remarkable how relieved caregivers can be with a volunteer checking in on their loved one from time to time, especially if the caregiver is working or the senior is living alone.

Without doubt, these innovative programs—Eden Alternative, Green House Project, Villages and care circles—address the many issues of aging in place in our diverse communities across America.

Excerpt from The ABCs of Caregiving, Part 2: Essential Information for You and Your Family, available in paperback and Kindle on

Friday, October 9, 2015

Understanding Aging in Place (Part 1)

When we hear the term, aging in place, we think of keeping our loved one in the comfort, convenience and safety of their own home, as opposed to a health care facility. What exactly does this encompass?

Aging in place implies that an older person, ideally with adequate assistance from a caregiver, can help maintain a full range of normal daily activities, including transportation, shopping, cooking, cleaning, home and garden maintenance, and a host of ordinary tasks that are taken for granted among younger, healthy people.

And a living situation that works at 70 years of age—when independence is less likely to be an issue—may not be the case for a frail 90-year-old still residing in the family home. Along with the older person’s caregiver, family, friends and neighbors can pitch in from time to time, but the optimal scenario requires a community effort to make aging in place a reality over the long term.

Aging in Community offers a more broad-based approach than the limited notion of staying in the family home or down-sized condo. Baby Boomers have watched their overtaxed parents struggle with aging by themselves, often isolated and lonely. Now these mid-lifers are seeking a more expansive model for their own aging, which embraces the idea of being "in community."

The newer model has two primary elements: staying active and involved as long as possible in their chosen home and reimagining existing care facilities. This could easily incorporate living in a long-term care facility—assisted living or skilled nursing—but without the trappings of an institutional setting, which are habitually overcrowded, understaffed, impersonal, and monotonous.

Eden Alternative 

Dr. Bill Thomas was primarily concerned with emotional well-being when he conceived of the Eden Alternative in the early 1990s as a way to alleviate the loneliness, helplessness and boredom that permeated the nursing home he operated in New York.

"What good is quality of medical care if your life is miserable?" he asked. Thomas’ original vision of the Eden Alternative focused on partnering with nursing homes to help them change their culture and environment to "create a habitat for human beings rather than facilities for the frail and elderly."

An Eden-certified nursing home moves away from the sterility of the long-term care environment toward creating a setting where personal care dominates and cohesive principles enliven both residents and staff. Eden homes aim to:

1) Create a home-like atmosphere;
2) Make a difference in elderly people’s lives;
3) Change the culture of care;
4) Train and support staff; and
5) Love, care, and live together as a family.

The Eden principles have been incorporated in pre-existing long-term facilities, where a menagerie of dogs, cats, birds and children (who may be part of an in-house daycare program) create appealing and warm living spaces. Happily, measurable medical benefits followed Thomas’ inventive approach. After two years, his first Eden facility had 50 percent fewer infections and 25 percent fewer deaths than a comparable non-Eden nursing home. Other studies show that even bedsores and dementia can be significantly reduced using the Eden Alternative.

Green House Project

Moving away from institutional settings, Thomas went on to develop another innovative method: The "Green House Project." Now, more than 100 homes have been built, starting with the idea of helping companies and individuals convert or build residential homes.

The Project’s primary goal is to provide high levels of care for persons who do not wish to be in a nursing home setting. Among other supporters, the Robert Wood Johnson Foundation has funded an innovative design, involving clusters of smaller "green" homes, built for six to ten senior residents, with outdoor space and gardens. Each resident has a private bath and bedroom, and has access to shared areas of the house at any time, enhancing sociability and autonomy, streamlining delivery of services and creating a homey environment.

Excerpt from The ABCs of Caregiving, Part 2: Essential Information for You and Your Family, available in paperback and Kindle on

Tuesday, July 21, 2015

Beating Burnout: Nine Ways to Stay Positive When Caring for Your Partner

Much has been written about the burden of care: the 24/7 day, the reluctant carer and other, less positive, aspects of the caring experience such as a lack of access to support and resources, and the issue of carer burnout. This no-relief-in-sight formula undermines both care partners.

Instead, caring can be regarded as a strategy that focuses on the benefits and rewards of being in partnership, even while living with a serious disease. Focusing on the positive aspects of caring allows us the freedom to pursue our lives, while at the same time following our partner’s progress.

Anne, pictured with her husband, Mike.

Anne Mikkelsen, a professional chef who cares for her husband, Mike, believes there are nine gifts that can be brought to the care partnership as a result of a creative and open perspective:

1. Having an open heart
Wisdom of the heart brings intuition and love into every aspect of the caring relationship. Act on the certain recognition of the circle of life: you will both give and receive along your journey. Keeping this in mind can help you gradually shift from seeing caregiving only as a duty and responsibility to more positive thinking.

Mike with his grandchildren.
2. Connecting with the Generations
Anne cultivates her relationships with sisters, adult children, and grandchildren, as well as with Mike’s family members. Everyone who wants to be is part of the fabric of kinship. Family stories, traditions, and activities – especially cooking – structure their days and provide a wealth of meaning for everyone. Even neighbors and friends are brought into the fold – some to help Mike, others to help sustain Anne’s energies during difficult times.

3. Expanding your Coping Abilities
When a family or partnership crisis happens, it’s tempting to simply allow things to fall apart and to give up the opportunity to expand your coping abilities. Anne has developed more effective and life-renewing strategies. Through the years, she has learned to accept what is, rather than strive for what can never be or what should be. A successful business owner and community organizer, she turned her creative skills into domestic accomplishments, mastering the art of cooking nutritious and delicious food that may slow down the progress of Parkinson’s. Developing new routines helps both care partners, as they make a concerted effort to appreciate each other’s needs and aspirations.

Like most successful carers, Anne has developed management skills that go beyond her entrepreneurial and culinary endeavors. She has learned to effectively deal with the often resistant health care system and to coordinate an effective care program for her husband. In many cases, this requires a somewhat confrontational manner. After all, the soft voice is often overlooked in today’s medical and bureaucratic worlds.

4. Willingness to Experience Role Reversal
Perhaps one of the more difficult tests carers face is the inevitable role reversal that occurs when one partner must cope with a growing inability to perform their usual tasks around the home – for instance, if they’d previously done more of the cooking, or the gardening, or the school run. An abrupt stand of taking over a task does not work. Instead, a heartfelt willingness to do whatever must be done to maintain sanity and wellbeing for both partners will save the day.

5. Reinvigorating Family Relationships
Ideally, caring brings all family members together to achieve a common goal: giving comfort and aid to the person with Parkinson’s, as well as respite for the primary carer. This may not always be possible if ties have been broken and a spirit of collaboration no longer exists. Both care partners should make a real effort to get all family members to put aside their individual differences and develop a sense of teamwork. This will benefit everyone.

Anne and Mike raising money for Parkinson's research.
6. Strengthening Bonds with the Community
Reaching out to your community can lead to making new friendships. Anne serves as an advocate for Mike, a role that involves working with the national and regional Parkinson’s community, as well as his medical providers. Advocating for our partners involves speaking up when they cannot. This gives us a sense of purpose and accomplishment, and shows them how deeply we care.

7. Giving Back to Others
The act of putting another person before yourself is an essential part of maintaining the fabric of our society. Think of parents, rescue teams, firefighters, and others whose job is to put the needs of others before their own. Psychologists tell us that bringing help and joy to others is a ‘feel-good’ experience, and becomes its own reward: in giving, we receive.

8. Expressing our Spiritual Values
The challenges of providing long-term care are enormous, and watching a loved one deteriorate can be especially difficult. For Parkinson’s carers, the road can be so very long – what seems like a lifetime. We have to reach inside for our very survival. Caring becomes a transforming experience when we act on our core beliefs: faith in the future, hope, and love.

Mike creating his dynamic sculptures.

9. The Importance of Self-Care
Taking care of your physical, mental, and emotional health is a top priority for every carer. No matter how much you try to be positive about the caring experience, you still must maintain a sense of yourself and be aware of your own needs. Otherwise, you will lose your sense of self, which can result in your own health problems, both physical and emotional.

To avoid this, it is essential that you develop clear personal boundaries, and carve out time for yourself each and every day. This may require accepting your own limitations and asking for help.

Anne’s strategy has been to remind herself that no one person can do it all.

Excerpt from Take Charge of Parkinson’s Disease: Dynamic Lifestyle Changes to Put YOU in the Driver’s Seat by Anne Cutter Mikkelsen and Carolyn Stinson, 2nd Edition. Bellingham, WA: Willow Island Press, 2015. Available in print and Kindle from Originally posted on Parkinson’s Life: A Voice for the Parkinson’s Community. (Author's note: This was written before Mike Mikkesen passed away due to complications of Parkinson's disease on February 14, 2013.)

Thursday, July 9, 2015

Guest Post: The Challenges of Being a Remote Caregiver

By Parker Hansen

Being a remote caregiver can be an incredibly rewarding role, but it can also trigger a host of overwhelming emotions. Here's how to deal with some of the negative emotions associated with remote caregiving.

When acting as a remote caregiver, one of the first emotions to surface is guilt. Even if you're doing a lot, you might worry constantly that you're not doing enough or that you should be with your loved one in person instead of managing care from afar. Keep this feeling at bay by reminding yourself that you have limits as a caregiver, a parent, a spouse, and a person. Do what you need to do to ensure that your loved one is properly cared for, and check in by phone, video chat, or even mail to maintain a personal connection.

Image via Flickr by Bhernandez
Dealing with drastic life changes all at once can easily lead to stress. This can be magnified if you're taking on the brunt of remote caregiving on your own. If you find yourself relying on stress relievers like overeating, drinking too much, not sleeping, or taking on other unhealthy habits, it's time to take action. Delegate tasks to other family members who can assist from afar, and spread out caregiving tasks, so that others you're close to also have responsibility for your loved one's care.

Even if you're doing an impeccable job of managing care from afar and making sure that every one of your loved one's needs is tended to, you could well be the recipient of criticism. It's no surprise that these unwanted comments can inspire anger. Instead of letting this feeling slowly build into rage, make a point of starting a conversation with your criticizer. Get to the bottom of these comments to determine whether there are misdirected emotions at hand or if there's a real issue to address.

When you're overwhelmed and exhausted, your feelings can quickly turn into resentment. While it's important to pause and let yourself have a bad day from time to time, it's even more critical to understand why you feel this way and help yourself process those feelings. Acknowledge that you've taken a lot on in order to be a remote caregiver, and you've had to make some major life changes. Know that feeling resentful doesn't make you a bad person, and seek out healthy ways to express your feelings, whether through a private journal, a trusted friend, or a support group.

Whether your role as a remote caregiver lasts for years or is only a brief stint, you'll likely encounter grief. This feeling may not result from the loss of your loved one, but rather from the gradual loss of the person he or she once was. Though you should celebrate the robust personality, he or she once had, it's important to form a relationship with the new person that your loved one becomes. Dwelling on your loss may lead you back to unpleasant emotions, but acceptance and moving forward will help you cope.

Serving as a remote caregiver may present a series of tests and trials, but you're up to the challenge. Don't allow negative emotions to fester, and be sure you have a healthy support network to lean on along the way.

Parker Hansen is a Digital Content Specialist with

Tuesday, May 19, 2015

Guest Post: Aging in Place... Adapting Your Home for Wheelchair Users

By Andrew Atkinson

Houses aren’t automatically designed for people with disabilities, for the elderly or for those that struggle to be mobile. It’s up to us to adapt our own homes if we find that we need to make changes.

A typical house is designed for someone of average height, with full mobility and a good level of stamina. How can you make changes so that your home is better suited for a wheelchair user?

Ramped Access
Ramps are the most obvious adaptation, and are among the cheapest. Some people arrange for a full, professional ramp installation while others buy temporary ramps, telescopic ramps, threshold ramps and folding ramps that can be put up anywhere and taken down again as needed.

Wheelchair Lifts
A more expensive adaptation is the addition of a wheelchair lift. These don’t have to take up a great deal of space, but you do need somewhere suitable for placement. Wheelchair lifts can also be quite expensive, though perhaps not as costly as the modifications that might be required if upper floors are no longer accessible.

Ground-Floor Bedroom and Bathroom
Being in a wheelchair might mean that the upper floors of a house become out-of-bounds territory. If that’s the case then ground-floor bedrooms and bathrooms become the most essential adaptations. You’ll have plenty of options depending on your budget, from converting existing rooms to installing garden rooms if you’re short on space.

Remember that beds, baths and showers may also need to be adapted within their respective rooms. Wheel-in showers and beds that can be raised and lowered are vital for some individuals, while sinks and toilets may need to be set at an appropriate height and outfitted with grab rails and alarm cords.

Wide Doorways
Most doorways aren’t designed for someone that can’t simply walk through the door. Adapting your house to extend the width of doorways is a bigger and more expensive task, but one of the most essential if you’re looking to make changes to your existing property rather than moving elsewhere.

Lowered Cupboards and Appliances
Even able-bodied people of below average height often struggle to access cupboards. Lowering your cupboards so that they can be reached from a sitting position can be an invaluable adaptation for a wheelchair user, but it’s equally important not to drop them too low. Ground-level cupboards are just as hard to reach from a wheelchair as cupboards that are much too high!

Ideally, kitchen appliances, sinks and countertops should be set at an appropriate height. Wheelchair users should be able to not only get around their home, but utilize its various features.

Some of us are born needing to use a wheelchair, but in many cases people need wheelchairs for the first time at a later stage of their life. We can’t always be prepared for wheelchair adaptations, but the costs of making changes can be high.

Don’t forget to look for financial help from charities and government initiatives if you need to make changes to your home, and to prioritize your modifications in order to make the most of your money.

Andrew Atkinson serves as Managing Director of the UK-based e-commerce website Ecuva, with a vast product range covering health and well-being.

Saturday, May 16, 2015

Guest Post: Living with Alzheimer's Infographic

By Helen O' Keefe

Enjoying our twilight years is something we all consider from an early stage of our lives. We put money in pensions. We plan our retirement. We look forward to spending time with our families.

Unfortunately, life can create stumbling blocks and force us to re-think our plans and the plans of those around us. Diseases such as Alzheimer’s force change on those that suffer from the disease and also those that are close to them. In instances like this, it is important that there is care and support available for all concerned. It is also of vital importance that we look after our bodies early in life in order to safeguard against debilitating illness.

Looking after our health is our own responsibility and is something that shouldn’t be taken for granted. While there is no cure for Alzheimer’s, studies have shown that exercising and looking after your body can delay, or in many cases help to prevent dementia.

Ensuring that you exercise for 30 minutes a day has been proven to improve mental health while also improving the condition of your heart. Exercising regularly and improving diet can help to combat diseases such as diabetes and cancer. Studies also indicate that bone degeneration problems can be eradicated by moderate exercise on a regular basis.

Life can be fast paced at a young age and it can be difficult to fit exercise and healthy eating into a busy schedule, but how you treat your body now can have repercussions for how you live your life in the future. Finding 30 minutes in your day could mean an enjoyable retirement to do the things you love.

In this infographic, I have sought to convey the frightening statistics surrounding Alzheimer’s. I have also demonstrated the outlook for the future regarding the disease.

I hope that this IG informs sufferers and carers and helps to improve the quality of life for those affected by the disease.

Helen O' Keefe serves as the Marketing Manager for Homecare Plus, based in Dublin, Ireland.