Saturday, 24 January 2015

Celebrating Royalty and Nobility in Ordinary Caregiving

“So Brother Matthew locked the gate behind me, and I was enclosed in the four walls of my new freedom.” Thomas Merton

Caregivers like me know how the four walls of home can sometimes close in and feel like a prison.  How to find freedom, satisfaction, meaning and joy within those walls was the subject of my book, "The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving".  

Thomas Merton was an American Catholic writer and mystic.  He entered the Abbey of Our Lady of Gethsemani in rural Kentucky on December 10, 1941 to begin a life of solitude and contemplation.  In his hugely popular book, "The Seven Story Mountain", he described that moment this way: "...So Brother Matthew locked the gate behind me, and I was enclosed in the four walls of my new freedom." I did find a sense of personal freedom and meaning in the ordinary tasks of caring over years.  I learned to look more carefully, listen more intently, feel more acutely.  I learned to celebrate the ordinary.

This week, I've been following an inspiring story about celebrating the ordinary on the internet.  It all started with this posting on the popular site, Humans of New York

Then this story appeared:

A couple days back, I posted the portrait of a young man who described an influential principal in his life by the name of Ms. Lopez. Yesterday I was fortunate to meet Ms. Lopez at her school, Mott Hall Bridges Academy.

“This is a neighborhood that doesn’t necessarily expect much from our children, so at Mott Hall Bridges Academy we set our expectations very high. We don’t call the children ‘students,’ we call them ‘scholars.’ Our color is purple. Our scholars wear purple and so do our staff. Because purple is the color of royalty. I want my scholars to know that even if they live in a housing project, they are part of a royal lineage going back to great African kings and queens. They belong to a group of individuals who invented astronomy and math. And they belong to a group of individuals who have endured so much history and still overcome. When you tell people you’re from Brownsville, their face cringes up. But there are children here that need to know that they are expected to succeed.”

And I thought, we are like the children at Mott Hall Bridges Academy - we may be invisible and ordinary on the outside, but we are ROYAL.  We too, "have endured so much history and still overcome." 

So, the next time you are feeling invisible and unappreciated, imagine Ms. Lopez' voice in your head:

"You are a nurturer, an enabler.  When the dignity of someone you love is under threat, you restore it.  You are a healer.  Your hands soothe and your voice comforts.  You are a conjurer!  When shopping for food has been put aside for more important tasks, you find something nourishing to create from what's left over.  Never forget, the worth of a life is measured in how much love we have given, because what we give will come back to fill our hearts tenfold."

Today, let us recognize and celebrate the dignity, value and even royalty of ordinary caregiving. Because Ms. Lopez would say that there's nothing ordinary about it. 


Thursday, 22 January 2015

Understanding the Needs of the Caregiver and Care Receiver

By Guest Blogger, Fay D. Wein

Introduction: According to a recent study headed by Susannah Fox, associate director of the Pew Research Center's Internet and American Life project, Americans are living longer not only due to advances in medicine, but as a result of the excellent care that is being provided by adult caregivers upon their release from the hospital. Although we now have more life extending treatment than ever before, seniors are often released from the hospitals in very fragile states, and it is the at-home caregivers that are the first line of defense.

A quick glance at the staggering numbers:

Almost 70 million adult children provide care to an elderly relative according to recent stats. The majority of these selfless caregivers provide at least 20 hours of weekly care without compensation. About 50% of these family caregivers work full time jobs in addition to their caregiving duties and 11% worked part time jobs.
The amount of money this care saves the government is something to the tune of $450 billion as estimated in an AARP study, and the phenomenon is only growing. Clearly, family caregivers are an indispensible asset in our great country, and it behooves us to take a closer look at the needs of both the caregivers and recipients for the benefit of society at large.


Emotional support.  Caregiver burnout is unfortunately all-too-common and the importance of a strong support system cannot be overstated. There are many aspects when it comes to receiving the emotional support one needs, including family support, social circle and support groups.

When family members pitch in and help one another, even when one adult child takes the brunt of the load on their shoulders, it can have a great impact on the emotional well-being of the caregiver. Many times all one has to do in order to receive that helping hand is to ask for it. While a caregiver is an everyday hero, he or she is not superman. By delegating responsibilities, the caregiver gets some much needed rejuvenating respite.

Those in the caregiver’s social circles will generally offer to pitch in with a vague ‘if there is anything I can do just give me a ring.’  It is not always easy, but as a caregiver-take them up on it! Full time care giving is no easy feat, and spreading some of the duties beyond the family can make a real difference. 

Support groups are an invaluable resource for the emotional well-being of a caregiver. Just the knowledge that there are others in a similar situation can work wonders in addition to the indispensible advice, insights, and coping tips that can be learned. There are programs that offer day care or other volunteer services which can be very helpful, as well. Ultimately, reaching out to others for support will benefit both you and your loved one.

     Personal needs: Care giving can take up a life of its own, and lead to the neglect of the caregiver's personal needs and family. Many caregivers have had their health deteriorate as a result of overextended care, according to a NAC study. Care must be taken not to allow caregiver duties to infringe on one’s work schedule or to neglect one’s own family needs or household duties.

If a caregiver begins to see an unhealthy pattern of personal neglect, depression, lack of sleep, etc. or that the loved one requires more intensive care, it may be time to consider other care options, such as a skilled nursing facility. Sometimes the help of a professional Medicaid planner is recommended when one is at that critical juncture and needs professional guidance with Medicaid-sponsored nursing home care which can be quite pricey when paid out of pocket.

     Financial help. In some states Medicaid offers a Cash and Counseling program that will cover in-home care for those below the asset and income levels for that particular state. Health care professional are aware of the many benefits of a family member proving care to their loved one and allow for payouts to be made to the senior to pay for their own care as they see fit. 

 This policy comes as opposed to the traditional Medicaid coverage method where they collaborate with professional home care agencies that do not always provide the care on a consistent basis due to bureaucratic backlog and switching of caseworkers.

This program is available in 15 states and some other states offer funding for in-home care for those just above the income or asset limit for Medicaid. Caregivers should thoroughly research their options and find out if their state offers this type of funding.


Safety and security.  A senior receiving care needs to have their safety and security needs met first above any other need. They need to be able to safely go up and down the stairs in their own home, get in and out of the bathroom, have access to any emergency device they may need and, in case of a fire, be physically able to leave the premises in a safe manner.

They also need to be secure in the knowledge that all their physical and medical needs are being met, such as, they are eating their daily meals, taking their medication on schedule and do not have to worry about getting lost around the corner of the house they’ve lived in for the better part of their lives.

     Dignity. It is common for caregivers of a loved one with dementia to revert to a parenting role and talk down to the person they are caring for. It is important to separate the dementia from the person suffering from it by keeping a picture of the victim before dementia in mind and speak to them accordingly

Caregivers need to be careful with their tone of voice to make sure that they are not treating seniors like a children, and exercise caution with word choice as well for things like diaper, bib and potty, substituting these for more dignified variations, like padded underwear, apron and using the restroom.

Use therapeutic “fibbing”. This is the process of not telling the whole truth to a person with dementia due to the pain it may cause them. So for example, if your elderly dad wants to get into the car and drive to the pharmacy hide the car keys or offer to drive him instead. Do NOT tell him that the doctor advised against it which will only cause pain and resentment. These are just some of the areas in which we can maintain the dignity of our elders while provide for their care. The key is: be sensitive to their feelings.

     A smiling face. The affect of administering care with love and a smiling face, has been proven to help those with dementia, maintain a sense of emotional balance and it enhanced their self image, especially those in an early stage of dementia. This has helped them experience less anxiety and get more satisfaction out of life.

Conclusion: Family care-giving is an important part of the senior health care system. Many suffer financial setbacks in their careers as a result of balancing their work and care-giving schedules and a large percent has opted to give up their job altogether in order to care for their parent.

These men and women deserve to be saluted for their humanitarianism and be offered the support and information that can help them fulfill their duty more easily.

Fay D. Wein is a content and communication specialist at Senior Planning Services, an industry leader in guiding seniors and their families through the Medicaid maze, servicing NY, NJ, CT and PA. Fay loves cooking, blogging, and spending time with her family.

Sunday, 11 January 2015

Can We Teach Caregiving to the Masses? Should We?

Here’s a question I’ve been pondering this week: can excellent caregiving be taught?  Imagine the perfect caregiver… someone who listens with their whole being, someone who enables the disabled with quiet dignity and humor, someone who puts their charge in the spotlight, while they retreat to the shadows.  Can these skills and talents be taught to our next generation of humankind?

Howard Gleckman spoke in his Forbes blog this week about a radical new approach to Alzheimer’s care.   He was exhorting the virtues of Dr. G. Allen Power’s book, DementiaBeyond Disease in which Power calls for us to ‘see people with dementia as having experienced a change in their world view.  We must not try to change them, but rather meet them where they are, without drugs.’

 Gleckman: He (Power) is, for instance, an outspoken critic of segregated dementia units (often called memory care) that have become the standard in many residential care facilities. At the same time, he offers many practical ideas for helping those with dementia.
Imagine someone who is extremely agitated. You can control her aggression with medication. Or you can identify the cause of her upset, and change it. Maybe she is in pain, or troubled by loud noises. She may not be able to describe in words why she is distressed. But if you know what to look for, you can learn from her body language.

If we agree with Power and Gleckman, we will certainly need to be able to teach good caregiving.  People are required to carry out this approach.  And paying for those people will depend on how much we value the altered world view and experience of those we love with dementia.
But, perhaps it’s a spiritual poverty that we healthy, younger folks feel that will ultimately drive us to teach and train excellent caregiving skills to the masses.
The very wise New York Times columnist David Brooks wrote an OpEd last week that ignited a lively discussion in my family.  Here’s what he said about a good definition of ‘meaning’ in peoples’ lives:
                                   Yet what do we mean when we use the word meaning?
The first thing we mean is that life should be about more than material success. The person leading a meaningful life has found some way of serving others that leads to a feeling of significance.
Second, a meaningful life is more satisfying than a merely happy life. Happiness is about enjoying the present; meaning is about dedicating oneself to the future. Happiness is about receiving; meaningfulness is about giving. Happiness is about upbeat moods and nice experiences. People leading meaningful lives experience a deeper sense of satisfaction.
In this way, meaning is an uplifting state of consciousness. It’s what you feel when you’re serving things beyond self.

But Brooks went on to discredit the current, more new-age seeking of meaning with its hallmarks of self-regarding emotion and immediate gratification.  He worries that our society lacks a hierarchy of values and moral architecture – that’s where the discussion in our family started: should we impose a system of moral values that is rooted in justice for the common good, or is personal freedom more in need of protection? I believe it’s a balance. 
One thing is for sure.  We won’t have any caregivers for our generation or the next if we define meaning only in the most individual terms….especially if we choose to treat our loved ones with a human touch rather than drugs.  Society's next big challenge is to create a language and culture of care that gives meaning to all our lives.

Monday, 5 January 2015

The Perfect Caregiver

Let me tell you about a perfect caregiver I know.  Her name is Glenna and she looks after my Mom for a couple of hours on Wednesdays and Saturdays.  Mom's home care agencies are littered with support workers she's thrown out - my mother resents needing help and quite often, she takes it out on her unsuspecting caregivers, especially if they are patronising.  But Glenna is different.  She's quiet, but smart.  Sensitive, but direct.  Respectful, but not fawning.  When Glenna is home, you wouldn't know it, except that the laundry is done, the kitchen is tidy, there is a sandwich and fruit plate prepared in the fridge and Mom is dressed with her hair styled.

Eva Kittay, the philosopher and disability Mom, describes the perfect caregiver as a 'transparent self':

A transparent self does not allow its own needs or vision of the good to cloud its
perception of another’s needs, and so offers no resistance to its response to
another (except, of course, when such a response would be in direct violation of a
well considered and deeply held moral belief or conception of the good). The
perception of and response to another’s needs are neither blocked by nor refracted
through our own needs and desires. A transparent self attempts to intuit and
respond to the other’s own sense or understanding of their own good, and does so
for the other’s own sake. (2007, 53)

Glenna is transparent when she gives care.  For example, a couple of days ago, I visited Mom and when I arrived, Glenna was there along with my sister Karen.  We all converged on Mom because we knew that she didn't feel well and might have pneumonia.  I watched as Glenna knelt at Mom's chair-side and asked quietly, 'would you like a dressing gown?  It's a bit chilly in here."  She didn't ask about putting a glass of ice water on the table, she just did it.  Glenna would never, ever 'show off' her caregiving skills or her friendship with Mom to us, the daughters.  She knelt beside Mom to establish eye contact and be heard without disturbing conversation in the room (Mom is slightly hard of hearing).  Glenna never draws attention to Mom's frailty or needs - her assistance makes Mom seem more able and less dependent than she is.

Glenna is a perfect caregiver and we are very, very grateful to have her in Mom's life.  But as I say in my book, The Four Walls of My Freedom, "The extent to which a carer has to become "transparent" in order to provide good care, acutely listening and watching for signs of need or distress, cannot and should not be sustained without reward and rest."

Transparent caregivers are perfect caregivers, but they are fragile.  We all need to support the integrity, strength and health of the perfect caregivers in our lives - our own future wellbeing as care receivers depends on it.

Wednesday, 31 December 2014

It's Scary Being an Aging Caregiver

Growing older always involves some kind of loss.  For my Mom, it meant giving up her beloved car.  To Mom, a car has always represented freedom and independence.  She fancies herself as a kind of Canadian Thelma or Louise - 'I've had it up to my ass in sedate!' would be her motto (that's a line from the movie).  I know that for her, looking out the window at an empty parking spot below makes her feel sad and powerless.

I still drive.  I have my health.  My particular sense of loss comes from letting go of my role as our son's primary caregiver.  My entire adult life was spent looking after our children, especially Nicholas' high needs.  I was his caregiver, but I was also 'CEO of the Nicholas Wright Corporation' - I was expert in advocating for him, managing his daily care, coordinating school affairs as well as therapies and home helpers.  Caregiving was my identity.

Now, Nick lives in a care home with a fabulous group of young and strong professional carers who are also friends.  I no longer have the strength to re-position Nick in his wheelchair.  I can't recite his complicated medication regime anymore.  My confidence in giving our son the care he requires to live and thrive is shaken - I can't do it anymore.

So, what is my new role?  I'm not sure.  One thing I do know: since Nicholas moved out of our home in the summer of 2011, I imagined that I could still look after Nick - I just didn't have to at the present.  But until recently, I thought that if anything at his home went awry, I could bring our young man back home with us and things would go back to the way they were, with me at the helm.  Now, I know that's not true.  I'm just too old for the job and that frightens me.

I'll get used to these new thoughts in my head, I know I will.  And a good part of feeling comfortable with my own frailty is trusting those who are looking after Nick now.  I need to remind myself that I do trust everyone on his care team and I need to tell myself it's OK to take a back seat.  Because magical thinking and caregiving aren't great companions.  But amid the harsh realities of aging and shed identities, there has to be laughter and sometimes, the opposite of sedate. For that, I take my lead from Nick.

Tuesday, 23 December 2014

On Birthdays and Christmases Past

This December 23rd, I am wistful about time passing.  Tomorrow is my Mom's 93rd birthday.  It seems like yesterday we celebrated her 90th - time is passing so quickly now that I am older.  We met our daughter at the airport last evening and when she walked out of the international arrivals gate, I was struck by how mature, poised and TALL she is!  (I may be shrinking!)

Tomorrow Natalie and I will drive to Montreal where we'll celebrate Mom's birthday together with my sister and her family.  I hope Mom feels well, but if not, we're ready for 'any exigency' - as Mom would say herself. 

Here's Mom on her 90th three years ago, celebrating with me and my sister Karen.

And Christmas memories came flooding back when I began to look at old photos for this blog post today.  Here I am pregnant with Natalie in 1991.  Nicholas was three then and I was in full throttle 'extreme caregiver' mode.  I'm so happy that Jim and I took the leap of faith to have our Natalie!

And busy Christmases past with our young children came and went in a blur of shouts of glee, medications given and upset tummies from too much shortbread.

Now, we are older and I want to hang on these moments of joy with our most treasured loved ones.  Tomorrow and on Christmas, when I take photos, I'll will time to slow down just a little to savour Mom's 93rd Birthday and Christmas, 2014.  

Thank you all for keeping me company in the Caregivers' Living Room.  Happy Holidays and May Good Health and Love at Home Bless You Throughout 2015!

Thursday, 18 December 2014

Why I'm Not Ready For Christmas - A Personal Update

The lead-up to this Christmas has been out of the ordinary for our family.  Some traditions have been kept: our Christmas tree is up and my freezer is full of baked treats.  Like all seasoned caregivers, I'm used to planning.  I begin my holiday baking on quiet weekends in late October.

But I haven't done all my gift shopping yet and that's unusual for me.  Buying last minute or visiting those I love in a rush is not my style, usually.  My comfort zone is to throw away my watch and visit friends and family over the holidays, feeling relaxed, knowing that the chores have been accomplished well in advance.  No stress.

This year has been different for a couple of reasons.  I've moved from writing and doing some local caregiving advocacy work to joining a couple of boards and committees that require travel and many meetings.  Don't get me wrong - I love this work and it feels terrific to have a voice on policy matters that affect families giving care. This week, I'm travelling three days out of five.

This is how I described the satisfaction I derive from activism in my book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving':

I have always advocated strongly for whatever I thought Nicholas needed at each stage of his life. But I have only recently begun to understand what this advocacy role has provided to me in return. Having a baby whom I could not feed or soothe easily made me feel sometimes like a desperate failure as a mother, but becoming an expert on therapies and political advocacy strategies helped me to experience a sense of strength and control.

Rosalyn Benjamin Darling points out in her research on parents of children with disabilities: “When parents continue to encounter needs that cannot be met by existing societal resources, they may embark on a prolonged career of seekership. The goal of seekership is normalization, or the establishment of a lifestyle that approximates that of families with only nondisabled children. Seekership results in advocacy and activism when certain situational contingencies or turning points occur.”27 Such activism Darling calls “entrepreneurship.” One has to be socialized into the role of entrepreneur, and socialized I was. The confluence of the changing role of women, opportunities for our higher education and the booming economy all provided fertile ground for the flourishing of my skills as an entrepreneurial activist. Darling continues: “For most parents, active entrepreneurship ends after they reach what they consider to be normalization,” while for some it continues to “crusadership.” These are the parents who continue to work for disabled children and adults even when the needs of their own children are met.28

Darling is right, at least as far as I am concerned, that activism offered me a sense of power, control and usefulness. Activism was and continues to be a core part of my sense of being a good mother. The opportunity to pursue entrepreneurship in the form of activism did afford me a sense of normalization and provided me with a sense of being a good mother to my son. It still does. 

For most of my adult life, I did almost nothing but look after my family.  Now, I'm drawn by other work that has impact for younger families and people looking after their elders. Working outside my home is new for me and it feels strangest at Christmastime.  And I'm discovering that balancing work and caregiving is a tricky business.  December 24th is my Mom's 93rd birthday.  Natalie and I will travel to Montreal to celebrate with her while Jim stays home with Nicholas.  Christmas Day, we'll all be together.  If the food, the gifts, the preparations aren't exactly the same as they've been other years, that's fine.  We have love in our family and we have each other.  Crusadership can wait until after the holidays.

Merry Christmas and Happy Holidays from our home to one and all!