Friday, 27 February 2015

Ableism, Community Living and the Myth of Independence

Recently, I've seen a trend that worries me. Social media disability support groups are commonly hosting conversations in which independence is trumpeted as an aspiration.  That's OK, except that independence is simultaneously being presented as the most necessary ingredient to human worth.

The disability movement has always been fractured.  There are parents who seek safety and security in segregated settings, while others fervently defend their loved one's right to study and live in community mainstream settings.  There are parents of children with autism who seek a cure for the symptoms that cause suffering in their families and others who staunchly maintain it is society that must change and adapt to accommodate diversity, including disabilities such as autism. And of course, there are people with disabilities whose primary concern is employment and accessibility.  Seniors with care needs have a strong lobby. Jockeying for limited funding resources can pit the interests of various disability communities against each other, a situation in which there are no real winners.

For the most part, the choices we made for our son fell into the community inclusion camp.  But my husband and I have always truly based our choices for Nick on the best available arrangements matched up with what we thought our boy needed.  The one thing we always agreed on was that our solutions for adult living had to taken into consideration that Nick is medically complex and requires human assistance for every aspect of his life.  

I've noticed lately that public discussions within the disability community inclusion movement are not welcoming to people asking questions or seeking solutions that are not easily addressed by a model of support that is best suited to individuals with mild to moderate disabilities.  And it's not the lack of home support services that is the problem, but rather the individual's inability to learn skills that will make them more independent.  If a candidate for a housing project, for example, lacks the abilities to ensure success of that project, the person will not be welcome.  And that's not a bad thing in itself unless proponents of that project maintain that people who are not fit for purpose are selling out to a lower moral order. I am hearing people being blamed for their dependency needs.  On the other hand, if a person is perceived to have hidden talents that are valued by society generally (such as in the case of 'savants'), that person is welcome.  Where do the concerns of people with severe cognitive or complex physical care needs fit into this complicated hierarchy or worthiness? 

For many people with disabilities as well as frail elders, independence is a fiction.  For caregivers who love those who will always need the care of others, we seek to find solutions that maximize dignity, function and social opportunities.  But the first order of business will always be meeting the requirements of basic care for health and safety, life and limb.  

The discussion about how to accommodate a good life for our loved ones with care needs doesn't have to be fractious.  Communities that support the wellbeing of people with disabilities as well as our ageing citizenry must locate common agenda items and work together collaboratively to achieve broad, positive change.  The Stanford Social Innovation Review provoked lively discussion in 2011 with an article titled 'Collective Impact'.  In it, the authors propose that non-profits join forces on issues where they agree broad change must occur.  To achieve Collective Impact, organizations must engage in this process:

  1. Collaborating organizations must create a common agenda.
  2. These organizations must also share a measurement system that tracks indicators of success.
  3. Stakeholders must work together in mutually reinforcing activities.
  4. They must also engage in continuous communication.
  5. There must be a backbone support organization that coordinates, supports, and facilitates the collective process.

We must find a way forward in which all are welcome and dependency is not seen as either a weakness or a lack of imagination in problem-solving challenges.  We can do this by searching for consensus and drowning out divisive voices where the agenda does not reflect the greater and common good.  We can do this by insisting that our charitable non-profits engage in Collective Impact. 

Wednesday, 25 February 2015

Preparing to Care From Afar During Spring Break Holiday

There may be parents of children with disabilities who travel as a family during spring break, but I'll leave that subject for another post.

Today, I would like to talk about making preparations to care from afar when you leave on holiday and your loved one does not travel with you.  Spring break is an important time for many families to bond with able-bodied siblings or reignite the romance in marriages.  Taking a break from your loved one at any time of year is a very good thing, as long as it's managed carefully for all concerned.

Coordinating care from afar requires planning and coordination.  But once you've got that in place, you can relax on holiday.  Skype is a blessing for travellers and their loved ones, too.

Here's a sample check list that you can use to begin your distance caregiving planning:

1)  Make a list of people you trust to do just one job on a regular basis while you are away.  Think of extended family (even if they don't live nearby - they could call your loved one regularly).  List all the friends who have ever offered to help and include them on your list if you trust them to follow through on a small commitment.  Identify a neighbor who will check in once a day if your loved one lives alone.

2)  Use a diary to write down the tasks that you would normally perform for your loved one on the days you plan to be away.  Don't forget to include yard work or snow shovelling if that will be necessary.  Now, add in the 'extras' that you think your loved one would enjoy - perhaps an outing to a museum or just a visit at home.  Don't forget to assign someone to keep YOU up to date on  Share this diary with your friends and family and ask them to commit to one or two tasks in the diary.  You could even put names to tasks if you think a particular individual is well suited to home visits or outings.

3)  Consider using a technology to keep everyone in the loop while you are away - something like Tyze Personal Networks or Lotsa Helping Hands.  These platforms are designed to help people share the care.

4)  Ensure that your loved one has access to skype technology.  Perhaps this will mean that one friend or relative is a 'skype friend' who visits with an Ipad and logs on at agreed times to visit YOU.  We gave my Mom an Ipad for her 90th birthday and she can use it pretty well.  When we are away, we skype our son Nicholas every day.

5)  Check that there are enough supplies and medications to last through the time you are away.  You may want to contact the pharmacist to help you with this.  Make sure your loved one has enough cash and food to last throughout your time away.

6)  Write a 'Contact Information' sheet of your travel details, with flight numbers, dates, hotel contact information, emergency contacts, doctor's phone number, etc.  Share this document amongst all friends and family.

Being well prepared and keeping in touch while you're away are the keys to a stress-free holiday.  Bon voyage!

Sunday, 22 February 2015

Sayings Caregivers Hate, Such As "Let me Know If There's Anything I Can Do"

If you want something you have never had, you must be willing to do something you have never done

Fact: Caregivers need help.

Fact: Many caregivers have trouble asking for help.

Fact:  When friends and family say, "Let me know if there's anything I can do", caregivers stifle the urge to scream.

There are so many things wrong with this 'offer of help'.  First, it's a lazy response to a real need - it's an easy 'out'.  A person who truly wants to be helpful should try to imagine your situation and offer some possible actions that will lighten your load; actions that a friend will actually carry out within days.  Secondly this 'offer of help' puts the onus of asking on the caregiver which feels like a veiled way of discouraging a caregiver from actually putting in a request.

As a caregiver community, we need to have a ready response to this ubiquitous saying.

An Experiment: Think of three things that someone could do that would be really helpful.  These might include walking the dog, delivering a prepared meal or staying with your loved one for a couple of hours once a week.

The next time anyone says, "Let me know if there's anything I can do", have your answer ready.  Say, "thank you for asking, yes!  Would you....?" and just pick one task from your list of three.  At first, tasks should be one-time, simple jobs that are easy to complete.  Once people get in the habit of helping and they know your daily reality a little better, they might expand the range of their helpful actions.  Remember to put a time frame on your request - pin down a commitment.  Offering heartfelt gratitude when someone does follow through is a good way to keep them coming back.  Everyone likes to know that their helpful act has made a positive difference.

Try this and let me know how it goes!

Tuesday, 3 February 2015

Why Some People Won't Help and What You Should Do About It

Yesterday, I read an excellent blog post titled "Asking for Help" on the Caregiver Space.  The article is chock full of good ideas and practical advice.  It was the comments that got me thinking, though.  Many sounded like this:

What if no one asks if they can help? That’s my problem….. I’m here 24/7, if someone would ask if they could come stay here for a little while for me to get out, I might take them up on it, but nobody offers that….. It’s hard…’s been 3 years….. A lot of people say….call me if you need anything….. But that’s not the same as a real offer….

Others on the Facebook posting of the blog said they did ask for help, but the response from siblings was 'I think I'm busy'.  

So, what's going on with caregivers who aren't getting the help they need from family and friends? 


There's a cop in the head of many caregivers and that cop repeats things like, 'you should be able to do this alone. What's the big deal with doing laundry or shopping or banking for Mom?'  Many caregivers believe that they are shirking their obligations and actually betraying the love they feel for a dependent loved one if they ask for help.  It feels like an admission of failure in the most important job of your life.  

Caregiving websites are littered with blog posts, resources and inspirational sayings about self-care.  We've all heard that we must care for ourselves in order to care effectively for our loved ones.  So, why is it so hard to ask for help?  And why do people say no when finally the request is made?  

One answer could be that by the time a request is made, the caregiver is so exhausted and angry that the request sounds angry.  And a caregiver who is overwhelmed is not going to be asking for something small, the request is likely to be for someone to come and 'take over' for a few days.  That's not unreasonable when one sibling (or parent) is doing the lion's share of care.  But there may be a good reason that even someone who wants to help will say no in this situation.


Caregivers who aren't used to asking for help often don't share the details of their caring lives with family and friends.  Not sharing stories and information is part of the 'Oh, I can do it myself, it's all fine" modus operandi of the caregiver who is locked in the time bomb of 'look after your own' mentality.  Family and friends who are asked to help someone in an emergency whose needs they know nothing about will be afraid to help, especially if the request sounds angry or desperate.  


Change the words of the cop in the head - say instead, "I need my family and friends to be on my team.  I need to help train them. And that training will take time and encouragement."

Begin training on a good day, when everything feels under control.  Think of what members of your family naturally like to do or talents they might have.  The agenda is to familiarise your future team members on the needs of your loved one.  Remember, every caring task by itself is perfectly doable.  But taken together and over time, caregivers become overwhelmed trying to do everything alone.  Pick one task you think a friend or relative might be able to do.  Ask that person to do that task once a week for a month with a promise to re-evaluate on both sides after the trial period.  Some caregivers might not have the words to make that first request.  Try saying, "I know you love cooking and we always love all the treats you prepare.  I don't have time to cook a healthy meal every night, so I wondered if you would like to make us a meal once a week for a trial period of month or so?  You could pick a day of the week that works for you and we can check in after a month to see if that day works for us all.  What do you think?"


The reality is that most people want to help, but they don't know how.  And they see the danger of becoming overwhelmed.  That's why it's important to choose small tasks that people can absorb into their lives and feel good about helping in a way that exploits their talents without feeling out of control.  Once family and friends have some experience in helping that feels good, they will be much more likely to help out in an emergency.  They'll be your teammates in caregiving.

My book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving  (House of Anansi Press, 2014) is available from all major booksellers in the USA and Canada. 

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.