Wednesday, 5 December 2018

How to Save Money When Buying Mobility Aids

This week, we've been celebrating International Disability Day (December 3) and this year's theme is “Empowering persons with disabilities and ensuring inclusiveness and equality”. So there's no better time to talk about mobility aids. Access and inclusion in community was the topic of discussion on social media all day on December 3rd. But it's assistive devices that enable inclusion - mobility aids allow people with disabilities to do what they want, where they want - in other words, to lead an ordinary life. This guest blog post by Erica Sell is especially for US residents, but here are parallel funding assistance programs in Canada. - Donna

The cost of brand-new mobility aids (powerchairs, mobility scooters, walking aids, etc.) can, unfortunately, be exorbitant. Not only that, there is anecdotal evidence from consumers that vendors have charged inflated prices for adaptive equipment. These unscrupulous traders focus only on their greed and heartlessly charge ridiculously high prices for mobility products.

Have the mobility equipment you need and save money. (Image Source: Wikimedia Commons)

With that in mind and with household bills and other possible medical expenses to think about, it is natural that you’d seek money-saving alternatives. To avoid paying an arm and a leg for mobility devices, do not purchase straight from a distributor if you can help it. Instead, take a look at these more affordable ways of getting your mobility equipment:

Check Federal and State Grants

The US government offers Medicaid for adults. This is a federal and state program, actually the largest in the country, for low-income citizens. Aside from being designed for adults, children, and pregnant women, it also covers the elderly and individuals with disabilities. So, before you buy a stairlift or a wheelchair straight from a supplier, check first if you qualify for a government grant.

Since this program is both a federal and state initiative, the benefits differ from state to state. However, they are comprehensive. Mandatory benefits include home health services, inpatient hospital services, transportation to medical care, and more. Medicaid can certainly pay for a power wheelchair if you meet the coverage and eligibility requirements.

Those requirements vary in each state, so it is best to check with yours for the details. Generally, you must fall within the resource and income limits set by the government and be considered medically needy. If you are already receiving SSI (Supplemental Security Income), you are considered automatically eligible for this benefit.

Take note that a power wheelchair is covered by Medicaid if you have a medical need for it. In other words, you must obtain a prescription from your doctor stating exactly that. To apply for this government grant, visit the Medicaid agency in your state right away.

Approach Charities and Other Funding Assistance

Aside from government programs, you can also approach charity institutions or other funding establishments to help you with your assistive equipment needs. Each of these institutions has their own eligibility requirements. If you qualify, then you need not spend a cent on your mobility equipment.

Silver Cross, for example, provides funding assistance for mobility equipment in the US. You may want to contact them and other similar organizations. Look for grants for disability equipment in your city or state as well.

They’ll likely need you to fill up a bunch of paperwork and prove that you are eligible. Be prepared with documents from your physician or therapist as well. It is standard procedure for charities and any organization providing grants to require these as evidence of your need.

But once all of the paperwork and other eligibility processes are done, you can have your mobility equipment at no charge or for a very low price (if the grant covers only a percentage of the device’s dollar value).

Consider Mobility Equipment Rental

Renting mobility aids and other assistive devices is yet another great option if you wish to save money. This is especially useful if the need for the equipment is temporary or if you are expecting an easing of your finances in the near future. In short, there is no need to buy right now if you don’t have to.

Erica Sell grew up in Northern California. After attending Pepperdine University and graduating from UCSD, she decided to extend her passion for helping people in need into a successful business. She created Harmony Home Medical in 2008. Erica is a Certified Assistive Technology Professional (ATP) and Certified Aging in Place Specialist

Tuesday, 20 November 2018

A Time to Feel Grateful, Sometimes After Loss

My husband Jim and I are packing this morning - we've got an early morning flight tomorrow to Dayton, Ohio. Our daughter Natalie's boyfriend grew up there and we're all meeting at his family home to celebrate Thanksgiving. 

Sipping my coffee, I began to think of all things I'm grateful for this year. Mom died on August 16 and in lots of ways, I still can't believe she's gone. But I searched for gratitude in the last year of Mom's life and this is what I found: 

  • I feel grateful that just before Mom died, my sister and I went with her to a lovely hotel in a small town where her parents grew up and married. We reminisced about family history, explored pioneer gravestones (and found my great grandparents' markers)! We slept in the same room with views of the lake, a fire burning in the grate. 
  • I am grateful that Mom had wonderful carers in the last year of her life - they loved her and she loved them.
  • I feel grateful for my sister. Even though we've always been close, sometimes when life gets very busy, we take each other for granted. But we are hyper-aware of each other now, sharing our grief and our family memories. We've been holding hands a lot over the last few months. 
  • I feel grateful for my husband Jim and our new puppy Daisy. I love my life and the chance I have to walk outside in the forest - nature heals my heart and soul. 
  • I feel grateful for the love in our family, for our precious Nicholas and Natalie. I am grateful that Nick has been healthy and strong over the past year and that his carers love him. I feel grateful that our Natalie is thriving in her work and in her life with someone she loves very much. 
  • I feel grateful that I have the opportunity to reflect on my life and share with so many others who, like me, have a life with caregiving at its heart.
Most of all, I am grateful that over the years, I have learned some lessons of resilience. I have learned to feel deeply grateful, especially for the love in our family. I hope you feel the love of family, too. Happy Thanksgiving to all my American friends and family! 

Friday, 16 November 2018


During this National Caregivers Month of 2018, it's important to hear directly from YOU, caregivers on the front lines of love and commitment. Here are some tips compiled by the information and support program, Embracing Carers.

How can you provide the best possible care for an aging parent or a loved one with a serious illness, while also making sure YOUR OWN health and stress don’t fall by the wayside?   This problem is increasingly prevalent as more of America’s workforce serves double duty as caregivers for aging parents, spouses, or children with special needs. In the United States, an estimated 65.7 million unpaid family caregivers provide care for someone who is ill, disabled, or aged. These caregivers spend an average of 24 hours per week providing unpaid family care, and 1 in 4 caregivers invest over 40 hours each week.

With that kind of schedule, who has time for self-care?

As a result, many family caregivers feel stretched for time and resources, so they sacrifice their own health in order to care for those who need it. They reduce or quit their exercise regimens, eat poorly, sleep irregularly, cancel their own doctors’ appointments, bottle up their feelings, and skip the social events that help them emotionally recharge.

To help caregivers better navigate these challenges, Embracing Carers™ asked dedicated caregivers from across the U.S. for their top self-care tips. Here is some advice they shared:

Dyan Alexander (Annapolis, MD)
“Realize that you cannot be all things to all people, and acknowledge that you should reach out for help when (and even before) you need it. Most importantly, don’t let guilt take seed. You are doing the absolute best you can, which is exactly what your loved one needs.” 

Dave DiBella (Pittsburgh, PA)
“Choose your battles. Being fitness and nutrition-minded, it was very difficult to not be concerned about my mother’s daily nutrition. But early into my full-time caregiving role, I realized that I wasn’t going to save my 92-year old mother from her inevitable passing by insisting that she eat more vegetables. Once I “let go,” it was really enjoyable to just ensure that she was getting foods and treats she really enjoyed. Obviously, everyone’s circumstances are different, but my advice would be to be more discerning about what really matters most.” — Dave cared for his mother around the clock in her final months of her battle with Alzheimer’s

Kristen Lasko (Washington, D.C.)
“Accept help (which can be hard to do)! As a caregiver, you will need the help of others. Even if you think others won't do something as well as you could, or it's something that you enjoy doing, sometimes you have to let others into your home, your to-do-list, and your life to help you to stay afloat.” — Kristen cares full-time for her son Max, who has Spinal Muscular Atrophy, a life-threatening genetic disease that renders Max unable to walk, eat, breath, or speak on his own.

Jackie Schwabe (Milwaukee, MN)
"Ask for help.  You are the best caregiver for your loved one, but you are not the only caregiver.  This is a marathon, not a sprint.  Ask for help so you can continue the journey." Jackie Schwabe

Jon Strum (Los Angeles, CA) 
"My one piece of advice is very similar to what you hear every time you listen to the pre-flight safety speech on a plane. "Make sure your own mask is secured, and then help the other person. In other words: Make sure you're taking care of the caregiver, so that you'll be there for your loved one." 

Dick Akers (The Villages, FL)
“Follow through on your dreams, even if it means a little extra planning.” — Dick serves as the primary caregiver for his wife Ellen, who was diagnosed with early-onset Alzheimer’s shortly after their retirement. Dick and Ellen recently took their “trip of a lifetime” together — a cruise through Europe — with help of dozens of caring and attentive airline and cruise ship employees, tour guides, and fellow passengers.

Eboni Green (Omaha, NE)
"Fill your cup! Recently the saying “you can’t serve from an empty cup” has taken on new meaning to me in my life as a caregiver. So that rather than my goal as a caregiver being to prevent from serving from an empty cup, I consider that my cup must be overflowing so that I serve from an overflowing cup. Now this may sound a little selfish, but my advice is to make sure your cup is overflowing before taking on anything additional. This way you avoid the likelihood that you will burn out. In this analogy the full cup represents the practice of self-care while caregiving. Ways that you may fill your cup might include doing the things that you love. For example, spending time with family, reading a book, taking a hot bath, and participating in work or a career that you find meaningful might fill your cup. The final takeaway is that you mustn’t commit to taking on any additional duties or task unless you have overflow from your cup that can now be dedicated to another interest. If your cup isn’t overflowing the answer to taking on any additional tasks must be “no” as your focus should go back to making sure you are spending time to do the things that fill your cup."

Cathy Clarke (Niles, IL)
 The one thing I have learned in this journey, is that if I didn't find a way to take care of myself and get the rest and time away, I was exhausted and not only unable to properly take care of him, but my work suffered as well. Even if you do not have an outside job, caregiving touches every aspect of your life, so the above still holds true. That is the #1 priority for caregivers - getting the proper rest for themselves and time away to recharge their batteries. I found it to be a very difficult thing to arrange, especially with few monetary resources and no help from government agencies at all. This is one of the challenges for those with resources that are scant, but just enough that is can still disqualify them because they are so close to the line; many fall through the cracks, like we did, and are left to cope alone. I wish this could be addressed, as the very poor can get help, but those who aren't quite poor enough cannot get anything at all, yet they have few resources of their own.

Launched in 2017, Embracing Carers is a global initiative led by Merck KGaA, Darmstadt, Germany, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. It is understood that caregivers play a crucial role in the lives of patients. What is less understood are caregivers’ needs for resources and support focused on improving their own health and well-being.  And while significant progress has been made in certain areas/geographies, serious gaps remain. Embracing Carers™ addresses this by highlighting the unmet needs of caregivers’ within the US and around the world; by empowering caregivers to advocate for their own health and wellbeing, and by driving a call to action for support of caregivers including support within healthcare systems.  

About EMD Serono
EMD Serono - the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the U.S. and Canada – is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases. The business is committed to transforming lives by developing and delivering meaningful solutions that help address the therapeutic and support needs of individual patients. Building on a proven legacy and deep expertise in neurology, fertility and endocrinology, EMD Serono is developing potential new oncology and immuno-oncology medicines while continuing to explore potential therapeutic options for diseases such as psoriasis, lupus and multiple sclerosis. Today, the business has approximately 1,300 employees around the country with commercial, clinical and research operations based in the company's home state of Massachusetts.

Monday, 12 November 2018


I was speaking with a friend today about fear in caregiving. The fear that we might forget something very important, the fear that dismissing a symptom now could provoke a crisis later, the fear that we are not good enough in the face of love and serious illness. 

As it happens, my friend is a doctor - someone who cares for very medically complex children. He is deeply empathetic and so needs to practice a discipline of self-awareness and self-compassion in order to avoid burnout. 

He said, "I have realized that much of the time, my discomfort and dis-ease comes from fear. Fear of concrete things and experiences in front of me and fear of imagined outcomes to imagined circumstances.  I have learned that to move along with a deeper sense of being grounded, I need courage.  I'm not sure the fear really goes away, but it now has a friend along in courage." 

Describing how he summons courage in caring, my friend explained, "I plant my feet, breath deeply and prepare with focus and intention to muster courage."

How many times have I mustered courage in the face of fear? Often, very often. And I know every caregiver does this very regularly - overcoming fear is an essential component of staying, of abiding with the suffering of our loved ones. We talk about the courage of patients afflicted by disease or disability. But we don't often talk about courage in caregiving - the kind of quiet bravery that enables us to dry the tears of a frightened parent or assess the pain of a non-speaking child with cerebral palsy. If we collapse, weeping, it is alone afterwards. We try our best to be strong and truthful with our loved ones. We act to provide comfort. And that takes courage in the face of fear.

Thursday, 1 November 2018


This year for National Caregivers Month, I want to reflect on why so many of us do not identify as caregivers. 'Caregiver' is a problematic word for lots of reasons, not least among them that it seems to betray the love and loyalty we feel towards those who need our help. The word amplifies the dependency and helplessness of our loved one - the very person whose dignity we are attempting to protect by minimizing the visibility of their needs. But if we want to build a society in which caring is valued and supported, perhaps the starting point is re-thinking the meaning of 'caregiver'. 

What does caregiving have to do with cooking? Just ask Rajiv Mehta, the founder and CEO of The Atlas of Caregiving, a care mapping tool that I champion in the new book that Dr. Zachary White and I have co-written (out on June 8, 2019) - The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver

Rajiv says that caring is like cooking. We all cook. But some people are professional cooks while others simply heat up pre-prepared food. There are home cooks and gourmet cooks. Our food preparation is influenced heavily by our culture, our memories and our family relationships. Caring is the same. It is an activity that we all participate in, one way or the other. Caring is part of life, not separate from it.

Today, on the first day of National Caregivers Month, I want to salute those caregivers who are immersed in caring - those passionate amateurs who have learned to be expert in both their technical care skills and in offering personal consolation and comfort. In 2018, let's remember Rajiv's call to think about caring like we think about cooking - a natural and nurturing part of everyday life. 

Tuesday, 30 October 2018

Three Little Words That Caregivers Long to Hear

My friend Julie Drury is the bereaved Mom of her beautiful daughter Kate who passed away after a long journey of illness and pain resulting from mitochondrial disease and the invasive efforts to cure it. 

The other day, Julie posted this message on Twitter: 

These days Julie chairs committees and speaks often at conferences relating to patient experience and health care transformation. I've been thinking so much lately about those three words in her tweet: I BELIEVE YOU. So often I needed to hear those words too, especially because Nick denies pain (he is afraid if he admits to not feeling well that he will end up in the ER). But all of us who are close to Nick know his particular signs and signals of pain or illness. We need others to believe us when we put up our hand for help. 

My Mom needed others to believe her too, when she had severe stomach pain. All the tests were normal and yet, Mom was doubled over, gasping for breath. "I believe you." That is what she needed to hear and often, I remember myself instinctively saying it. 

Validation of our caregiver experience is a central component of solace and healing. We need to be comforted in our darkest hours and hearing someone say, "I believe you" is one powerful way to ease our distress. 

Friday, 26 October 2018

What the Heck is Happening? I'm a Caregiver?

Caring for a dependent loved one is a chaotic business. There isn't much time for reflection, let alone laundry and grocery shopping. I'm always thinking, "If we can figure out a framework for planning our days, then maybe life would be a little easier." Some of those frameworks I've talked about before are Amartya Sen's Capability Approach (I used this approach in my book, The Four Walls of My Freedom to analyze what kind of help was helpful in our family) and the F-Words of Disability (a wellbeing framework designed for children with disabilities, but it works for anyone). 

Today I want to introduce an idea that I borrowed from the community development work of Cormac Russell and John McKnight at Nurture Development and the ABCD Institute, respectively. McKnight and Russell talk a lot about enabling marginalized communities to escape cycles of dependency by systematically supporting the sharing and talents and gifts of people in order to address their own challenges within neighbourhoods. The Asset Based Community Development movement developed the 'To, For, With, By' framework as a way of understanding how social services work in ways that are often oppressive. But today, I want to borrow this framework and think about it another way. 

As caregivers, we often do things 'TO' our loved one, especially in the case of cognitive impairment. Sometimes we dress our loved ones even when they don't want to get dressed or we guide them into a bath and shampoo their hair. Certainly in our family, I've given medications and tube feeds while our son didn't miss a beat watching his favourite show on TV. There are many things we need to do TO our loved ones and they need us to do to them. Sometimes these actions are negotiated - our son told me that he doesn't want to be consulted on his medications - he just wants whomever is helping him to get on with doing it 'invisibly'. 

And caregivers spend a lot of time doing things FOR our loved ones. "Here, let me do that for you": that's what we say when we see someone making an effort to reach a magazine or to put on a sock. It's an empathic reaction to assist when asked to help in one way or another. 

Then there are the times we perform chores or engage in activities WITH our loved ones. I loved to arrange flowers with my Mom and I love cooking with our son. I smile when I think of being absorbed in an activity that we enjoy together - these are the delicious moments of caring for someone who is loved. 

The hardest nut to crack though, is BY. In my caring life, what are the activities that I've helped my Mom and our son to do by themselves? How have I managed to help them achieve independence? Can I be doing this more and have I slipped too easily into doing TO and FOR instead of WITH AND BY? I'm going to think this over and seek opportunities to balance these aspects of caring. And I'm going to ask our son if he is happy with the balance. I'll report back on that conversation.