Let’s Talk About Caregiving (and Muscular Dystrophy)

The quality of mercy is not strain’d.

It droppeth as the gentle rain from heaven

Upon the place beneath. It is twice blest:

It blesseth him that gives, and him that takes.


Whether you are a caregiver or in need of one, navigating the art of caregiving can be tricky. This article offers insights and information to make caregiving easier and more enjoyable for all involved.

A Circle of Care

The client: Claire

As a middle-aged woman wholly reliant on caregivers to maintain the activities of daily life, I will share what has worked best – and what hasn’t – when it comes to working with caregivers. I live with a rare, progressive form of muscular dystrophy called facioscapulohumeral muscular dystrophy (FSHD or FSH). Although my advancing condition is often quite the emotional roller coaster, my mental faculties remain high functioning.

The spouse: Lou

I have been married to this beautiful and wonderful woman (Claire) since 2007, and caring for her for about the last six years. At the same time, she’s been taking care of me in many ways. My experience in caregiving has been gained by taking care and supporting her in this part of our lives. At times challenging, caregiving is also very fulfilling. Love and patience are most certainly the main ingredients.

The agency owner: Kimberly

I have been a caregiver since I was a child helping with my great-grandmother, and professionally for four years. I have primarily worked in clients homes one-on-one. I was the owner of a home care agency with a wide range of clients from basic companionship, total care, and end-of-life. I reached out to Claire in response to an ad she placed online, which led to her adding me and my staff to her care team.

The full-time caregiver: Maya

I have 12 years of experience working in the healthcare field as a Home Health Aide. I have worked in nursing facilities and privately. I enjoy helping people with their daily needs and the rewards of a one-on-one relationship. I responded to Claire’s post on Craigslist, and I now work full-time for Claire. Our time together includes special outings, planning community events, and playing lots of Scrabble.

The part-time caregiver: Melissa

I have dedicated myself to the care of others for 12 years, both professionally and privately. I’ve stepped up when nobody else would for many remarkable people. The loss of several family members left my life empty, but caregiving made it full and meaningful again. I first met Claire in a rehab facility. Now, I assist at her home as a private caregiver.

The substitute caregiver: Caleb

I have been a certified nursing assistant for three years. I’ve worked at clinics, hospitals, and home care settings. What brought me into the health care industry was when I started to care for one of my aunts who was diagnosed with cancer. I found my calling; I witnessed first-hand the need to provide support and create a positive healing environment for others. I am now a substitute caregiver for Claire in her home.

The therapist: Talia

I have been in the field for 12 years. Most of my clients have had caregivers. I have worked in the hospital setting, home setting, inpatient setting and in the crisis setting. Claire is my client.

Initiating the Caregiving Process

When is the best time to begin looking for a caregiver? And where is the best place to find them?

Claire: Quality caregivers take time to find, and the lingering pandemic doesn’t help. Unless it’s an unforeseen accident, I would highly recommend you start integrating caregivers sooner rather than later. I place job postings with the most success on Craigslist and care.com because I am most interested in private caregivers. I have also worked with agencies with varied amounts of satisfaction.

Kimberly: From an agency perspective, most people tend to wait until their situation becomes dire before reaching out for help. This delay creates unnecessary stress for everyone involved. I recommend starting the process much sooner than you might think necessary because it takes time to get the right match. Staffing shortages have become commonplace, and it sometimes takes a while to provide coverage. Most people start with an internet search when wanting to hire through a local agency. Be sure to check their reviews and ratings.

Maya: I recommend planning well ahead to figure out what type of caregiving assistance you will want when the time comes. Will you go with a private hire, agency or move into assisted living? What can you afford? These are questions most people dread thinking about, let alone discussing with family members. Waiting until the last minute can cause so much extra stress for everyone involved. Having a game plan is always a good idea even if the plan changes.

Caleb, Maya, and Kimberly together with Claire

A Quality Interview

Lou: When interviewing caregiver candidates for my wife, either in-person or when pre-vetting over the phone, we have found the following list of questions helpful:

  • Tell us a little about yourself
  • What is your history as a caregiver?
  • Why did you become a caregiver?
  • What are your strengths when caring for others?
  • Do you understand the crucial importance of being on time and reliability?
  • We are looking for long-term help. What are your life plans for the next two years?
  • How do you handle a situation when a client is having a rough day, i.e. emotional stress, depression, or anxiety?
  • What do you know about muscular dystrophy? (Alter to suit your needs/condition.)
  • What days/evenings are you available?
  • Do you have any physical issues or limitations?
  • Are you familiar with using a Hoyer Lift or Sara Stedy (Sit-to-Stand Lift)?
  • What is your experience with grooming a member of the opposite sex?
  • Are you fully vaccinated for Covid-19 and the flu?
  • Please provide two references that we can contact

Kimberly: If you’re choosing an agency’s services, the staff will have been pre-vetted through their hiring process. That said, you can certainly ask the agency questions, such as:

  • Tell me about the candidate you plan to send, including how long has he/she been a caregiver?
  • How much notice is needed for requesting to activate or terminate services?
  • Is there a minimum requirement of hours per visit?
  • How are services billed?

The Importance of Training

When initializing service with a new caregiver, what talking points best ensure a healthy working relationship?

Talia: Setting clear expectations and even clearer boundaries with a new caregiver is important to ensure that everyone is working towards the same goal.

What makes for an effective training? And how long does that generally take?

Claire: Advanced FSHD can be an extremely exhausting condition. Every activity, especially training, requires energy, energy that must be carefully managed. It is best to allow a more experienced caregiver with knowledge of my needs to train a new caregiver, and to do so in three to four hour increments. If a new candidate is not picking up the basics after a day or so, it’s best to let them move on, as disheartening as that may be for everyone involved.

Kimberly: Training is certainly important, but it’s very different for each client. The focus of training is to get both the caregiver and client comfortable with the requirements of the specific case. Sometimes that’s as quick as showing the caregiver how to use the appliances, discussing routine (when to change bed sheets, do meals, meds, etc.), and setting realistic expectations. Other clients with much higher needs, as is the case with Claire, will take longer to train in order to go over proper lifting with Hoyer or how to safely transfer to commode or wheelchair. The length of training typically varies based on caregivers level of retention and experience, but could be anywhere from 30 minutes on up to two full days depending on the situation. Effective training is when the caregiver can safely and comfortably do the requirements of the job without assistance.

Melissa: Training reduces caregiver stress and burnout. When possible, working hands-on together with a caregiver experienced with the client is the most effective way of training. Taking the time to learn the client’s unique needs and schedules will help both the caregiver and client. Once both parties feel safe and comfortable with each other, then the caregiver can move forward with confidence.

Claire and Lou out for a spin

Good Communication is Key

Claire: Clear lines of communication enhance the caregiving experience. I recommend creating a binder that contains essential information for all caregivers, and which is especially helpful for new trainees. My binder is entitled Emergency Care Playbook. It contains the following information:

  • Contacts
  • Local emergency contacts
  • Daily caregiving routine
  • Medications
  • Medical history
  • Doctors
  • Copy of health insurance card
  • Craigslist ad for reposting
  • Interview questions
  • PT exercise instructions

In addition, we have hung a large whiteboard that I can see from my bed that is sectioned off with the following categories:

  • Inspirational Quote or Prayer
  • Life is Good (things I’m grateful for)
  • Reminders
  • Upcoming Appointments
  • Happy Memories and Love Notes

Maya: Communication between caregivers is also essential to managing a client’s care needs. Caregivers should relay important information to each other as a team such as doctors appointments, schedule adjustments, and significant changes with the client’s physical, emotional, or mental health. It’s also important to communicate with your client. Having a binder with important medical information, emergency numbers, and care needs for the caregivers is very helpful as well. Keep that book updated as care needs change.

Caregiving and FSHD

How does caregiving for someone with advanced FSHD differ from other clients?

Kimberly: Every client situation is different, but some conditions differ dramatically when finding caregivers. Some clients need assistance with stepping into the shower, but once seated, they’re able to do the bathing on their own. Others might need help getting dressed, but need very little assistance regarding personal hygiene. A client with advanced FSHD needs someone who is comfortable and capable of assisting in every aspect of life, from personal care to minor physical adjustments to emotional support. Imagine not being able to scratch your arm, cross your legs, brush your teeth, feed yourself, text a friend, or do pretty much anything in life without assistance. A person who can think clearly with no cognitive decline, but not able to move their body for themselves. A client with advanced FSHD needs a caregiver who is able to feed them meals, give full showers, dress them, floss and brush their teeth, assist with toileting, turn them in bed, transfer in/out of bed, and help with correspondence (texts, emails, calls, blogging, social media, etc.). In addition to physical needs, the emotional aspect of care is also very important. A caregiver needs to be positive, have good energy, be able to wipe away tears, and offer a calming presence for their client.

Melissa: Caring for someone with advanced FSHD can be all consuming. General fatigue and overall muscle weakness can effect the client’s physical ability to do the things that more abled individuals find easy to do, i.e. type, walk, lift objects, even talk. At times you are the client’s hands, arms, legs, and voice. Educate yourself about the disease. It will help you care for your client more efficiently and effectively. Also, finding the humor in the little things can help deal with everyday stresses. Don’t exclude people with FSHD from activities because you think they can’t participate. Claire has shown me that anything is possible. Despite her physical limitations, she stays active. She sets goals and helping her fulfill them is a great joy. From swimming, scootering, blogging, online Scrabble, and event planning. There are tough days, but providing emotional support always helps.

Caleb: A deeper holistic approach is required in caring for patients with advanced FSHD. As a caregiver, you need to be more involved in their care. Physically, you must have the strength and skills to appropriately assist in client physical functions that may have either diminished or are lost entirely. Depending on the degree of physical disability, more than usual psychosocial and mental wellness support may be needed, such as being a positive companion, making sure they still have means to communicate with their social circles, and encouraging them in making autonomous decisions in their care.

Kimberly and Claire enjoying the sunset at the Grand Canyon

Moving On

What caregiver behaviors are red flags of diminishing job performance? Worse yet, what are signs of neglect or abuse? When is dismissal imperative?

Claire: Being cared for puts you in a position of extreme vulnerability. If a caregiver is not working out, it’s important to remember that despite your dependency for care, there are always other options. It is worth the time and effort to find a replacement when a caregiver creates more stress than he or she alleviates. I had to learn this lesson the hard way.

Lou: We dismissed a longtime caregiver who repeatedly exhibited many of the following red flags for many months: regular tardiness and calling out; an increase in personal problems and not wanting to talk about them, even if it is effecting the relationship with the person for whom she is caring; complaining about how she hates her life on social media while she’s at work; loss of a caring attitude; no communication except for what is absolutely necessary; and more concerned with housework than with taking care of the person needing care. Whether the caregiver’s change in performance was due to burnout, personal drama, or pride, after repeated attempts to constructively discuss the situation with no positive outcome, we let her go.

Melissa: Signs that caregiver job performance are diminishing include negative attitude, short temper, and unexpected outbreaks of emotion. Once compatibility and work performance becomes too stressful, unprofessional, or ineffective, it’s time to find a replacement or give that caregiver a break.

Caleb: When a caregiver exhibits signs of dismissiveness, an unwillingness to listen, unreliability, and inconsistencies such as not providing constant safety precautions or lying, then the caregiver should be re-evaluated. Dismissal is imperative when the caregiver is stealing (including stealing time,) physical or emotional harm is being caused, or when inappropriate practices puts a client at higher risk of such harm.

Talia: If a caregiver starts showing any of the following behaviors, it’s important to address them directly as soon as possible: not completing daily tasks, disclosing too much personal information, being late, frequent absences, or being too distracted on the phone. If such behaviors continue, then changes need to be made. A caregiver asking for money should always be a red flag, and I highly discourage you from fulfilling such a request.


Can you talk a little about caregiver burnout, and how this condition is best avoided?

Claire: The more labor intensive caring for my condition has become, the greater amount of caregiving I have scheduled in order to reduce marital stress and caregiver strain. As eternally grateful as I am for my caregivers, it’s important to note that potential burnout goes both ways; those of us being cared for get weary too. Requesting and needing care for every human necessity can be mind numbingly boring and physically and emotionally exhausting sometimes. Some days, it takes enormous self-restraint to maintain my equilibrium.

Melissa: Caregiver burnout happens. To avoid this, a caregiver should know their limits and be honest with his or herself and the client.

Rewarding Excellence

How do you reward quality caregiving?

Claire: My loyal and talented caregivers are my greatest blessing. Everyday, I try to offer them my gratitude and admiration for who they are and what they do to make life more manageable, productive, and enjoyable despite FSHD. My husband and I offer the best pay rate we can afford, occasional bonuses, and regular outings.

Maya: It’s important to remember that those being cared for also need gratitude and encouragement. Living with a disability can be hard, and genuine, positive feedback goes a long way in providing quality caregiving.

Helpful Links

Lou and Claire at Portland’s Rose Garden

Let’s talk more about caregiving…

Red Scooter Diaries plans to elaborate on this topic. In the comment box below, please submit your questions and input regarding any aspect of caregiving. We will do our best to address your comments in the next installment. Thank you.


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