Saturday, 17 March 2018



I am very excited to host this guest post about managing post-acute care in our loved ones. In my family, we've had to learn about options the hard way. This is a great roundup of information to make decision-making about post-hospital supports a whole lot easier - Donna

Post-Acute Care for Caregivers: Managing the Challenges and Complexities of the Recovery Process
One of the most challenging experiences for caregivers can be managing the recovery process after their loved one is hospitalized.  Sometimes it’s not the hospitalization that is most difficult, but rather the specialized follow-up care that many seniors require after discharge.  This care, called post-acute care, is one of the most important parts of the recovery process.  It’s also one of the most misunderstood and difficult-to-navigate parts of our healthcare system.
Post-acute care is important for many reasons.  Patients who receive high-quality post-acute care following a major health episode experience greater and faster recoveries. It can also decrease total healthcare spending, especially out of pocket costs.

More often than not, post-acute care decisions are left to caregivers in time constrained and stressful situations.  By taking some time and using the right resources to research options, caregivers can find facilities and services that best meet their loved ones needs. 
Usually, the doctor or nurse will inform the patient and family or caregiver about post-acute care needs before or shortly after hospital admission.  In some cases, however, you might not find out what services are needed until after treatment when your loved one is getting ready to leave the hospital.  It’s important to start researching post-acute care facilities as soon as you know what follow-up care is required.  
The selection process begins with understanding what type of healthcare services are required. There are four main types of post-acute care providers, and each specializes in certain types of services and settings.
·      Medical home health care agencies provide skilled medical professionals to deliver healthcare services in the home following an illness or injury.  Common services include wound care, intravenous or nutrition therapy, injections, and physical therapy.
·      Skilled nursing facilities are residential healthcare locations for patients who no longer need to be in a hospital but require a higher level of medical care than can be provided at home.  Common services include rehabilitation therapy, speech and language services, and complex wound and medication care.
·      Inpatient rehabilitation facilities provide intensive, hospital level, multi-disciplinary physical or occupational therapy under the supervision of a doctor. Full-time skilled nursing care is also provided for recovery from severe care conditions, such as stroke or traumatic brain injuries.
·      Long term care hospitals offer the same level of care as traditional hospitals or intensive care units, but over a longer period of time (usually a month). Patients typically have around-the-clock access to physician services.
Hospitals sometimes assign a discharge planner or case manager to help plan the patient recovery journey from hospital to home.  This person can be a great resource to discuss post-acute care options.  Once you know the type and setting of care needed, there are some other important factors to consider:
·      Understand Medical Needs:
o   Talk to a medical professional to better understand your post-acute care options based on the patient’s medical needs.
o   If your loved one has a specific medical condition (diabetes, chronic disease, wound care, etc.), narrow down your search based on specialty services offered.
·      Verify Insurance Coverage:
o   Make sure that the post-acute care provider accepts the appropriate insurance and the type of care is covered under the patient’s insurance policy.
·      Compare Quality and Services:
o   Compare healthcare providers based on Medicare quality data and other important information such as patient reviews and health inspection reports.
·      Visit the Facility or Talk to Staff (if possible):
o   Ask the agency how they handle different situations and how the patient care plan and needs will be addressed.
o   If visiting, talk to current employees and residents about their experiences. Evaluate the facility’s cleanliness, amenity options, and medical specializations.
Choosing a follow up care provider is an important and emotional decision.  Make sure to take the time to support your loved one through the decision-making process. There are many resources and patient support groups available online for caregivers looking to find out more about the post-acute care process. As always with caregiving, empathy, patience, and support are the ingredients for a successful journey through the recovery process.

About the Author:
Ryan Miller is co-founder of repisodic, a healthcare company that helps patients, families and healthcare professionals find the highest quality, personalized post-acute care.  repisodic’s website ( provides free, comprehensive profiles of every post-acute care provider (skilled nursing, home health care, nursing homes, etc.) in the country in addition to resources such as guides and articles on a variety of healthcare topics.

Tuesday, 13 March 2018


I'm working on a writing project and looking through old notes. Today, I found this fascinating gem from 2011:

Yesterday, I had the most interesting conversation with our son Nicholas. On our to-do list before leaving London are two three hour skype interviews with the Ontario Ministry of Community and Social Services. These interviews are part of their process of assessment for social care funding. To prepare, I did a little research into the type of questions they might ask Nicholas and I found this example: "What do you think other people like best about you?" Nicholas uses a partner-assisted scanning system (I'm the partner and I ask him to choose from lists of words, like '20 Questions') to communicate and it's slow going. But having an existential conversation with Nicholas is worth the wait. When I asked Nick what he thought others liked best about him, I was surprised and intrigued by his response. "Different" he chose from a long list of adjectives. "You mean your disability?", I asked. "Yeah", he said. "So, you think that people like you because of your disability, because you are different?" "Yeah." Still wanting to explore this idea, I queried "what is it about your disability that you think people like?" "Still (opposite of moving)" was Nick's reply. "Wow, I think you're right", I told him. "You are a great listener. You don't run off when people are talking to you. You are very perceptive," I said.
It is absolutely true that some people like Nicholas because he is different – his disability melds with his winning personality in ways that certainly get him a lot of attention. And I think people do appreciate his stillness. I do. Throughout his life, Jim and I have tried hard to help Nicholas see the upside of a life such as his. "Never underestimate the benefits of a really severe disability", I've said when we've queue-jumped at Disney World or received funding (after a long advocacy struggle) for one to one nursing care. I feel gratified that Nicholas sees himself as having assets that are unique - and he is clear-eyed about those qualities that make him a likeable and interesting person.

Friday, 9 March 2018


This week, an online article caught my eye. It was a report on research into patients with heart disease who had undergone surgery to implant called a Ventricular Assist Device, or LVAD. Turns out that a few weeks after surgery, the patients felt much better, but their caregivers felt worse. The stress and worry about a new device made life miserable for family members, at least at first.The American Heart Associations' scientific statement on LVAD patient selection notes that adequate social support is crucial for the success of LVAD therapy, and many centers require patients to have a designated primary  (i.e., unpaid family member or friend) to help them manage their condition.
Researchers found caregiver strain worsens immediately after implant and then returns to pre-implant levels over six months, but does not further improve. The greatest sources of strain for LVAD caregivers in this sample were time constraints (no time for self-care or other obligations) and compromised social life, followed by physical strain. And the study also showed that the quality of the relationship between patient and caregiver influenced outcomes for both. We know and have always known that a good relationship with our loved one makes us happy and healthy - now researchers are starting to sit up and notice too.

This story reminded me of when Nicholas had his first 'assistive device' implanted - the year was 1990 and the device was a gastrostomy or G-Tube for feeding. Nick was only two years old and I remember being trained to use the tube for liquid feeding, but I also recall not remembering anything I was taught by the time we reached home. I think my experience is typical of caregivers whose loved one has just had a surgery to implant a device. Here's how I described that time in my book, The Four Walls of My Freedom.

A specialist feeding nurse took me aside to show me how to use the feeding tube. There was a plastic bag with a length of tubing protruding from one end, plastic syringes and a radio-sized electric feeding pump. The nurse explained that I must wash my hands with Zest soap before beginning the preparation. She showed me how to prime the length of tubing without flooding the tiny drip chamber. Next came the demonstration of how to fit the chamber into a slot in the pump, lock it in place, and then program the pump with the desired drip speed, total dose and total volume. Finally, she showed me what to do if Nicholas felt sick. “He will retch, but won’t be able to vomit except out of his tube. You can just let his stomach contents drain into a kitchen cup if he feels unwell,” she said breezily. I was still wondering about the Zest soap, but I must have nodded my head to register an acceptable level of comprehension because after teaching me how to clean the tubing with dish soap, clear water and finally white vinegar, she exited the room, leaving me to pack up all the mysterious equipment. Just before leaving for home, a patient copy of the discharge note was thrust into my hand. The contact details for the nutrition specialist were pointed out to me in case of emergency. It was a number that I would come to know better than any other.
I've always said that when Nick or my Mom get sick, I'm in high energy, high alert mode. But when they come from the hospital and recover, that's when I'm in a puddle of jelly on the floor. I'm glad someone is studying this!

Wednesday, 7 March 2018


March 8 is International Women's Day and this year, I would like to celebrate the women in our families who nurture us, love us, feed us, drive us, shop for us, and rescue us from mishaps every day of our lives.

What if 3 Wise Men were Women?

What would have happened if it had been three Wise Women instead of three Wise Men?
They would have asked directions,
arrived on time,
helped deliver the baby,
cleaned the stable,
made a casserole,
and brought practical gifts. 

Our mothers do all these necessary things for us, but so do our girlfriends and our sisters. Today, let's celebrate all the kindnesses and all the 'love in action' that women give. These tasks will never be headlines in the newspaper, but as the writer Ann-Marie Slaughter said, "Domestic work makes all other work possible." 

Happy International Women's Day to all who care for others - you are our role models, our teachers, and our loving friends.


Tuesday, 6 March 2018


Once, I came down with viral meningitis.  Natalie was a toddler and Nicholas was four or five.  At that time, an older teenager called Cali lived with us to help me with nursing and childcare at home.  She and I worked hard to keep my two children safe and healthy - we were a great tag team and shared complex nursing tasks as well as 'normal' playtimes.  But when meningitis made me realise that no amount of willpower could get me out of bed, I felt desperate.  I cried to Cali, 'what are we going to do?  You can’t look after the kids by yourself!"  My husband was travelling on business and we were living abroad, so we had no family nearby.

But Cali had a family and it was her mother who came to stay.  Mrs. Roffey came to cook, do laundry, play with Natalie and spread a sense of calm and control throughout our home.  I was lucky that within a week, I was out of bed and back to my usual routine.  I can’t imagine how awful that week would have been if Mrs. Roffey hadn’t been our guardian angel.


A caregiver 'angel' isn’t available to every caregiver, though.  That means it's essential to have an emergency plan in place for when the caregiver is too ill to carry out life-sustaining responsibilities.  For those tag-teaming with their spouse or another competent adult, an emergency plan could be as simple as promising to step in for the other in case of illness or emergency.

For single caregivers, the best place to start in thinking about creating an emergency plan is by making a list of anyone who has been helpful (or offered to be helpful) in the past.  It's a good idea to have a 'Plan A' and a 'Plan B'.  Write a draft email to a couple of prospective surrogate caregivers who have the willingness and ability to care for your child (or learn the ropes quickly).  Explain that you are creating an emergency care plan for your home and you are asking for a commitment of help to replace you, the caregiver, if you become temporarily incapacitated.  Leave no stone unturned to explore other sources of emergency assistance as well.  If you have a social worker, ask what they suggest.  Local community centres and churches sometimes have committees that can handle such family crises.  In the case of emergency care for school age children, schools are a natural partner in crisis scenario planning and so are other disability parents.

An emergency respite plan is a good thing to have.  And beginning that conversation with friends, family and neighbours could lead to greater awareness of your role as a caregiver and your need for regular respite.  The emergency planning might be an opportunity to create a network of care for your loved one.  Either way, like making a will or planning a fire escape route from your home, emergency planning in the event of caregiver illness is a great insurance policy against true catastrophe.

Tuesday, 27 February 2018


Dr. Bernard Lown is 96 and knows a thing or two about health care. He's a retired professor of cardiology at Harvard and a Nobel prize winner for his ground breaking work in his chosen field. But just like the rest of us, he's aging and sometimes ill. Recently Dr. Lown found himself in the hospital with pneumonia, attended by a young resident. "Why do the nurses wake me up every four hours to take my vitals when what I really need right now is a good night's sleep?" he complained. The resident replied that the routine was standard hospital care to which the senior doctor replied, "Well, it doesn't make any sense." And so began a friendship between two doctors, one young and one old that is leading to a movement to insert common sense into procedures of hospital care that are usually never questioned. You can read their fascinating story called, 'DOCTORS, REVOLT!' HERE.

It's funny this story appeared in the New York Times a couple of weeks after a hugely popular Twitter hashtag campaign almost broke the internet - #stupidhospitalrules. If you're on Twitter, search the hashtag and have fun reading about all the rules that don't make sense to patients and families. A lot of the complaints relate to fasting before surgeries (there are very good medical reasons for that, but note to hospitals: explain them to patients and families!). But there are lot of family members who gave voice to rules that make it harder than necessary to support our loved ones in hospital - for example, times when we are not allowed to visit (yes, some hospitals still have strict visiting hours in spite of the sensible trend to eliminate them). Visitor parking rates are a popular topic of complaint as are the fact that phone calls to extended family have to be made outside, often in freezing temperatures. These are all barriers to families giving the comfort care to loved ones that they need and we want to give.

What interested me most about Dr. Lown's observations was that he feels healing has been forgotten in a rush to prioritize 'efficiencies'. We've forgotten how to apply common sense and authentic caring in our hospitals. WE know that the wellspring of care and healing is within families. So, we should revolt too. Let's do it.

Monday, 19 February 2018


Once in a while in the life of a caregiver, the chance of a few days away from home reveals itself. A respite break might come from a community care home or it might be arranged with the help of family and friends who have offered to stay with a loved one for a few days.

But time away might seem inconceivable when we are the only knowledge keepers of our loved ones' habits, medications and preferences. Training someone new to come in for a few days seems like a gargantuan task that might be more bother than it's worth.

It doesn't have to be that hard. If you DO have an option to take a break, plan it carefully to ensure that both you and your loved one will actually relax and enjoy the refreshment of change.

1) Ease your loved one into the idea of your break slowly. If your respite plans include a stay at a care home, visit a few times before you leave and extend the time with each visit. Explore the facility and introduce your loved one to staff. Engage in an activity together there with other residents, if you can. If your plans include someone else staying at home with your loved one, ensure that everyone knows each other well before your holiday. This might mean a few home visits and even an outing together.

2) Write out a care plan and keep paper copies at home as well as online (for easy access multiple ways). Include the following information:

  • Full Name
  • Address and Telephone
  • Date of Birth and Health Card #, Social Security #, Insurance Information
  • Physician names and contacts
  • Emergency Contacts
  • Diagnoses and current medications with times and doses
  • Recent health history (if there are any recent illnesses or ongoing health concerns
  • A day/night outline of routine activities
  • A calendar of planned activities while you are away
  • A list of likes/dislikes including food preferences, TV shows, etc. 
3) Make a plan of how and when you are going to keep in touch with 'home' while away. You may ask carers to update you via email once a day - make sure you list the type of information you want reported. You may wish to know about your loved one's mood, or what they ate. Don't assume that carers will know what to tell you - they won't unless they're told. Think about how often you would like to call or skype home to speak with your loved one or their carer. A call plan will mean you can relax, knowing that your loved one can be reassured that you will call at a certain time. Or, you may decide that you prefer to speak with your loved one and his/her carer only in a case of emergency. The goal is to make arrangements that are planned and that are designed to ease stress.

4) There may be a charity that can help with the cost of care for your loved so you can have a break. Help for Alzheimer's Families, The National Respite Network and Resource Center, the National Family Caregiver Support Program and a variety of programs in Canada offer funding support for family caregiver respite.

4) Keep a photo journal of your time away to share with your loved one when you get home so that you can relive your holiday and share it with your loved one, emphasizing that he/she helped to give you a break. 

There are so many barriers for caregivers to access respite. Family and friends may not be willing or equipped to step in. Residential care may not be an option. A loved one with Alzheimer's may suffer too much from change in routine, or a non-speaking child with developmental disabilities may be too vulnerable to place in the care of others. Nevertheless, having these plans in place (or at least thinking about them) will put you in a better position if you ever HAVE to leave home suddenly. And for those caregivers who CAN get away for a break, hopefully these tips will make a holiday more relaxing.