Sunday, 20 September 2015

This Happened Yesterday

Nick has an official statement of life goals and dreams - it's called his Person Directed Plan.  For the last four years, that document has contained the following words: "My long term goal is to travel to a far destination where an overnight sleep is required."  Nick's pain management or technical problems with the handicap bus made us too nervous to travel.... until yesterday.

Yesterday we took a giant step forward in helping Nick make his dream come true.  We knew that if Nick ever went away on holiday for a sleepover, we would have to try shorter trips first.  Pain management is very tricky, making longer journeys intolerable, especially if the road is bumpy.  So, we planned the day carefully. With extra muscle relaxants and morphine in Nick's bag, we hit the road and drove to Montreal - a journey of almost two hours from his home each way.  We went to visit Grandma.  Speaking of dreams, my Mom always wants to visit Nick, but her health always gets in the way.  She pines for 'her treasure' as she calls our son.  So yesterday, we 'brought the mountain to Mohammed' and arrived in a wheelchair bus at her door.

My sister Karen arrived from a holiday up north, while the rest of her family came from different parts of Montreal to see Nick.

It wasn't the sleepover trip that's in Nick's Person Directed Plan, but it's a start.  And his next goal of overnight travel doesn't look so much like a pipe dream anymore.

Thursday, 17 September 2015

Caregivers Get Sick Too - Planning For Emergencies

This morning, I’m looking at a medical clinic appointment in my diary.  It's not a specialist appointment for our son Nicholas - it's for me.  My family and good friends know that sometimes I have trouble swallowing food.  Occasionally, a dry piece of meat or bread will lodge itself in my 'throat' (actually closer to my breastbone) and no amount of drinking water or purposeful swallowing will get it to budge.  So at this appointment, the doctor will use a scope to ‘stretch’ my esophagus and scrape out an overgrowth of webbed tissue that is responsible for my swallowing challenges.  Of course I’m hoping that I’ll be back to normal by the end of the day after the procedure.

All this got me thinking about how we parents of children with disabilities manage to cope when we’re ill or injured.  We can’t book off our children’s care for a day or two if we get the flu.  So how can we plan for the times when even the most determined and attentive parent will be so sick that help is a necessity just to keep everyone fed, bathed and safe?

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 complicated children safe and healthy.  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 do Nick’s nursing care and look after the baby 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 centers 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 neighbors 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.

12 Questions to Ask before Shopping for an Electric Mobility Scooter

Guest Post prepared by staff writers at Parentgiving

Mobility scooters are designed for persons who have some mobility, but who are fatigued either by walking distances, or walking duration, or walking exertion (on hills, in hot and humid weather, etc).  Modern electric scooters are well-designed machines that can easily cost anywhere from $600 (for low-end basic models) to $4000 (for full featured specialty scooters with all the bells and whistles).

For best application, a scooter shopper should consider the following important questions:
1.     How will the electric scooter primarily be used?  (outside of the home, in the home, or both?)
2.     Where will the scooter be stored and charged when not in use? (indoors, walkway, garage, or carport).  We would never advocate storing an expensive scooter outdoors or under a tarp (and people have told us they planned on doing that!)
3.     Will the scooter be transported in a motor vehicle?  Does this require ramps or vehicle lifts to get the scooter into the vehicle?
4.     Will the scooter be used as a Travel Scooter on trips? (Carried onto airplanes or other modes of public transportation like buses or trains?)
5.     Does the Scooter User have special size requirements? (the user is over 300 lbs or the user is super tall).  Specialty sized scooters for the tallest and/or heaviest users do exist and careful consideration should be made to ensure a proper fit.
6.     Does the user have the hand-strength and dexterity to operate the scooter controls? 
7.     Does the user have the cognitive ability to navigate roadways, intersections, and all types of traffic? (auto and pedestrian traffic)
8.     If my favorite store(s) has electric shopping carts, do I really still require a scooter in my daily life?
9.     Will the scooter be used in a gated community or resort-like environment?  Vendors such as Parentgiving sell scooters that go as fast as 18 mph  and certain shopper segments gravitate to these car and golf-cart “alternatives” in safer-to-navigate environments.  These types of scooters are becoming EXTREMELY popular and an ever-expanding assortment of custom colors, finishes, and accessories are delivering more and more consumer choice to the discerning 55 and over community scooter shopper.
10.  If the Scooter is for outdoor use, how far can it travel on a single charge?  What is the roundtrip capacity for the Scooter?  If you plan on riding your scooter into town for a day of shopping (and back), does it have the charge capacity to do so?
11.  What Kind of Accessories should I consider for my scooter?  Just as in purchasing a car, the right accessories can deliver so much more satisfaction in daily usage.  Anyone travelling in a scooter outside should consider a safety flag for drivers to better recognize them.  Other popular accessories include water bottles, extra batteries, and cup holders.
12.  If driving out of the home, will I ever be using the Scooter at night?  Some scooters come with LED headlights and can be driven at night.  Others do not come with lights and no after-market light system will make the scooter effective for night-time driving.

Here are the most common types of mobility scooters:

3 Wheel Mobility Scooters
Three Wheel Electric Scooters are the most common of all of the scooter types.  These scooters are full featured, and can accommodate larger and taller users, and are flexible enough to be used indoors at home or outside the home.  This scooter type generally offers more spacious legroom for taller users, and is easier to use indoors with its’ smaller turn radius.  Scooters in this class often carry an array of features like arm rests, storage baskets, swivel seats and more. Maximum weight capacity varies, but many models go up to 350 lbs and beyond. 

4 Wheel Mobility Scooters
Four Wheel Mobility scooters offer the most stable scooter platform, and with a wider wheelbase, are designed primarily for outdoor use.  Larger models can have studded tires and higher ground clearance and can even travel over rugged terrain. Some models offer an effective travel range of 20 plus miles per charge and a top speed of 10 mph. Because of their stable four wheel design and platform, we often see larger weight capacities in this scooter class.

Travel Mobility Scooters
These scooters are effortlessly folded and ready for transport and are perfect for the person who likes to travel. Models in this category can disassemble into 3 or 4 pieces for easy transport in the trunk of most cars. The heaviest disassembled piece on our travel scooters weighs slightly more than 20 pounds. Sealed batteries make travel scooters airline safe (but be sure to contact your airline before booking a flight). These scooters tend to be compact so we don't recommend them for users over 300 lbs or over 5'10" in height. Pride's Go-Go scooter is a
really popular choice in this class of scooter.

Monday, 14 September 2015

Buying a Car For an Older or Disabled Loved One? Check Out This Handy Info Guide!

Choosing the right car is a big decision.  But when it comes to older or disabled people, making the right choice is even more important in order to ensure safety, comfort and ultimately that independence is maintained. Wheelchair access and storage, seating positions and how clear the displays are all need to be carefully considered.

This handy info-graphic put together by CARE BLUEBIRD explains some of the best cars for older people and disabled drivers as well as 20 tips on choosing a car for an older or disabled driver:

Transportation For Older People And Disabled Drivers - An Infographic from Bluebird Care
Embedded from Care Bluebird
NOTE: This Infographic originates in the UK.  If you live in the USA or Canada, google the car model listed here and look for the North American model name.

Saturday, 12 September 2015

From The Treasure Chest: Making Peace With Age and Infirmity

On holiday in Cat Island, Bahamas recently, something happened.  Regular readers of my blog might recall that I’ve blogged about Cat Island before – it’s a remarkable place in its beauty, its simplicity and its authentic (but few) inhabitants. 

Last year, I visited an 87 year old firecracker called Miss Ella Sweeting.  Back then, Miss Ella sang  us a couple of rap songs and explained raucously that she had been banned from calling in to the Eleuthera radio station for over-using that privilege.  She was, what you might call ‘a going concern’.

This year, I dropped in again to visit Miss Ella.  Her straw work roadside stall was empty of wares, but the door was open, so I knocked and stepped inside.  There was a tiny frail woman sitting by the television.  She wore an ill-fitting black wig.  I asked if Miss Ella was in.  “I’m Miss Ella – that’s me”.  But, it wasn’t.  This woman was shrunken – her face sad.  There was no light in her eyes and she had lost so much weight that I was forced to stare, searching for the Ella I knew.

We drove back to our little beach cottage and collected groceries and cash, delivering them to our elderly friend.  Then I stopped in to “Yardies”, a local conch shack and gas station down the road.  I stopped the owner, Odette, and expressed my concern about Miss Ella’s decline.  “Yes”, nodded Odette, “her pension cheque ran out and she’s getting old.  She’s just old, that’s all.”

I have been thinking about that statement every day since we returned home from the island.  

I wondered about why I thought Odette's acceptance of the inevitability of aging was so culturally different from my own ideas of infirmity.  Recently, my mother has been ill with complications of her own advanced age - she is 92.  I get frustrated with her when she refuses to call the doctor about her pain or dizzy spells.  I want my mother to seek medical attention and to be 'cured' of her ailments.  I am so used to pestering professionals about my son Nicholas' litany of conditions.  Most recently, I have been on the road and on the phone trying to sort out a recent jump in the number of seizures he suffers each day.  

Odette's voice has been in my head with her knowing, sad explanation to me of a simple fact of life - that life ends, and it's not easy, but.... there we are.  

I am a natural-born crusader and acceptance is a state that does not come to easily to me.  But I think I need to be more humble in the face of the forces of nature.  Nicholas has a disability that cannot be cured.  The clock cannot turn back the years that my mother has lived on this earth.  

Next year, when we return to Cat Island, will Miss Ella greet me with a song or even a sigh?  I don't know.  But either way, I will return to Odette and seek her guidance on how to better accept the inevitability of struggle and pain in those we love.

Listen to what Dr. Gerda Lerner says about aging - her reflections are profound.  Dr. Lerner was a historian, author and teacher.  She was one of the founders of the field of women's history and taught history at the University of Wisconsin-Madison and Duke University.

Post Script: Miss Ella Sweeting Larrimore-Thurston passed away on January 28, 2015.  HERE is her obituary. 

Thursday, 10 September 2015

How To Be A Resilient Caregiver - Especially When Change Hits Hard

Resilience is a word that’s thrown around a lot these days.  Everyone needs it and everyone wants it, especially people giving or receiving care.   And the truth is we all need resilience the most at times of big life changes or transitions. 

We mine our reserves of strength and optimism when our children with disabilities graduate to high school, or even scarier – adulthood.  We look for ways of coping and remaining calm when our aging parents move from family homes into assisted living accommodations.  What exactly is resilience, and how can we all get some?

To me, resilience is the ability to remain whole throughout a process of change.  Profound, transformative change buffets us, threatening to fracture or morph us into forms of being that we no longer recognize as ourselves.  Resilient people do not think about change as primarily consisting of loss and they weather transition without being destroyed by it.  They see their core as impermeable and perceive change as just that: a transformation of their environment.  Resilient people look at their new surroundings and ask, “What can I do today with all of this?”

My husband’s aunt Nellie is a geriatric physiotherapist.  She helps elderly residents of Montreal to maintain their mobility and independence as long as possible.  I asked her what she thought was the principal ingredient of resilience in her clients.  “I think people who weather change the best are those who aren’t alone”, she said, and then added,  “Those who do well are the ones whose families have talked WITH them all through the planning of a move.”  Nellie explained that when an elderly person has a debilitating accident, for example, and is transported to a nursing home without prior discussions or consultations about the move, that individual is bound to be confused and heartbroken by his transition. 

I reflected on our family’s move back to Canada from England in 2011.  Our son Nicholas was to move into a care home directly from the airport upon arrival.  I thought about our entire family supporting Nick with daily visits for months after his move.  I thought about our long family discussions with Nick about his impending move from home. I remembered that I bunked in with Nick for the first couple of weeks in order to train staff and support our young man.  Certainly he wasn’t alone and for sure, he had the opportunity to voice opinions, hopes and fears about what the future might hold at his new address.   That said, transition is never easy, because change is uncomfortable.  It threatens our habitual ways of being and stresses our sense of ease in daily life.  From time to time Nicholas still expresses his worries about his life away from us and we are there to listen. 
Nick being welcomed to his new digs by family and friends - August 30, 2011

I think Nellie is right – helping someone (and ourselves) be resilient at times of transition is about understanding the power of group support and it’s about talking through the change.  The next time I feel threatened by a looming transition in my family, I’ll try to remember Nellie’s good advice, because weathering change with resilience makes us strong and wise – qualities that are like gold – beautiful and precious.