A Stubborn Maple Leaf

For three days I have watched this stubborn little maple leaf get torn one way and another. Its stem is caught between the boards on the deck, but it just won't let go.  Given how cold it is outside, I'd be letting go as fast as I could, in the hope of being blown someplace warmer!

Doesn't it look stubborn?

 Just to give you the context, there it is out on the deck beyond my wheelchair ramp.  And here it is, 'blowin' in the wind'.

A two doctor day today.  We have now established contact with 5 different medical specialists (respirologist, urologist, dermatologist, cardiologist and physiatrist) in the hopes of avoiding long trips to London.   All have been helpful, knowledgeable and pleasant.  They've also been interested in my outlandish medical history!

Bouncing Weather

Our very moderate weather continues to bounce back and forth between a little snow, a little green grass, and a bit of each.  I can't remember as moderate a winter in years.  We've had no significant snow storms yet and none in the forecast.

 All white.

 Started to melt.

 A little white stuff again.

 Melting again.

 You could almost think about golfing!

Back to a bit more white.

Taking a break in my posts about homecare, 'cause I'm just finding SO much information on caregiving.  I'll get back to them.  Thanks for all your thoughtful comments on yesterday's post.

Being Pro-active

Being Pro-active!

Awareness of programs – With all these programs going on, you’d think I would be at least a little aware of them.  But the fact is, before we lived through our frustratingly fast learning curve last fall I was only vaguely aware of homecare services, and associated them entirely with care of the elderly.  But there are so many other situations in which some form of home care help is needed – think of families with a disabled child, or young people who have been in a disabling accident.  Homecare is actually widespread and vital,

It seems to me then, that someone should have outlined what’s available to me when I spent two months in a rehabilitation program at Parkwood Institute.  What should I expect when I got home, what decisions should I expect to have to make.  Who would be coming to see us.  Even after we got home, an overview of what was to come would have been helpful.  I’m sure we would both have felt less stress if we had known what to expect.

Being pro-active and asking questions – As people started arriving and the learning curve turned up, we knew we had to ask lots of questions and be clear about what choices we were being given in order to make good decisions.  Very quickly we became pro-active, ready with our questions and making calls to agencies to sort things out. 

Although I only lost my cool once, I can see that people who weren’t prepared to be assertive might get lost in the complex mix of services available.  Luckily Mrs. F.G., as a retired nurse, understands what is needed.  That has certainly made it easier the last 3+ months.

Service Deliverers – Just to keep the picture complete I should point out that there are actually three different organizations that deliver these services, as a loyal local blog reader pointed out to me.  The three are the Red Cross, the VON (Victorian Order of Nurses), and Care Partners.  The first two are over 100 years old; the third is a much more recently formed organization.  However only the last two operate in our region.  Our experience is entirely with Care Partners.

Stress and decisions – Needless to say our first months home have been very busy, full of meeting new people and trying to keep them straight.  The many decisions we have had to make have admittedly been a little stressful.  Just the multiple appointments which occupied our time each day were enough to leave us feeling overwhelmed.  In comparison, a glance at our January calendar, with numerous empty days, is a huge relief.  I think we’re reaching the point where life is at least a little balanced.

Counselling – One topic that I’ve thought of is the benefit of counselling.  In my case for example, my life has been totally changed by the sudden onslaught of a major disability.  I think I’d be justified in being a little upset.  I’m not actually thinking of this personally, but I would be very surprised if some people in a similar position were not emotionally stressed and could not benefit from counselling – even some gentle conversation for reassurance.

And yet, among the 25 or so different people we have had contact with, not a single one has mentioned the availability of counselling.  This is a gap in all these programs that I think should be addressed.

Home and Community Support Services

Home and Community Support Services

Yesterday I described medical homecare system in Ontario.  The other side of community support for folks like myself is a group of services that you have to pay for.  These are not medical services, but they certainly make life easier.  Home and Community Support Services of Grey and Bruce is a local organization administered by a board of 12 volunteers.  The actual work gets done by a team of over 100 staff and over 1000 volunteers.

There are 7 programs offered to local citizens, and you do not have to have a disability to qualify for these, although the elderly participate more than others.

Movin’GB Transportation – volunteer drivers will provide transportation for local errands and appointments, and long-distance driving for medical appointments.  With the major hospitals and most medical specialists located in the larger cities further south, serious illness Grey/Bruce usually means travelling.

Meals on Wheels – a service delivering hot lunches or frozen meals.  This appeals especially to those aging individuals who require assistance providing themselves with nutritious meals.  The volunteer who delivers the meals often stays for a visit, sometimes the only social contact an elderly person has during the week.

Day Away – a program that brings people together for simple social activities and meals.  For both people living alone and for caregivers, this can be a big benefit.

Overnight Relief – for people suffering cognitive impairment, a weekend at a supervised location.  This probably helps the caregiver more than the patient!

Friendly Visiting – volunteers visit socially isolated or disabled elderly for friendly conversation.

Housekeeping – trained staff will do basic cleaning or assist with grocery shopping and meal preparation.  This is one of the services we find most helpful (I used to do the vacuuming and cleaned the washrooms).

Dining Club – a chance for a good meal and an hour of socializing, but only available in two locations, necessitating transportation.

All of these services strike me as a hidden foundation of our rural communities, all these support activities going on and you’re probably unaware of them, or of who in your neighbourhood depends on these.  Most involve a fee, but it’s pretty reasonable in our experience.  When you put these together with the medical homecare programs I described yesterday, it’s a pretty remarkable system of supports for those who need it.

Tomorrow, the entrapped caregiver.

Navigating Ontario's Homecare system

Navigating Ontario’s Homecare System

For over three months since we returned home from the hospital we have been learning about the homecare services Ontario offers.  We have been completely floored by the variety of services available, and by the number of people you deal with in order to access these services.  It’s like we’ve discovered an unknown world behind the scenes, a world you’re not aware of until you need help.

There are 5 parts to the services the health care system provides.  First, there is a coordinator, who arrives about day two for a general conversation about your needs.  My top priority need is for assistance getting in and out of bed, since I am paralyzed from the chest down. 

For the actual services we have an occupational therapist who comes to consult with us about the mechanical lift I use, and my wheelchair.  We also had a physiotherapist and her assistant, who came to the house for about six weeks.  This is intended to give you time to find your own professional physiotherapy, which you will have to pay for.  Extended health care insurance often covers the cost of this physiotherapy.

What I think of as the fourth level is the Nursing Team.  They will visit once a week, and fill out a record of how we’re doing.  If needed, they will come more often, in the middle of the night if necessary.  Accessing all these professional services at home as needed seems quite remarkable to me, and very helpful for my continued recovery.  But it has left most of our fall a hectic schedule of appointments and visits - 19 in one week!  We've never been so busy.

The last level is the one we’re struggling with now, the provision of PSWs (Personal Support Workers).  These are the people who do the actual work at your bedside, getting you washed and dressed and overseeing any other personal care needed, and then using the lift to get you into your wheelchair.  Once I’m in my chair, I’m fine for the day, but I do need that personal help to get there. 

Two days before coming home we were told we would be getting help for two hours a day – great!  The next day we were told ‘oops, there are none available in your area, so you won’t be getting any help’ – not so great, in fact it’s terrible!  We realized in the very first week that we would need help with this, and in the first two weeks our only alternative was to hire a private ‘PSW’ who comes 6 days a week in the mornings.  She is both very competent and very pleasant.  She has saved our butt!

Only a month ago we started getting some evening support, at first just two nights, but a start.  Then we were told we’d be getting 6 nights a week.  That was encouraging, but so far the most help we’ve had is 3 nights, and over the holidays I think we only got support 3 nights in 12.  It would be very easy to rant and rave about the shortage of staff in this particular service program.  Finding more support to help us get me in and out of bed is our top priority right now.

There are also lots of scheduling issues with the PSWs too.  We often only hear the day before whether any help is available.  We’ve had offers of help at all hours of the day, but medically, my need is for a reasonable hour of help in the morning and evening.  Some days that is not available.

But before I mislead you, let me say that everyone who has come to the door, or been reached on the end of the phone, (about 25 people over 3 months) has been pleasant and as helpful as they can be.  They know the limitations of the system as well as we now do.  They just cannot fix the system any more than we can.

Out of this 3+ months of learning the system, I’ve reached a few conclusions.

      -It’s amazing that these services exist at all, especially at no cost to us (there are others you do need to pay for). 

      

     Given the $25.00 - $50.00 cost of keeping someone in their own home and the $500 - $1000.00 cost to keep someone in a hospital, it’s easy to see what’s economically sensible.

   

         The people we deal with have been uniformly pleasant and helpful. 

  

         But the PSW portion of the program faces a serious shortage of staff and funding.

     Tomorrow the services that you have to pay for.

Icy Shoreline

We dropped down to the bay this afternoon to see the ice 'growing up the trees'.  Splashing waves and freezing temperatures create constantly changing ice sculptures and icicles.

Georgian Bay was just rolling grey waves in the background.

I'm pleased to report that due to a widespread public outcry, the fences have come down around our parks and toboggan hills.  One victory for common sense; one loss for the lawyers!

See the orange snowfence that is no longer there?

As for yesterday's quizz, Rose got it first - they were patterns on our windows in the carwash.

Patterns

Let's start the New Year with a quizz.  We saw these patterns a week or two back and thought they would make interesting photos.  So what do you think?  What are these?