Progress re Bill 21

Bill 21, the Leave to Help Families Act, is up for debate again Monday, April 7th at Queen’s Park, thanks to your efforts after the last call to arms. I received this email from John Milloy, MPP, today:

On Apr 4, 2014, at 4:01 PM, “John Milloy, MPP” <jmilloy.mpp@liberal.ola.org> wrote:

Dear Ms.Tiffany Chow,

Thank you for contacting me and sharing your thoughts regarding Bill 21, Leaves to Help Families. I always appreciate hearing from members of the community.

I would like to take this opportunity to share with you that the government will be calling Bill 21, Leaves to Help Families, for Third Reading debate this Monday, April 7, 2014.

As you may be aware, this bill was introduced on March 5, 2013. The bill saw a significant period of debate in the House.  33 Members of Provincial Parliament spoke to this bill and 49 members participated in the debate through questions and comments. The bill was debated for 13 hours over 4 months before it passed Second Reading and was referred to committee for consideration. Debate on Third Reading commenced in November 2013. In total, there has been almost 19 hours of debate on the bill.

Listening to the debate, it’s been clear that the majority of members are in support of this bill. The Opposition parties are needlessly extending debate on Bill 21 by putting up speaker after speaker. This signals that there is no true desire to have further meaningful debate on this bill and their only goal is to delay.

I would encourage you to contact members of Opposition parties and ask them to end the delays and help us pass this important piece of legislation.

Once again, thank you for contacting me.

Sincerely,
John Milloy

Government House Leader

E-mail addresses for Opposition Critics are here.  I have sent the following to dinovoc-qp@ndp.on.ca, tarmstrong-qp@ndp.on.ca, fgelinas-qp@ndp.on.ca, rod.jackson@pc.ola.org, laurie.scott@pc.ola.org
Please do what you can.

 

Letter template:

I’m writing to you as a neurologist who cares for patients and families living with dementia. This is but one of many illnesses that often requires care from family members.In the absence of a cure, the prevalence of Alzheimer’s disease in Canada will have risen to 2.8% by 2038, pushing associated costs to $872 billion. The provision of care will have overflowed from long-term care facilities to informal caregivers, more than tripling the current 231 million hours of informal care to 756 million hours provided per year.

I find it imperative that we advocate for informal or family member caregivers, and granting Leave of Absence from work so that they can provide care to loved ones at home is an important part of that support. Having followed many of my patients for years, I feel this is the least we can do to support their family caregivers, who provide vital, individualized care with no other compensation. It is not at all clear to me why this bill has not been called to vote after 19 hours of debate. As a citizen wanting to make the most of your time, I urge you to bring this bill  to a vote.

As you know, thousands and thousands of Ontarians have expressed their support for this change.  The Leaves to Help Families Bill is a first step in ensuring changes that would have a long lasting impact on caregivers and on Ontario’s health care system. It would also ensure that people receive the care they need when they need it. Smart investments now will reduce the need for increased service costs in the future and would reduce significant pressure from formalized health care institutions.

We appreciate your support and look forward to your response.

Exit-Seeking Behaviour

I hear from many of you that one of the toughest aspects of having the patient in a facility, especially if it’s a locked unit, is their earnest efforts to get out of the facility. They may try to physically shadow you out the door when you leave or are constantly scanning for an opportunity to rejoin the outside world. In my Spring cleaning, I came across a 2002 article by Mary Lucero in New Mexico about how her long-term care (LTC) facility addresses what they call “exit-seeking wandering behaviour.”

Some important points that can lead to solutions:

  • exit-seekers believe they still have responsibilities for loved ones, their homes, and normal daily chores (so allay those concerns)
  • elopers are pretty calm and are convinced they are only mistakenly in the LTC facility. They may actually be able to convince 3rd parties (not staff) to help them get past the locked door unless they are appropriately “tagged” as residents
  • runaways are more agitated, angry, anxious, or confused about having been admitted. These folks are more likely NOT to converse about the situation and to sneak out if an opportunity arises.  Medication may be necessary to address the emotions behind this behaviour.
  • The end of mealtime is a hot time for the patient/resident to feel that it is time to GO. You may want to schedule your visit in a way that you are not leaving right after sharing a meal together.
  • Another hot time is cued by the departure of the day’s staff – they’re getting their coats on, keys out, and the patient starts to think s/he should follow suit.

The article gives suggestions for meaningful activities that could be offered at these hot times.

The article also warns against physically getting in the way of a resident who’s already on the way out the door. This can lead to both you and the resident getting injured. All good advice!

For Caregivers Planning Ahead for Themselves

Today’s NY Times Business Section alerted me to the fact that inaccurate planning has caused long term care (LTC) insurance premiums to increase – for those who already enrolled, as well as for those who are just starting up.

For those of you new to the subject, LTC insurance may be what you now wish your parent who needs supervised care had signed up for 15 years ago. It does not cover retirement homes for healthy people. It is meant to cover your care for late-life physical frailty or dementia, to prevent running your spouse or other family member’s assets into the ground.

For those of you already paying these bills out of pocket, you may want to talk to a financial advisor about what you’re paying now will look like when you are the person who needs these services in a few decades. I’ve been doing a little homework for my parents, scouting out retirement homes that have assisted living and stepped care as an option, and the ones that have the services I want them to get in their downsized life (linen service, meals cooked and available, a shuttle for errands/shopping, in-house activities) will cost a fortune…and that’s before adding the nursing care or personal support workers that they may need later.

For a sense of the fantasy end on this sort of expense, check out Kahala Nui.. This place in Honolulu is so terrific that I would move there now if I could. That said, the next level or two down STILL costs a pretty penny, and I have no idea how today’s young generation will ever be able to afford the current cost of late-life care, especially if one factors in inflation.

Opportunity for Advocacy!!

Pls do  your part? I know you all know how important this bill is:

This message is sent on behalf of Delia Sinclair, Chair, OCC Advocacy and Communications Work Group

Dear Members of the OCC:

As you know, Bill 21, the Leave to Help Families Act, has been one of our priorities for this year.  Members of the Advocacy and Communications group attended Third Reading of the Bill yesterday and it did not go to vote due to continuous debate by the opposition parties.

We are running out of time as we are on the brink of a budget being released, so our next step is to contact the Government House Leaders to encourage them to put the Bill back on the agenda and call it to vote.

Please see  template letter at bottom of this post that you can cc/paste e-mail or send immediately (by March 21st) to the government house leaders so that they can take action.  E-mail addresses are below:

John Milloy, Liberal:  jmilloy.mpp@liberal.ola.org

Jim Wilson, PC:  jim.wilson@pc.ola.org

Gilles Bisson, NDP:  gbisson@ndp.on.ca

Thank you,

Delia Sinclair, Chair, OCC Advocacy and Communications Work Group

Letter template:

[date]

Gilles Bisson, House Leader, NDP

Room 112, Main Legislative Building, Queen’s Park

Toronto, Ontario M7A 1A5

Dear House Leaders,

I’m writing to you as a neurologist who cares for patients and families living with dementia. This is but one of many illnesses that often requires care from family members.In the absence of a cure, the prevalence of Alzheimer’s disease in Canada will have risen to 2.8% by 2038, pushing associated costs to $872 billion. The provision of care will have overflowed from long-term care facilities to informal caregivers, more than tripling the current 231 million hours of informal care to 756 million hours provided per year.

I find it imperative that we advocate for informal or family member caregivers, and granting Leave of Absence from work so that they can provide care to loved ones at home is an important part of that support. It is not at all clear to me how the debate attended by the Ontario Caregiver Coalition (OCC) on March 18, 2014,has not yet resulted in the bill being called to vote. We  look to you, as a House Leader to work with your colleagues to ensure Bill 21 is not forgone as a result of unnecessary deliberation.

As you know, thousands and thousands of Ontarians have expressed their support for this change. We hope to see this matter on the agenda next week. It is our responsibility to inform our constituents of what is delaying the passage of this bill, and our 85 members are eager to provide the public good news regarding Bill 21.

The Leaves to Help Families Bill is a first step in ensuring changes that would have a long lasting impact on caregivers and on Ontario’s health care system. It would also ensure that people receive the care they need when they need it. Smart investments now will reduce the need for increased service costs in the future and would reduce significant pressure from formalized health care institutions.

We appreciate your support and look forward to your response. [Dr. Chow editorial: feel free to share your personal stories, to increase your impact and take advantage of this opportunity to educate our politicians!]

New discovery re eating behaviours from UCSF in February issue of _Neurology_

Measuring the hormones that trigger or turn off physiologic hunger has shown that patients aren’t “obeying” the hormonal signals that would curb appetites. There is not enough info yet to understand whether that disconnection is treatable, and that will be next steps. Interestingly, there were some similarities in the hormonal profile to the profile seen in bulemic patients.

The article is Satiety-related hormonal dysregulation in behavioral variant frontotemporal dementia,  by Woolley JD, Khan BK, Natesan A, Karydas A, Dallman M, Havel P, Miller BL, Rankin KP. Neurology. 2014 Feb 11;82(6):512-20. doi: 10.1212/WNL.0000000000000106. Epub 2014 Jan 10.

Book Rec

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Thanks to Dr. Stan Eaman (Buddhist and ret. BC psychiatrist) for this book recommendation: Olivia James Hoblitzelle wrote lovingly of her time with husband “Hob,” as they got through Alzheimer’s disease together. Ten Thousand Joys, Ten Thousand Sorrows was retitled and reprinted internationally in 2010. I admit I have only read the sample of the e-book thus far, but if you liked The Memory Clinic, you may appreciate the same messages from the viewpoint of this spousal caregiver whose words flow with grace.

A brief excerpt from the book:
I felt a surge of impatience, then realized that the problem wasn’t a need to hurry but my own grief at his growing disability. Impatience was easier to deal with than feeling the depth of my grief.