Interview by Jennifer Paterson January 10, 2020

In 2018, 25 per cent of Canadians, or 7.8 million people, aged 15 and older provided care to a family member or friend with a long-term health condition, a physical or mental disability or problems related to aging, according to data published this week by Statistics Canada.

This compares to 8.1 million people, or 28 per cent of Canadians, when the data was previously published in 2012.

While the numbers are decreasing, the issue is that fewer caregivers are having to do more, says Audrey Miller, managing director of Elder Caring Inc. While the data showed 64 per cent of caregivers said they spent less than 10 hours a week on these responsibilities, 15 per cent spent 10 to 19 hours and 21 per cent spent 20 hours or more.

Read: Elder care costs Canadians $27B annually in lost income, vacation

Also, while the 2012 data found 35 per cent of Canadian caregivers are juggling work with their responsibilities, the latest data didn’t delve into this area. “I don’t know if that number has changed,” says Miller. “That information isn’t here. . . . Having said that, the information is going to be the same as it was in terms of absenteeism, presenteeism, challenges that mainly women have who are looking after parents. That continues to be the bulk of the carers.”

Indeed, the latest data found half (47 per cent) of all caregivers reported caring primarily for their parents or parents-in-law in 2018, while about 13 per cent reported providing care to their spouse or partner and eight per cent said they provided care to their child with a long-term health condition, or a physical or mental disability.

“Providing care to children can be a challenge, given that children often require more intense care, but also because many caregiving parents are active in the labour market,” noted Statistics Canada. “Despite the often competing demands of care and working in a paid job, the parents who provided care for their child typically spent just over 14 hours on caregiving activities per week.”

Read: How to support working caregivers

In 2018, about 70 per cent of caregivers said they received some kind of support or assistance for their caregiving duties. The most common source of social support was when the caregiver’s spouse or partner modified their life or work arrangements to help (45 per cent).

However, many caregivers don’t receive the social or financial support and assistance they require. In 2018, about one-third of caregivers said that there was another kind of support that they would have liked to have received in the previous year. These included financial support, government assistance, and tax credits (68 per cent); home care or support (40 per cent); information or advice (39 per cent); and help from medical professionals (36 per cent).

Since December 2017, when the federal government made changes to employment insurance benefits aimed at helping caregivers, it has received an increasing number of claims for the benefits. In 2018, it said it expected to receive about 22,000 claims for caregiving benefits by fall 2019.

“There’s more financial support and there’s more talk [from the provinces] about caregiver benefits and allowances,” says Miller.

Read: More than 8,000 caregiving EI benefits claims since Dec. 2017: Feds

But employers also have a role to play in terms of the information and advice required by caregivers. “There’s a lot out there,” says Miller. “People don’t know how to access things. People don’t know how to navigate the system. . . . The insufficient supports lead to poor mental health, caregiver burnout and high, high stress. It’s very hard to function on the job when you’re worried about other things.”

So what can employers do? “I think being aware is No. 1 — not having your head buried in the sand,” says Miller. “Being able to offer some lunch and learn services that aren’t going to cost the employer big dollars. . . . We’re not going to resolve issues, but we’re going to be able to provide answers.”

In addition to services from human resources and an employee assistance program, many employers and employees may not be aware that their extended health benefits also offer an option. “Registered social workers visits are frequently covered,” says Miller. “The consultation . . . isn’t going to break the bank, but when people know they can submit [the claim] because, even though we’re talking about their parent, I’m consulting to you, adult employee, as you’re having the issue.”

Welcome to 2020!  Truly hard to believe that we are in a new decade. Time seems to have flown by.  As I sat down to write this blog, I wanted to start the new year with some good news.  I thought I would update readers about the long awaited spousal unification program.   In fact I blogged about this very topic in January 2017 with the following story:

‘After 70 years of marriage Norman and Mae are told by our government that in order to get the care they need, they need to live separately. Certainly there is something not right about this statement, yet as hard as it is to believe, that was the story reported in the National Post on Jan 6, 2017.  At age 94 and 91, Norman and Mae have enjoyed what can be considered a long life and an even longer marriage. The article indicates that they have always lived together- no easy feat at any time. I sincerely doubt they ever anticipated having to live separately in order for them both to receive publicly funded care in a Long Term Care facility.

As we age we may not always have the same health care needs as our partners. A couple’s different care needs may be able to be met in the community if finances permit either at home or in a retirement setting. However when care needs exceed what can be met in the community, many look to Long Term Care facilities, our publicly funded ‘nursing’ homes.

Norman and Mae had both applied for Long Term Care.  According to the story, Mae was offered a bed at her preferred setting. By the way, one typically has 24-48 hours to make a decision as to whether to accept the placement or not. If she accepted the bed, Norman would be on his own, which the family felt was not manageable. She passed on the placement bed so she could remain with her husband. Only a few short weeks later, Norman was offered a spot at the same facility where Mae had declined the bed offer. However due to Ministry policy her name had been removed from all of the waiting lists and she now has to wait 3 months before she can even reapply. There was no mention how long the initial waiting period had been. Many of the ‘preferred’ homes have wait lists of several years.’ This has not changed since this blog was first written.

I don’t know what happened to Norman and Mae but  I continue to read about many other couples who find themselves in similar situations.

In December, Waterloo MPP Catherine Fife and the ‘Till Death Do Us Part Act’ passed second reading. It must still pass a third and final reading before becoming law.

It’s a new year and a new decade and I am in an optimistic mood.  The government is reportedly investing $1.75 billion over the next five years to create 15,000 new LTC beds and will also redevelop 15,000 older.  Maybe this is the decade where we will have adequate beds available and couples will be able to  live together in a publicly funded facility and receive the care they need.

 

It is hard to believe that  Christmas and Hannukah start next week.  Truly, where does the time go?  Well, given that we are here I thought I would repost a holiday blog.

The holidays can be a wonderful time to spend together with loved ones, remembering the meaning of the season and celebrating together. When visiting with and sharing time with a family member who has dementia, the challenge is with the expectation. The Alzheimer’s Society notes that often caregivers must deal with feelings and emotions that arise when remembering past holidays when their family member was well. They may also feel overwhelmed with trying to maintain holiday traditions while keeping up their care giving responsibilities. They may worry about visitors who don’t feel comfortable around a person with dementia or about meeting expectations of friends, family and themselves. They may even feel guilty for not being able to get into the holiday spirit.

The person with dementia may have an equally difficult time coping with the holiday season. They may find that they feel a particular sense of loss at not being able to participate the way they once did. They may find it difficult and anxiety inducing to deal with the influx of guests and the change to routines. If you find yourself in this position, there are things that you as a caregiver can do to reduce stress for both yourself AND those you are caring for.

For caregivers, it is important to recognize your limits and take time for yourself. Try to change the expectations you place on yourself and others. Keep other family members and friends informed of your loved ones’ medical and cognitive status and seek help from them when you need a break.

To help make the holiday season less stressful for your loved one, and thus more enjoyable all, MAREP, an Alzheimer’s research organization has provided some great suggestions:

Take your time – synchronize your pace to that of your family member with dementia. The holiday season is about enjoying quality time with family and excessive entertaining activities can be overwhelming
Plan one activity at a time – multitasking can lead to frustration for everyone. Understand if your family member doesn’t seem to appreciate the efforts of an elaborate dinner – they may be happy to be in your company and get anxious with all of the activity and fuss involved in meal preparation. Alternately, they may enjoy being included in the preparations for the holiday meal.

Consider the noise level and multiple distractions that cause a person with dementia a great deal of stress when with large groups of family or friends. Do not be offended if they want to go home immediately after eating dinner. Be considerate of the words “do you remember” as this often places pressure a person to reminisce and remember specifics if they have memory difficulty. Sharing photo albums of previous holiday celebrations can assist with a relaxing form of reminiscence.

Provide a quiet place for a family member with dementia to relax – they may need some time to relax to continue with the activities of the season.
Set priorities and a routine for the holidays in advance. Decide what is most important and focus on those priorities.

Include the person with dementia in decision making around the holiday plans and listen to their preferences and hopes for the holidays.  Go for a drive/walk to watch the lights, play games (your own Hannukah or Christmas traditions)and sing holiday songs.

Gift ideas can include:

Talking and sharing stories Looking at photo albums together.
Listening to music and watching old movies together. Hand lotion and a hand massage can be very well received- gentle touching can be appreciated. For those in the later stages, picture books of animals and babies are often well received. For the caregiver, providing some respite time can be a wonderful gift and one that is priceless.

Stress and the holidays may seem to be inextricably linked but by planning outside the usual box, these tips will hopefully reduce stress for both you and your family member with dementia.

Tomorrow is GivingTuesday

by Audrey Miller on December 2, 2019

in Articles & Blogs by Audrey

This past weekend was the American Thanksgiving.  In Canada we knew it was their Thanksgiving because advertising for  Black Friday sales was everywhere.   First it was on Friday, then it included Saturday and Sunday and now we have Cyber Monday.  What a concept!  While I tried not to be taken in by the advertising, I failed.  Our 10 year old television finally died and Best Buy was advertising some good prices…… so, I succumbed.  But sadly it did not stop there.  Some of the sales were very enticing and, in a cognitive dissonance sort of way, I thought about all the money I would be saving if I purchased the online specials that kept popping up on my browser.  And save I did!

Fortunately there is penance to be had with Giving Tuesday tomorrow.  I can dissuade any guilt by giving to those less fortunate.   According to givingtuesday.ca, this is “a global movement for giving and volunteering, taking place each year after Black Friday.  The ‘Opening day of the giving season,’ it’s a time when charities, companies and individuals join together and rally for favourite causes.  In the same way that retailers take part in Black Friday, the giving community comes together for GivingTuesday.”

GivingTuesday was originally started in the US in 2012.  Last year in Canada,  6500 partners came together for GivingTuesday, impressively $15 M was donated on line.  It is a targeted day of  giving back.

Regardless of where you are in Canada, some special ‘giving events’ have been organized. 

Philanthropy within the estates’  world includes pre planning and  bequeathing monies to charities and organizations as part of one’s estate. While this is a fantastic way to support your favorite cause, you don’t need to wait until you have passed to see your monies being spent on a worthy cause- other than yourself.

What are you going to do tomorrow?

 

Originally posted @allaboutestates.ca

Remembrance Day is a significant day in the lives of many who endured the challenges of living during war times. As benefactors of their sacrifice, we sometimes forget that peace is a gift and the high price that was paid for it. Today we have young soldiers who are returning from war, many of whom are returning with a disability. “Centres of Excellence’ across our country will be opening to provide short and long term rehabilitation treatment for our returning soldiers. I remain hopeful that funding will be available in order to meet their life long needs, including retraining, reintegration into society, accessible accommodation and counselling support. It is not only remembering their sacrifice but also ensuring that they have full funding and timely access to goods and services for their rehabilitation and integration in to their communities. They deserve no less.

Veterans Independence Program

The Veterans Independence Program (VIP), developed in 1981, is a National Program that assists veterans to remain independent in their own homes. The primary caregivers (including a spouse, common-law partner, adult child or another individual) who were taking care of the veteran at the time of their death or admission to long-term care can also qualify to receive these benefits.

Eligible survivors may receive housekeeping and/or grounds maintenance benefits. As well, housekeeping services may include: vacuuming; laundry; making and changing beds; cleaning floors;dusting and general picking up; kitchen and bathroom cleaning; meal preparation; appliance cleaning;washing and changing windows; and errand services to purchase food, do banking, pay bills.  Ability to access the services is dependent on health needs and whether these services are available to the veteran through some other governmental program.

Lest We Forget…..

  • Tips for Keeping Your Brain Young: Get enough sleep. Older adults don’t need less sleep than younger adults.
  • Getting less than 7 or 8 hours of sleep at night can make it harder to concentrate and remember.
  • Get rid of stress.  Over time, stress can make it hard to get a good night’s rest. Stress can also make it harder to concentrate, learn and remember.
  • Exercise, prayer and meditation are good stress relievers.
  • Think, think, think. The more you use your brain, the better it’ll work. Read.
  • Do that crossword puzzle. Play bridge. Join a discussion group at a senior center or church. Take a class at your local community college. Learn to play the piano or speak another language.
  • Socialize.  Spending time with other people also seems to give your brain a boost. Find ways to meet and get to know others. Join a club.
  • Volunteer. Try a part-time job.
  • Eat right. A diet that is low in saturated fat (the kind found in fried foods,butter, cheese, beef and pork) but rich in fruits and vegetables and B vitamins is good for your brain. Your diet should also include a couple of servings of fish, especially salmon, tuna, sardines, and mackerel, each week. These fish are high in omega-3 fatty acids, which are good fats that your brain needs. Ask your doctor or nurse if you should also take multiple vitamin daily.

Source: Foundation for Health in Aging
Established by the American Geriatrics Society

Dementia and MAID

by Audrey Miller on November 3, 2019

in Articles & Blogs by Audrey, Dementia, Uncategorized

Originally posted @allaboutestates.ca

Medically assistance in dying (MAID= Bill C14) for eligible Canadians was passed by federal legislation in June 2016.  To recap, eligibility includes:

  • Being 18 years and older and mentally competent
  • Having a grievous and irremediable medical condition
  • Making a voluntary request for MAID that is not the result of outside pressure or influence
  • Providing informed consent.

Grievous and irremediable has been defined as:

  • Having a serious illness, disease or disability
  • Being in an advanced state of decline that cannot be reversed
  • Experiencing unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable
  • Being at a point where your natural death has become reasonably foreseeable which takes into account all of your medical circumstances and does not require a specific prognosis as to how long you have left to live

One does not have to a fatal or terminal condition to be eligible for medical assistance in dying.

Informed consent means receiving all of the information required to make a decision at the time of your request AND immediately before medical assistance in dying is provided.[1]

Given the above criteria, for those individuals who have been diagnosed with a dementia and have indicated that when in the future, they have declined to a point when they no longer (recognize family/ communicate/ feed themselves/ respond  to those around them/able to get out of bed/breath on their own) have not been eligible to request MAID.

This past August 2019, a Victoria man became one of the first Canadians with a dementia diagnosis to have received MAID.  Dr. Stefanie Green is the physician who provided the medical assistance.  In a recent interview she shared:  “His care ‘seemed very much on the edge….The risk of not meeting the eligibility criteria, or not being found to have done so properly, is a criminal offence, which leaves me liable to go to jail for up to 14 year.’”[2]

Dr. Green expressed: “This is not an expansion of our law….This is a maturing of the understanding of what we’re doing.”

This is a difficult and very important topic.  A team of Canadian experts recently authored a paper to provide guidance to clinicians who assess and provide MAID in Canada.  Their report is linked here  https://camapcanada.ca/wp-content/uploads/2019/05/CPG-dementia.pdf.

I found the examples in the Appendix reflected the medical status of many clients with whom I have worked over the years and I wonder how many wanted a different ending.

 

 

 

 

[1] https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

[2] https://www.cbc.ca/radio/thesundayedition/the-sunday-edition-for-october-27-2019-1.5335017/b-c-man-is-one-of-the-first-canadians-with-dementia-to-die-with-medical-assistance-1.5335025

November 2019 Newsletter

by Audrey Miller on November 3, 2019

in Newsletter, Uncategorized

The gusty wind and leafs on the ground tell us that another season has passed and we are heading into cold months ahead. As a younger person, winter was enjoyable, but now I would prefer warmer days with more daylight. But wishing doesn’t make it so, at least in Canada, so how best to prepare? In addition to November being Falls Prevention Month (which is the focus of this update), it is also known as ‘National Nachos Day and National Bittersweet Chocolate Almonds Day (yup in the US); Movember (Men’s Health Awareness Month) and Make a Will Month. Given our forecast for snow, I thought I would share some information that I hope keeps you steady on your feet.

The Seniors Health Knowledge Network shares their research that provides tips, exercise and information. Nobody expects to fall but unintentional falls are the leading cause of injury for Canadians aged 65 and older and 81% for seniors admitted into hospital were as a result of a fall. Many sustain a brain injury and/or a broken pelvis. Prevention is the best we have to offer. I hope this information is helpful.

Originally posted @allaboutestates.ca

I had a wonderful opportunity last week to be part of panel discussion on CTV Your Morning to discuss issues that are critical for seniors. Certainly an important topic as we approach election day.

The National Seniors Strategy is really the document that outlines what needs to be done. I cannot comment on what the parties promise or what they will implement, but I know that much work has gone into a solid document that outlines a number of key issues. The research and report were written in Jan 2016, with Dr. Samir Sinha taking a lead role. They identified 12 policy issues under ‘four overarching pillars or themes; and supported by five core principles essential to understanding the needs of Canada’s ageing population.” The principles identified are:

1. Independent, Productive & Engaged Citizens (remaining independent and productive)
Making addressing ageism, elder abuse and social isolation a national priority
Ensuring older Canadians do not live in poverty (increasing CPP for example)
Ensuring access to affordable housing and transportation
Enabling age friendly physical environment and spaces

2.Health And Active Lives
Ensuring older Canadians are supported to engage in wellness and prevention activities that enable healthy aging ( ie falls prevention)
Improving access to medically necessary and appropriate medications
Ensuring older Canadians and their caregivers are enable to participate in informed health decision – making and advance care planning

3. Care Closer To Home (person- centered, high quality, integrated care close to home provided by those with knowledge and skill)
Ensuring access to appropriate high quality home and community care, long term care, palliative and end of life services
Ensuring access to care providers that are trained to specifically provide the care they need ( there are under 300 geriatricians in Canada)
Developing standardized metrics and accountability standards to enable a National Senior’s Strategy

4. Support For Caregivers (acknowledge and support the family and friends who provide unpaid care)
It is estimated that unpaid caregivers provided care that would have cost our system around $30 Billion
Ensuring older Canadians are supported in the workplace (does your company offer Elder Care as part of its Employee Assistance program?)
Ensuring caregivers are not penalized when taking on caregiving roles (caregiver tax credits, caregiver allowances, greater flexibility in the workplace)

The ground work has been laid, now it is up to the parties to outline how they are going to achieve and implement these recommendations.

Originally posted @ allaboutestates.ca

Last week I had a pleasure of attending the 100th birthday of one of my (favourite) clients. She is one of the lucky ones as she still lives in her own home and is able to afford 24/7 care. She has a wonderful care team who have been consistently providing care to her for over 4 years. They were initially providing a few hours a day and over the years, as her needs changed, they increased to 24/7.

I first met Audrey (yes that is her name) in 2015 after her younger sister fell and was admitted into hospital for hip surgery. I was referred to ‘the sisters’ by her long time trust officer who was handling their finances for them. She knew that the sisters could use some assistance and I was invited to meet them at the rehabilitation facility.

Audrey was 96 at the time and was fiercely independent. Neither used any mobility aids nor received any caregiving or housekeeping assistance. They did everything themselves. Neither had married and they had always lived together- looking after each other.

Since her sister’s fall, Audrey would take a taxi to visit her daily, who was then an in- patient at a rehabilitation facility. A few days after first meeting them, I received a call from her sister to tell me that Audrey had not shown up to visit her, as she had routinely done every afternoon since the fall. Long story short and several hours after receiving this concerned call, I was able to track Audrey who was at the emergency department of a nearby hospital. She had fallen on the slippery walk way outside her apartment building and lay there until a neighbour called 911.

The GEM (Geriatric Emergency Nurse) nurse told me that she had cut her forehead very badly and had received over 25 stitches. It was 9:00 pm and they were about to send her home in a taxi- alone. That very evening was the first time a caregiver started working with them, I arranged to have a PSW meet her at the ER and accompany her home and remain with her overnight.

It is now almost 5 years later, her younger sister has passed away and Audrey continues to live well in her own home. She wanted a tea to celebrate her birthday and together we ordered some new clothes, chose the foods she wanted to serve and the type of birthday cake and decided on the few guests who would be invited. I was able to arrange birthday greetings from the Queen as well as from our Governor General and from her local Longos where she had been a long time customer since they first opened their doors over 20 years ago. With her permission I am sharing her 100th birthday celebration photo. Ziggy was number # 1 on her guest list. Audrey is one of the lucky ones. With thanks to her very caring trust advisor, Audrey has been able to live the life she wanted- remaining in her own home and being well looked after.