caregiving at home

I have been having an interesting discussion, in the light of the issues around staffing and home care.

One Facebook group has created a 'cause':
Don't Give Up Your Parents For Addoption! (sic)

I am very much afraid that this misplaced concern will have a negative effect on caregivers. Until you've walked in my shoes, you do not know what I have faced as a caregiver.

We need to make decisions that are best for the entire family, not just the ailing senior. There are insufficient professionals around, at all levels.

I was asked if there was home care for my father if I would have kept him at home.
My response:
Like your badge says, it is a matter of choice! My father was incontinent, had dementia, and could not longer walk. I had a full time job. It was the best choice for all of us! My husband required 2 years of physio and massage therapy after he put dad back to bed. Dad would plead with us to either get him out of the wheelchair, or to undo his seat belt.

I would not have kept him home. Not at all. There is no one to offer such care in our small town, population 600 in the shoulder seasons, 1,000 in summer!. We do not have enough staff for Red Cross or the other agencies. In Muskoka Lakes they are constantly advertising for staff.

Our house is poorly constructed for wheelchairs, small doors, and there would be no bathroom/shower on the main floor for him. He couldn't walk upstairs. He was angry and upset most of the time. No one talks about the emotional and social impact of dementia, just the memory issues. It is a terrible burden for family and many people expect that the best thing is to keep them at home. It is not true.

In another e-mail, I was asked to create some awareness around the myths of dementia. For one thing, not all dementia is caused by Alzheimer's Disease. That is a huge misconception. The other issue is that memory problems are simply a clue to brain dysfunction, and should be watched. Many ignore it and hope it will go away. It will not and it will get much worse. The issue is lack of oxygen, or lack of functioning in brain systems. The autonomic functions continue (breathing, digestion, etc.) but higher level thinking skills, social functions begin to deteriorate.

Based on your writing about this disease, which is affecting more and more Canadians, we are asking you to help us raise awareness of this problem. Let caregivers know that they are not alone and that other people are affected by the behavioural problems brought on by Alzheimer’s and, most importantly, that help is out there.

According to the Alzheimer’s Foundation for Caregiving in Canada, Alzheimer’s disease currently affects more than 450,000 Canadians and, more specifically, 1 in 11 Canadian seniors, according to the Alzheimer’s Society of Canada. This number is projected to grow and within just five years, 50 per cent of Canadians will be affected in some way by Alzheimer’s disease.

We want to make sure that, along with the more often talked about memory loss associated with this disease, Canadians are also aware of the behavioural symptoms that develop in nearly all patients with Alzheimer’s disease.

The personality changes in those experiencing dementia are most difficult, after either a good relationship, or in a previously dysfunctional family.

Their tendency to be a flight risk is challenging. We had one person in town (with dementia) walk several km south to the next town until the police finally found him. His daughter was mortified and scared silly. (They primarily walk in a straight line!) Another woman walked hours away from home through downtown Toronto. A security guard spotted her.

Those suffering from dementia have behavioural issues that often cannot be managed. Often they do not recognize caregivers and loved ones. Their displaced anger, agitation, Sundowner's Syndrome, and frustration, plus their lack of inhibitions, are frighteningly difficult to bear.

The great myth is that memory issues are the worst part of dementia. This is not the case. My father would bang his fists on the table saying, "It's all gone to hell!" (A word he would never have uttered previously.)

He grabbed the arm of a staff member in anger; refused to have baths. He would pull the fire alarm. Wandering into stranger's rooms. He was depressed.

Caregivers often have severe emotional reactions to dealing with failing loved ones. We are all at risk in this situation. Having done Hospice volunteer work, I am trained, I know the pitfalls. Some caregivers need medications to get through the emotional and mental health issues. I ended up on anti-depressants. Burned out and unable to do my job.

So get the help you need. Early identification, diagnosis by a medical practitioner, find a geriatrician with experience in this field. Watch for polypharmacy. Take notes when visiting a physician.

Nursing shortages

A recent E. Ontario headline:

Crisis on the doorstep

"With more people needing in-home medical and physical help and not enough workers willing to make house calls, the region's $120-million home-care program is being stretched to the limit"

This is an issue that is having a profound effect on all Ontario Seniors. It is difficult finding enough health care workers at all levels of service. Hospitals are closing beds, in an attempt to cut back dollars, yet their are many who require support at home.

The government's big idea, begun in 2007 when I sat on the Aging at Home Strategy for our local LHIN 12 (North Simcoe Muskoka), was to enable seniors to find ways of staying in their homes. As the above articles says:

"The staffing crunch casts doubt on a three-year, $700-million provincial plan to clear hospital backlogs by having the home-care system provide more services."

We cannot find enough trained staff. In north and central parts of our province this issue is exacerbated by the distances staff must travel to provide home care. As with Children's Aid Society services, staff must travel a half hour between towns and clients, for example. Any time a nurse or PSW must visit a client they must drive a half hour, and PSWs are not paid enough to compensate for their time and their mileage.

The big agencies take staff from the smaller ones. Working in a hospital is far preferable to working in someone's home. Alternate Levels of Care placements must be carefully chosen. Staying in your home might make everyone's health worse.

PSWs must be better trained, regulated and paid well for the work they do. This is a key message. After several groups have been formed, some are lobbying for this.

• PSW Network of Ontario
• PSW Canada

But we still do not have enough staff in enough towns and cities. Seniors need help with ADLs, as well as home maintenance, lawns, snow, transportation. It is a complex issue.

safe, secure, healthy seniors

There comes a time for some elderly, when poverty, elder abuse, neglect or incapacity renders them unable to live alone safely. Unsanitary conditions are difficult for some of us to resolve.

There are some solutions for family members concerned about seniors living in filth, with the causes ranging from mental health issues, such as depression, or physical issues, such as the inability to see the dirt and dust, or the ability to do the house cleaning.

One interesting post in an American caregiving blog wrote eloquently about possible causes and solutions.

Mental health issues, of course, have an impact on the ability of a senior to live alone in a clean, sanitary house. Issues like mold, if one hasn't the funds to fix it, can cause further ill health. Seniors, like my parents who lived in the Depression, can develop the insecurity to hoard. I know of friends who have helped a parent move and have found the 84-year-olds high school notes. My husband found that his late mother kept every piece of junk mail, as well as inserts in her utility bills.

In these situations, it is important, especially if there are no family members, for the municipality, Primary Care (medical) staff, and the police to become involved. If necessary, people may need to be declared incompetent. A Power of Attorney may need to be enacted. Also, if a person living in a home that does not meet fire and safety codes, this affects an entire community and the authorities must be contacted. Currently, unsafe buildings (plumbing, electricity, poorly heated or insulated homes) may be more than a senior can manage emotionally, physically or financially.

There are many resources available. Many do and will advocate for seniors. The police are becoming more aware of elder abuse and neglect. Primary Care services are beginning to understand that the Privacy Act (FIPPA ) is superseded by the Personal Health Act (PHIPA-- see left sidebar). Sometimes you have to be tough to be kind and loving.

Questions to ask your physician

Ask questions.
Get involved.
You can get support for you or your loved ones. Get a diagnosis. Determine if the issues is organic, or caused by other issues, i.e., polypharmacy, delirium. Talk to your parents and ensure that they are not being underserved by the health care system.

Oncologists, especially, must be accountable to their patients to identify a treatment plan.

Patients, or their caregivers, must ask the hard questions to determine whether the treatment plan will interfere with quality of life.

Essentially, with seniors there are

• statistics that can predict the quality of the treatment,
  
• its impact on the patient and caregivers,
  
• and the probability of its success.
  

A patient and family must ask:

• about treatment options - you need NOT have the treatment if you choose not to.
• how far the disease has progressed (i.e., is it in the lymph nodes?)
• what is the prognosis?
  
• about the impact on the quality of life during treatment
  
• about the impact on the quality of life after treatment
  
• How can I avoid or relieve my symptoms?
• How can I relieve pain? (Agitation or pain? Get a pain management kit if you are at that stage of the cancer.)
  

• If removal of lymph nodes is suggested: what is the impact of lymphedema?
  
• How much time you will gain and at what cost?
  

The impact of radiation can vary widely with patients, but one result of this treatment is the destruction of infection-fighting antibodies. My father fought a urinary tract infection undiagnosed in the emergency ward, and he was sent home incontinent and unable to function with the side effect of delirium.

The need to determine the outside resources available if, for example, the patient is incapacitated by radiation treatment or chemotherapy. In Ontario CCAC will help with this.

Rx
Ask if you are taking the right medications, in the right amounts. Your pharmacist will help you. Ask if the medications are doing you more harm than good.
Ask if they are necessary.
Ask if they are improving the quality of your life, or making it worse.
Ask yourself if the benefits outweigh the side effects.


See also: Questions to Ask the Doctor | Cancer.Net

Ontario Seniors - power of attorney

Our senior population is growing.I believe we are getting healthier, and living longer - but productively. I would hate to speak to some seniors who, in their 90s, complain about their friends all being gone. They have little interest, some, in living a full life. It is important that we focus on helping them participate fully in senior life. Some avail themselves of Meals on Wheels, others have a strong social network, crucial at this stage of life.

With senior's groups, and support groups for various disabilities, we can find help for what ails us, and professionals to ease our concerns. With 442,000 Ontarians over the age of 80 in 2006, many face medical and social issues that will be exacerbated with reduced services advocated by politicians who force us to cut back on tax spending.

At a recent Elder Abuse conference, I heard about other issues and one of the big recommendations is to have Power of Attorney for both financial and health care. These are two separate issues. In order to enact the Power of Attorney (POA), your documents ought to have a clause indicating when it will be in effect. Otherwise, like a Living Will, health care acts will prevail.

Ensure that the document names someone who knows what you want at end-of-life.
Ensure that it specifies the terms and point at which it will take effect, requiring a medical or legal opinion on your diminishing capacity.
Ensure that you avoid arguments over your health care, by specifying a trustworthy individual. Many dysfunctional families become even more so when a failing parent requires intense care. Many families cannot agree on what to do for a sick parent.

If you choose, for your POA, a professional, such as your lawyer, etc., you risk high fees for care that can done by even a distant relative whom you trust. Do your homework, prepare for this eventuality. A Living Will will make your wishes known. Specify if you want a Do Not Resuscitate (DNR) order. Consider your quality of life, rather than the quantity of life.

~~~~~
The statistics are clear.

Statcan, 2006 census for Ontario

0 - 14 = 2.2 million people
15 - 64 = 8.3 million
65 + 1.6 million
total = 12 million Ontarians

~~~~~~~~
June news from Germany

Living will law passed by German Bundestag

Großansicht des Bildes mit der Bildunterschrift:
Millions of Germans have already filled out living wills
It's a dilemma for doctors and relatives. What should be done for patients who can no longer communicate. How much longer should they be kept alive with machines? A new living will law puts patients' wishes first.

Where the women went

One of the thing many have been working towards is regulation of the health care industry. Personal Support workers are the front line workers.
They are the ones that do the caregiving: lifting, changing incontinence products, spoon feeding. For seniors with health concerns: mobility issues, incontinence, they are vulnerable to elder abuse.

Where the Women Went - Video | CBC News: the fifth estate

Source: www.cbc.ca

They are known as "the Newfoundland Ladies" – a mostly underground network of women who, when the fishery industry that their families depended on for generations folded, began to export their services.

It is important that we access health care from reliable, trustworthy, well-trained professionals, not just homemakers, without insurance, who believe themselves experts in caring for your senior family member.

Comments by viewers:

' "Newfoundland ladies"? My experience was far from positive. In the beginning I thought they were the answer to our prayers but as time went by I found that the care provided by many of these individuals far from adequate. The details described by Anne from Winnipeg are very true. I know, I have lived it. Even going over the details of care, over and over again, trying to educate the "ladies" was exhausting. Not because they weren't capable of learning but rather because they are very determined to do things their way and only their way and were not shy about telling you so.'

This is why I truly believe we need to regulate health care workers.

Grooming 101: The beard trim

My late father had a great beard, grown for the Bala Trek. He looked so good with it. Having lost his hair due to the dang radiation treatments, which were contraindicated, I tried to look after what was left.

Brian popped in one morning to visit Dad. We both thought he needed a beard trim. Dad didn’t like anyone touching him anymore and hired outside staff were unable to do this for him. We hired a hairdresser, someone to do foot care, and a massage therapist, it helped keep him more comfortable.

Brian had a wicked cordless electric beard trimmer with an attachment that gathered up the clippings. He took it in to work on Dad, but the batteries died. I needed to give it a go. I was not used to this trimmer, but I did have a hair trimmer I had used on my children’s hair. How hard could this be?
I popped in early to do our evening dinner ritual and routine, trimmer in hand.

Dad spoke as if there were marbles in his mouth. I was looking at his beard. “I think we need to trim it!"

“I don’t know. Pieces, suspended on the--”

“Yeah. Brian did his beard this morning. “

“I had three oh packages of it.” He sounded drugged, which was okay. I still suspected that he was in pain, hence his vocalizations. I was not sure. This inability to converse was one of the symptoms of both dementia and his progressing brain tumour.

I could hear Marjorie across the hall, yelling “Help!” as she did continually, in her state of dementia. “Help me! Help me!” Sometimes she would sing the words.
Dad was lying in his bed. Dad seemed calm as I cleaned him up and prepared to trim his beard.

“Do you have any bacon?”

“Yup,” I say, knowing he means scissors. His inability to retrieve nouns did not faze me anymore. I did not correct him. “I’ll get a towel.”

“You want to know. Not what you left. A get back to get up.” I sat him up, cranking the head of the bed. He gave a big yawn.

“I did not have any relax.”

“Oh, no?”

I started trimming. It was quite long, with his mustache growing into his mouth. I was tickling him, and he moved away. “It’s okay. Sorry, I’m tickling. I’m doing my best, but not giving up my day job, though.” (Oops. Actually, I had.)

I kept working at the beard project and I was relatively successful. It was a bit crooked, but better than it had been. He tended to get so much food into his beard and mustache that it helped if we kept it short. He had always been so meticulous with his appearance. He and Mom had made regular visits to the hairdresser. Dad always got dressed every day in a shirt and pants.
As I worked at his beard, the PSWs came in and asked if I wanted them to get him up. I told them that he would be ready shortly. Off we went to dinner again.
~~~~~~~
This is an excerpt from my book: Living and Dying in Dignity, published in Nov., 2008.

Elder Abuse Workshop

Elder Abuse Prevention

With great delight I attended an interesting morning seminar on Elder Abuse. Hosted by Karen Boyer, and the Muskoka Network Against Elder Abuse.

Presentations by OPP's et. Sgt. Robin Sanders, Det. Con., Leslie Raymond, Jayson Swain (lawyer), Raeann Rideout (onpea.org) enhanced our knowledge.

If you are unsure what this topic entails, read 'T is for Trespass', by Sue Grafton, - a great murder mystery about elder abuse. It will shock you.

Abuse against seniors is a hidden tragedy in which elders are taken advantage of physically, socially, financially or emotionally.

Some seniors living in poverty have adult children who are uninformed of their living situations. In my case, my mother was dishonest about her frail health and her inability to do ADL and IADLs. In my case, my mother denied to her CCAC Case Manager that she needed help. She may have appeared to have been "fine", but she was fighting fatigue, pain and an inability to do her ADLs. She denied to all CCAC workers (Ontario portal: access to health care) that she was ill, fearing, perhaps, incarceration!

In some cases the abuse comes in the form of ignorance and neglect. Many times, especially in Central and Northern Ontario, with fewer resources, a lack of transportation and infrastructure, some are suffering needlessly.

This climate is hard on our homes, and some cannot afford to maintain them. Some seniors are caring for seniors. I know that in education and health care, we are obliged to report cases of child abuse and/or neglect. These kids cannot speak up for themselves. Unfortunately, those who volunteer are not aware of proper protocols, nor the signs, in protecting seniors, sometimes from themselves.

Some frail seniors slide into a pattern of self-neglect that results in terrible living conditions. Garbage collects, appliances fail, mold grows, dementia causes them to hoard things. It is only by educating health care workers, the police, municipality and neighbours, to work together to help these seniors find adequate housing and living conditions.

In addition, neighbours, while trying to do seniors favours, end up enabling them to remain in their homes in dangerous situations, covering up their extreme needs for in-home support. My parents, both ill, required help with groceries, their finances, getting mail, doing household chores, and they were very frail. They were living in a dangerous situation in that I did not know how ill they were until I moved here and mom died 6 weeks later. In this case, it might have looked like they were being neglected, but despite nearly daily phone calls, many sons and daughters remain uninformed about issues. Adult children must be informed. PHIPA demands it.

There are places to turn.

There are people who will help. The OPP have officers who specialize in working with communities: Prevention of Elder Abuse, legal aid clinics who will help draft wills, Power of Attorney, Advance Care Planning.

Muskoka Network Against Elder Abuse
705-646-7677
caregive @ muskoka.com

Lake Country Community Legal Clinic
705-645-6607
Long-Term Care Action Line
1-866-434-0144

PPT - Leslie Craig - OPP[PDF] - View as HTML

Ontario Provincial Police. Crime Prevention. “The anticipation, recognition and appraisal of a crime risk"

OPP Tip Sheet: Abuse of Older Adults (PDF)

Ontario Network for the Prevention of Elder Abuse
416-916-6748, admin @ onpea.org, www.onpea.org

Long-Term Care & data

Scientific data and seniors seem to be absent from media these days. Even lobby groups, who used to be careful about their claims (I thought!), are now touting great doom and gloom pronouncements.

I belong to the Canadian Association of Retired Persons (CARP), which is a sister organisation of AARP, the Americans. What concerns me, is that since the medical care is vastly different between the US and Canada (due to our health care system, gay marriage laws, etc.), many studies are cited that do not apply to Canada, but end up fear mongering and taking away from the real issues.

CARP - A New Vision of Aging for Canada

Canada's Association for the 50Plus, a New Vision of Aging for Canada.
www.carp.ca/

Why does it have to be new? What is wrong with the 'old'? We always wanted to live long, healthy lives in dignity and respect.

CARP purports to present information about Advocacy, Benefits, and Community. But this is just a media outlet, that seeks advertising dollars from all sorts of places, and cannot claim to represent all seniors, only the ones that can afford to belong. They lobby for pension reform, on behalf of all, I suppose, without a voice from those without pensions.

A CARP Poll Uncovers High Rate of Elder Abuse:
Those With Caregivers Most At Risk

"A CARP poll of members has revealed that almost 1-in-10 older Canadians have suffered from elder abuse. Based on our sample which is primarily 55 years and older, a group which makes up 8.7 million people in Canada, 9% would represent 783,000 older Canadians. Abuse manifests itself as neglect, physical, financial or sexual abuse, and CARP members report all of these." Read more

Who did they study? Where is the data from? Is this a scientific study, or did it arise form the little on-line form I filled in last week? When I saw it, it said:

In their study: "respondents reported a pattern that is mirrored in the existing literature":

Psychological abuse (swearing, cursing) 13%
Financial abuse (fraud, theft) 4%
Sexual abuse (touching, language) 2%
Physical abuse (beatings, assault) 1%
Neglect 1%

Yet their newsletter stated:

as many as 783,000 could be affected.

I must admit that I have heard many seniors giving as good as they get - or vice versa. Once dementia hit my dad's brain, he was violent, angry and physical. He participated in a fist fight with another man in a wheelchair when they collided.

I really question putting all our faith in this kind of lobbying.

Instead of having lobby groups, primarily concerned with saving tax dollars, increasing pensions, and making money, jumping onto this band wagon, why don't they concentrate on what they know and do best? I attended a Muskoka workshop on Elder abuse, and I know that there are non-profit agencies whose work is excellent.

There are many professional health care organisations dedicated to this cause. It is the latest 'sexy' issue, but one that must not be over blown to the detriment of other issues such as regulation of health care workers, increased staffing, patient advocates and some of the other issues for which I advocate in my book.

It is wonderful that people in our community are celebrated, rather than fear-mongering with false data - like this man:

Eighty years young and still doing business in Muskoka

June 3, 2009 - by Kerri MacDonald

"Ed Seagram will not sit down. Wearing a light brown corduroy jacket and carrying a leather briefcase, Seagram’s here on business."

Keep up the good work, Kerri. Laud our active seniors. We have a strong volunteer community in this province, see My Muskoka post on this celebration.

Long-Term Care & fear mongering

Previously, I have blogged about the difference between a lobby group (made up of paid members), and our Transfer Payment Agencies (with Ministry of health standards and expectations), and groups dedicated to particular causes (e.g., Elder Abuse). I have discussed the differences between for-profit and non-profitcare health care, retirement homes, and LTC (formerly 'nursing homes') in Canada. Many more family members are hiring through for-profit agencies, and caregivers have different standards than in government, or for-profit LTC homes.

CARP is now using US data to raise a flag. Firstly, Primary Care (health care by professionals) is different in the US than in Canada - as I have to reiterate. In addition, our values are vastly different. Gay marriage is legal here. We must get down to the roots of LTC issues: staffing, regulation of PSW staff and rural-urban disparities. I am shocked that CARP would feature this in their newsletter, it claims a parallel that cannot exist.

More work to be done - Challenges in Long Term Care

"An article that appeared in the NY Times in 2007 reported that elderly gay people living in nursing homes or assisted-living centers encountered disrespect or mistreatment. Such discrimination has even lead to suicide, which occurred when an elderly gay individual was removed from his floor and placed in a room with patients suffering from dementia or severe disabilities, in order to placate the protests of other residents"

Secondly, if such sexism does exist, then we need better-trained staff members who can do advocacy work on behalf of gay residents of LTC. I know that my late parents were somewhat conservative, especially in their later years, but there are many seniors in Ontario nursing homes who have an open-minded spirit of compassion and respect for one another.

The assistive living centres I know have anti-discrimination policies and high standards for levels of care, including discrimination. Despite most of our LTC centres being for-profit, they still must abide by Canadian regulations. What a red herring to be citing such a story in a Canadian newsletter. I am shocked.

Mosg of the issues in LTC and retirement homes can be resolved with better regulation of PSWs, patient advocates, and more nurses in rural areas, amongst other things. Let's focus on the real issues.

New sites for Canadian seniors and families

There is a difference between Retirement Homes and Long-Term Care. The former is a for-profit residence in which a senior is in a landlord-tenant relationship. Long-Term Care has a higher level of nursing care, and more staffing. It is subsidized by the government, and is governed by the Ministry of Health and Long-Term Care Act.

I received an interesting e-mail from Comfortlife.ca, a site with information on retirement homes:

Hi Jennifer,

Thanks for writing a great blog about seniors' issues. A lot of your posts are uniquely rich. We write about some of the same issues at our site, and I would like to suggest that a link to our site would fit nicely under your roll of SELECT RESOURCES.

Comfortlife.ca features a wealth of materials for seniors and their families to help them decide on retirement home care, These include the following.

• Nearly 100 articles on senior care and retirement homes from five years of Comfort Life magazine (searchable database)
• A complete navigation section on finding the right retirement home
• An advanced search engine searchable by facility amenities, location and much more:
• A digital version of the latest issue of our magazine:

The article database includes numerous in-depth, original articles we have accumulated over the years, on subjects related to seniors and senior care. These include:

• A feature on one photographer's attempt to expose the need for improvements in home health care
• A profile of senior romantics
• Numerous profiles of 'amazing seniors' such as Dr. Emil Andersen
• A feature on a potential treatment for Alzheimer's Disease

We've also written about concerns over seniors and driving.
Jim Huinink
Website Managing Editor
~~~~~~~

Such sites are springing up all over. I have written previously about checking out that a site has value, and trusting what one reads. Check out the sponsors, and ensure that there is no conflict of interest. Ensure that the writers are accredited and have an education.

Health care professionals, as in other professions

rely on peer-reviewed, ethical, scientific journals, for current data to set standards, guide practices, and develop a dependable, reliable, valid and research-based treatment standards. These are the standards that should guide us. Conflict of interest is a risky business, as some pharmaceuticals seek to create infomercials that mislead those who are suffering.

Another new site, Losing Our Parents, is a non-profit site where folks can write about the pain of caring for and/or losing a parent. The research certainly indicates the therapeutic benefits of this kind of writing.

dying with dignity

There is a difference between being hopeful, and having hope; feeling weak (physically,spiritually, socially or emotionally), and feeling hopeless. You can accept your situation and still have hope.

What you feel is not wrong. What you feel ...simply is. Acknowledge your feelings.

Remember, it is not your job to make others feel anything, you need not perform for them, behave a certain way, or feel certain things, but it does help you to talk about what you feel: honestly, and others to understand where you are in your journey. Give yourself permission to be yourself.

I wrote about my journey to help others. There are many lessons. Life is a journey and a classroom. I share my tales of the palliative care, since I lived through it.

This is the time to reach out. What you accept from others (time, energy, support) helps them, too. You should expect to make certain preparations. Forewarned is forearmed. Everyone's journey is different, but there are lessons and things to make the journey easier for you, family and friends.

Remember, you are a beautiful person. "God don't make no junk!"

Check out:

National Hospice Organization – www.nho.org/ - The National Hospice Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.

Care for Dying Patients With Primary Malignant Brain Tumor —Respecting Dignity—PDF (103K) Kunihiko WATANABE1) and Rod MACLEOD2) 1) Division of Neurosurgery, Tochigi Cancer Center 2) Department of General Practice (Palliative Care), University of Otago, Dunedin School of Medicine (Received February 8, 2005) (Accepted June 15, 2005) Abstract Patients with primary malignant brain tumor experience deterioration of multi-focal neurological deficits such as hemiparesis, aphasia, visual field defects, dysphagia, and disturbance of recent memory at the advanced stage of disease. With these advancing neurological deficits, many patients will inevitably prepare for death and may experience psychological and spiritual distress. Active listening is an important skill to explore the fears of patients with a terminal illness but in the advanced stage of a primary brain tumor, patients usually have great difficulty with verbal expression. Even if patients do not suffer from complete expressive aphasia, they often have difficulty verbalizing their thoughts and feelings. Sadly, disturbance of vocal expression is a common accompaniment of this pathology. Unless the pathophysiology is understood, an observer may fail to comprehend the patient's non-verbal communication. Seeking to understand these issues is a prerequisite of the preservation of dignity and provision of ethical care for such patients. Cambridge Quarterly of Healthcare Ethics (2003), 12:3:322-325 Cambridge University Press Copyright © 2003 Cambridge University Press doi:10.1017/S096318010312316X

LTC Bill of Rights

In doing research for my book, I found the Ontario Bill of Rights for those living in Long-Term Care (LTC).

Every Resident — Bill of Rights for people who live in Ontario long-term care homes (PDF 1642KB) September 2008
An explanation of each right in the Bill of Rights for residents of nursing homes, and municipal and charitable homes for the aged in Ontario. It lists places to turn to for help, including the Advocacy Centre for the Elderly (ACE), and the service area offices of the Ontario Ministry of Health and Long-Term Care.










In visiting a friend, I turned up a couple of times and found that the door had a sign saying that due to an influenza outbreak, they were not allowing visitors. I also volunteer for Hospice, and these visitors are similarly turned away by a notification on the door.

In contacting the Ministry of Health and LTC, I was informed that this is illegal. The Bill of Rights [A1. 11(9)] states:



This is a right, not a privilege. The only time visitors can be barred, and an institution can officially restrict visitors from entering a LTC facility, is at the point when the Ministry of Health

• sends a Health Inspector,
• orders are signed,
• and the building is officially quarantined.

In this case, the signed order is placed on the door. It cannot be a letter from the Administration. LTC homes are governed by Ontario Ministry of Health and Long-Term Care
[ Previously, Bill 140 - 5 May, 2009 ... On June 4, 2007, the Long-Term Care Homes Act, 2007 (LTCHA) received Royal Assent.]
Quarantine can occur when there is a risk of infection, (e.g., MRSAs, or other Superbugs, or an infestation of scabies*). But it is a process that requires an order by a Medical Officer from the Health Unit. A Public Health Officer may declare that with a flu outbreak, visitors should be monitored, swabs may be taken and visitors need to be managed. But visitors cannot be denied entry into a facility.

If a LTC facility has an outbreak of influenza, it is up to the facility to provide extreme containment measures, such as masks, and handwashing stations, and visitors my be only restricted to the resident's room. Group activities may be halted - some homes have excellent organized programs with volunteers and/or children and pets visiting. This is a different order of activity and only makes sense to limit such groups.

If you think you are being restricted from visiting a loved one, you can approach the Administration and cite this Ministry standard. Every resident has the right to communicate and consult visitors in private.

What strikes me is that we have no idea how many LTC homes and retirement homes have repeated infections of this magnitude. Homes that are quarantined are tracked, but this illegal closing, that violates the rights of residents and their families, is not monitored since it is an impromptu, home-specific decision.

Some homes, when a resident is taken out for a dinner or special occasion, tell the family that the resident will not be readmitted due to the flu but this, too, is illegal. Know your rights.

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*Scabies, also known as the itch, is a contagious ectoparasite skin infection characterized by superficial burrows and intense pruritus (itching). It is identifiable by a rash, and itching expecially difficult for failing seniors who scratch until the sores bleed.

Find out more about :

• Residents' rights
• The ministry's regular inspections and reviews
• How the government enforces its standards
• What happens when you make a complaint
• How to make a complaint
• LTC Homes Reports

Senior's publications by Community Legal Education Ontario (CLEO):

Elder Abuse: The Hidden Crime (PDF 409KB)
October 2008
This booklet describes the different types of elder abuse, the signs and symptoms of elder abuse, why it happens and why it is seldom reported. It also includes information on how to get help and support, and lists resources available in communities across Ontario.


Every Resident — Bill of Rights for people who live in Ontario long-term care homes (PDF 1642KB)
September 2008
An explanation of each right in the Bill of Rights for residents of nursing homes, and municipal and charitable homes for the aged in Ontario. It lists places to turn to for help, including the Advocacy Centre for the Elderly (ACE), and the service area offices of the Ontario Ministry of Health and Long-Term Care.

CLEO Publications Online
Select by Subject:
Criminal Family Health & Disability Immigration & Refugee Landlord & Tenant Legal Services Seniors Social Assistance Work & Employment Insurance Workers' Compensation Youth Justice Other

Palliative Care Conference

I attended the NSM LHIN Palliative Care conference in Orillia, May, 2009.


Reference
Seow, H. (2008). The use of end-of-life homecare services in Ontario, Canada: Is it associated with using fewer acute care services? (hsienseow@gmail.com) This research was presented at the NSM LHIN Palliative Care conference in Orillia, March 25, 2009. Hsien Seow, Ph.D, is working at McMaster, in the oncology department.

Another great event in Muskoka was the opening of a 3rd Palliative Care room in SMMH.

Senior Drivers in the news

I have posted previously about the importance of early identification of symptoms, such as dementia. In this way we can ensure the safety of both seniors, and society. Dementia, while it cannot be reversed, we can pay attention to symptoms and help alleviate symptoms.

With increased limitations to mobility and access to sensory information, senior drivers must be vigilant, and solutions, such as physiotherapy, can help increase their ability to drive safely.
As I wrote previously in, Senior Drivers in Ontario,
"Transport Canada warns of those in intersections being the most at risk. Current stats, in the recent Ontario move to more severely curtail teen drivers, reveals statistics that demonstrate seniors are more risky than newbie teen drivers."



The news reports are clear...

Tests for over-75 drivers backed
The Republican - MassLive.com - Springfield,MA,USA
The action comes after a spate of fatal accidents recently involving elderly drivers in Massachusetts.

Driving Debate: Elderly hit-and-run case raises question 'How old ...
WHO-TV - Des Moines,IA,USA
Last year, 42 people were killed in a crash involving a senior citizen. Now many people asking what steps are being taken to ensure elderly drivers are fit

Senior drivers get bad rap.
19 Jul 2007 ... Senior drivers are nearly seven times more likely than younger drivers to be killed in a two-car accident.

Man, 76, killed following fiery crash near White City, SK
SASKATCHEWAN - Emergency crews were called to the intersection of the Trans-Canada Highway and Highway 48 east of Regina at 5:14 p.m. after learning about a two-vehicle collision that had just occurred there between a truck and a car. [24 MAY 09]

Old Drivers[PDF]
Senior Drivers and Highway Design. HUMAN FACTORS NORTH INC. Older drivers were 1.65 times more likely to be in an accident turning left with no ...

Accidents involving senior drivers climb in Ottawa
Ottawa police say accidents involving senior drivers continue to rise each year and it's time for family and relatives to be more aware of problems ...

Mother and baby injured as car crashes into Danvers Wal-Mart
Boston Globe - United States
Senior citizens should undergo drivers' tests. That is not discriminatory as organizations such as AARP falsely claim. It is common sense, as too many of ...

Police: Elderly Driver Loses Control, Injures 8 - Boston News ...

3 Jun 2009 ... Eight people are injured when a car goes out of control in Plymouth. ... Crowd Had Gathered To See Vietnam Memorial ... The driver of the car was a 73-year-old woman who was dropping her ... A 93-year-old man drove his car into a Wal-Mart in Danvers, Mass., Tuesday, seriously injuring a young girl.

And an excellent article by a physician:

PHYSICIAN FOCUS: Assessing the older driver
Posted Jul 28, 2009 @ 05:47 PM, By Dr. Janet L. Jankowiak

"In 2004, I wrote about issues surrounding older drivers, as accidents caused by elderly motorists resulting in multiple deaths focused nationwide attention on the subject.

The facts are clear about elderly drivers.

Federal Highway Administration data

• drivers 75 years and older have higher rates of fatal motor vehicle crashes than any other age group except teenagers.
  

Insurance Institute for Highway Safety

• drivers 85 and older have nearly twice the number of fatal accidents as those 16 to 19.

Collisions and traffic violations in the elderly population reflect:

• errors of inattention
• failure to yield
• difficulty maneuvering
• driving too slowly
• Left-hand turns are dangerous.

More safety tips for senior drivers
Boston Globe - Boston,MA,USA
When choosing a car, elderly drivers should pick smaller vehicles that ... AARP's entire eight-hour senior driving course is available online for review. ...

Elderly motorists may be put to test
Boston Herald - Boston,MA,USA
By Hillary Chabot and Edward Mason Elderly drivers over age 75 could face ... the safety of our senior drivers as well as other motorists and pedestrians. ...