Sunday, January 30, 2011

Evidence-based health care

With all the evidence-based care the CMAJ publishes (at US$20, as a matter of fact). Peer-reviewed, researched articles that make a difference. As a teacher, I made it a point to read articles on a regular basis. I attended conferences, workshops, and ensured that I read or heard all the evidence. We do more research in both education and the field of healthcare, than in many parts of the world. We ignore more of it, as well.

 We know that great social services work includes empathy, whether we be educators or healthcare professionals or volunteers. We understand that when a patient cannot understand our words, they understand our affect. When I would visit my father, his tumour had wreaked havoc with his communication skills. Sometimes it was expressive language, sometimes it was receptive language
It means the type of bedside care that a patient deserves. It isn't always more treatment, more tests, more pain. Many of us fear the pain of dying, rather than the dying itself. It can be done with dignity with a wise and caring support person. This is why I volunteer with Dignity House Hospice.

To learn the empathic response is not difficult.
It isn't the physician who tells us that facing your pain lets you know you are alive.
It isn't the physician that complains to the hospice volunteer sitting bedside that 'she just won't die', about the client in a coma on the bed.
It isn't the physician who spends time in diagnosis, and a few moments to state, "Yes, bad news. You have cancer," and leaves the room.
It isn't the physician who marched into a client's room, where I was bedside giving respite to the daughter, and said to me, "She just won't die!" about the woman in a coma between us.

The empathic doctor recognizes your pain, emotional and physical. They present a treatment plan, choices, option for care. They give you resources to assist you in making informed decisions about your care: side effect from treatment, longevity with or timelines without treatment. They recognize that you are a human being with dignity and humanity.


Empathic responses in clinical practice: Intuition or tuition?
January 24, 2011
Many physicians find it difficult to respond to the emotions their patients express, report Buckman and colleagues. Yet an empathic response can improve patient satisfaction and adherence to treatment as well as result in fewer malpractice complaints. (CMAJ, Buckman et al. CMAJ.2011; 0: cmaj.090113v1-cmaj.09011)


More People Choosing Hospice at Life's End

With focus on comfort, people often feel more in control, with less distress

By Dennis Thompson
HealthDay Reporter
FRIDAY, Jan. 28 (HealthDay News) -- People facing a fatal illness often find their fears and pain exacerbated by lack of control -- with doctors poking and prodding and treating and testing even as the end grows near.


A person's hospice team develops a care plan that helps control pain and symptoms. The team also will:
  • Help the patient and family members deal with the emotional and spiritual aspects of dying.
  • Equip the patient's home with needed medical supplies and equipment.
  • Coach family members on caring for the person.
  • Provide quick-response care on an around-the-clock basis when pain or symptoms flare up.
  • Make bereavement care available to the patient's surviving family and friends.
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Saturday, January 29, 2011

Mentally ill inmates a sign of the future

Victim of 'Aging at Home' philosophy
The demographics make these conditions horrible. Canada has had several cases of suicides in our penitentiaries. It is, I believe, a tip of the proverbial iceberg. While suicide is the second highest cause of death for young people, accidents being the first (18 - 24), mental health issues fall under the radar for seniors. Depression, especially caregiver depression hits many a family.

Seniors housebound due to physical infirmities, transportation (or the lack thereof), sleep disorders, and caregiving responsibilities, can lead to mental and physical health issues. It is important that seniors receive help. Sometimes Primary Care physicians pooh-pooh new health issues, blaming them on chronic care problems, and deny a senior the proper healthcare, or medications to improve their lives. The myths of pain management continues with older doctors who have not kept up with current practices.

My father remained undiagnosed with a urinary tract infection (due to radiation treatments - something quite predictable) because his dementia was confused with his delirium.

Mental health issues are complex and increasing. Hospitals are unable to manage frail seniors who have dementia. And dementia is an undiagnosed issue for many. Make sure you know the difference between dementia and delirium.

Read about this woman with chronic health and obesity issues.


From Hospital to Home:


The Transitioning of Alternate Level of Care and Long-stay Mental Health Clients


Psychiatric ALC (Alternate Level of Care) days and long-stay days (defined here as days
exceeding three months for a single hospitalization) consume a significant portion of all Ontario
inpatient resources, representing 51% of all Ontario ALC/long-stay days. Further, individuals
who have 90 days or more designated as ALC in acute care settings, or very long stays in tertiary
facilities (i.e., six months or longer), have very complex conditions and needs. They are more
likely to have schizophrenia or psychotic-spectrum illnesses, developmental disorders in addition
to mental disorders (i.e., dual diagnosis), and co-occurring physical illnesses. The majority
exhibit problematic behaviours and a large proportion have legal involvement.



Prisons grappling with increase in mentally ill female inmates (- Jan. 29, 2011, Globe and Mail)

A wave of mentally ill women is flooding into the Canadian penitentiary system, sparking calls for reform and the creation of treatment facilities that already exist for male offenders. Across the country, prisons are grappling with the problem of a sharp increase in mentally impaired inmates. But the issue is particularly acute with women.

Why Canada's prisons can't cope with flood of mentally ill inmates

What do you think will happen when more people move into their senior years? More people living in unsanitary conditions. Those aging at home without poor quality of lives, hoarders, and those unable to care for themselves. 
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Saturday, January 22, 2011

USA reform: H.R. 3962 Affordable Healthcare - the myths abound

I'm afraid that I agree with President Obama's changes to healthcare.
I live in Canada, and our system is working pretty well. While taxpayers insist on tax cuts, we are guaranteed healthcare.
I publish a regular Ontario Seniors healthcare blog, and my American readers asked I explain our system.
It works.

Canadian Health Care System - part 1

I was asked to write about our system in Canada, as there is much misinformation in American news about our weird ways.

Seniors and Canadian Health Care - part 2

This is a follow-up to my post on our Canadian system. Seniors, and people on welfare have extra services. In addition to free medical services, my parents, for example, would only be required to pay $2.00 for new prescriptions filled.
We truly believe that it is our responsibility to care for one another.
I do not believe that a judge is the right person to comment on healthcare reform. He is well able to purchase services. 

As is the way, lobbyists are sending around email designed to garner an uproar. In fact, I like it. I believe that North America is not the place where people must buy healthcare services. Both Canada, and the UK depend upon universal healthcare. It only seems right. Why not help your fellow human, if they are unable to purchase healthcare services. The US system, with insurance providers that use and abuse their clients, deny reimbursement, and drop those with 'pre-existing conditions'.

For-profit hospitals cannot be for the good. Just as we've seen elder abuse in for-profit long-term care homes, we cannot trust that those interested in profits can manage the health of those most at risk.
Many are circulating false information about this bill.
In fact, the final bill is called 3962, here is an updated link, and the circulating email is based on the original bill (3200).

This is the current email circulating around the Internet...my comments (my resume), as a senior healthcare advocate, interjected.

YOU ARE NOT GOING TO LIKE THIS: ObamaCare

THE CARE BILL HB3200

Honorable David Kithil
                   Marble Falls,  Texas

JUDGE KITHIL wrote:
** Page 50/section 152:  The bill will provide insurance to all non-U.S. residents, even if they are here illegally. 



If you're going to hire migrant workers, shouldn't a country provide healthcare for them? Otherwise, pay the going rate for American workers, and include healthcare. Cheap labour is not a value to which I uphold, and outsourcing is a means by which big box stores, like Cheap-Mart, get away with providing goods, poorly made, undercut, that put a family-owned business out of business.

** Page 241 and 253:  Doctors will all be paid the same regardless of specialty, and the government will set all doctors' fees. 


Perhaps someone can explain why Geriatric Specialists are scarce and the most underpaid, yet most important of specialities. Seniors have complicated comorbidities and complications. Many have more than one chronic condition, as well as facing the ravages of old age.

** Page 272. section 1145: Cancer hospitals will ration care according to the patient's age. 

Not quite what it says. It says that if one hospital has much higher expenditures than another, then its books will be examined.


** Page 317 and 321: The government will impose a prohibition on hospital expansion; however, communities may petition for an exception. 

If communities cannot have some input, who should? I believe in local decision-making. Local taxpayers are the best ones to lobby local politicians to determine needs and to make said politicians accountable.



** Page 425, line 4-12: The government mandates advance-care planning consultations.  Those on Social Security will be required to attend an "end-of-life planning" seminar every five years. (Death counseling..) 

Hospice Palliative Care practices are sadly lacking in North America. Many myths abound, with some physicians reluctant to give adequate pain killers. In this day and age no one should be in pain. Doctors should be writing up Pain Management Kits for all palliative clients, for family members to keep on hand in a 2:30 a.m. emergency. Many do not do so. This type of planning is crucial in order for palliative clients to be kept comfortable and safe in their own homes, and to avoid emergency trips to hospital.


** Page 429,  line 13-25:  The government will specify which doctors can write an end-of-life order. 
Not true:
The new rule creates no death panels. It is not a government endorsement of euthanasia. And, no, it doesn’t paint a target on grandma’s back. It’s just sound, practical health care policy. (Despite Sarah Palin's lobbying to this effect...
Who is publicly commenting on healthcare reform?

Organizations Opposing H.R.3962


Organizations Supporting H.R.3962

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Thursday, January 20, 2011

Case Studies #15/16/17/18


15.    An 89 year old man, in a rural town, has prostate cancer and is having chemo treatments every 3 weeks.  The patient has battled cancer for 12 years, having chemo every summer and fall for the last 3 years.  The doctor now also suspects early Alzheimer’s disease. He was a paratrooper in WW II.  He loves music, and plays the saxophone, the clarinet, guitar and some piano.  He also loves sports.   He and his wife feel this is the end stretch of his illness. He is unable to choose the sports stations he used to love. He is losing the ability to manage the TV clicker.

His wife works four days a week in another town, from 9 a.m. to 3 p.m.  and must leave him alone for these long periods of time. They need the money.

16.    A 71 year old man lives a few minutes outside of a small town in a retirement home.  He has had a mini stroke, has COPD, type 2 diabetes, an enlarged prostate and Alzheimer’s disease.  His wife is very lonely, and in need of support.  He is up to the bathroom an average of 5 times per night. His wife is tired, and stressed. She sleeps over in the home as much as she can, as a retirement home need not provide the time of supervision he requires. She has arrived and found him alone and fallen to the floor. The waiting time for LTC is estimated to be nine months.

17.    A 55 year old husband lives with his family in a rural small town.  A year ago he had brain surgery for grand mal epileptic seizures. On his good days, he can send his step-children off to school. He cannot be left alone on his bad days. On his bad days he must have the kids stay home to watch him. His wife must work to pay the bills. She has no one to care for him when he knows he is going to have a petit mal seizure.

18. A smoker.  He has a cat, two dogs.  His health concern is MS and he is now in a wheelchair.  He was a teacher, who quietly left his career, a respected and well-loved elementary teacher. His episodes gradually lowered has physical capabilities, meaning he could no longer write computer-generated report cards. He is now visually impaired.  He and his wife moved to an adult -only condo, but he needs more help than his petite wife can provide. An application is being made to long term care.  His is a social worker, and is away up to 12 hours per day.  His days are long and are alone.  He is isolated, with little companionship. He eschewed contact with former colleagues, and has few supports.



These are the stories of seniors who need support.

Related Links:

Community, not technology, is what people with health issues need.
'Elderly parents sue adult children for support'
This is a law that needs changing.
Where does responsibility lie? Many seniors eschew help. And, if they have the money to sue their children, surely they have the money to purchase home care services. Some seniors have spent their lives abusing their children, dealing with addictions or mental health issues, and may have been absentee parents for one reason or another. These seniors call their adult children at all hours of the night or day. If you come to their rescue when they ought to be in long-term care, you enable them to live alone and at risk.

I believe that adults choose to have children, not the reverse. You bring someone into the world, you have a responsibility to care for them. Once they are adults you hope you have given them roots and wings.

I've taught kids whose mothers were drug abusers, and virtually abandoned them. I cannot see, with these kids ending up in foster care, or living with their grandparents, that they owe anyone anything. In fact, we owe them the reverse. I've taught kids who were desperate for love from their parents, but their parents were in jail, or unable and unwilling to give them care.
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Sunday, January 16, 2011

Hospitalization for seniors

If you, or someone you love, is hospitalized you know you are at risk for many complications. The first one is, of course, Superbugs. However, if an elderly relative is put into hospital there are many things you can do to prevent some complications. There are new studies to demonstrate that post-ICU care is crucial.

You are at risk for a number of issues once hospitalized. These demand that family members get involved and be proactive as a friend or caregiver. You want to reduce your stress, improve and maintain physical and cognitive function, reduce falls, and prevent admission to LTC while having improved quality of life. Placement in a hospital can lead to poor nutrition, dehydration, immobilzation, sleep deprivation and unnecessary Rx. As we age, there are changes in our muscles, joints tighten up, blood pressure, lung function, bone strength, bladder control, our skin declines, poor nutrition is a risk as our appetite decreases, fractures immobilize us and lowered cognition is a possibility.

The Aging Process
Be vigilant about all bodily functions: as we age we naturally have loss in muscle mass, strength and energy. High or low blood pressure is a predictable risk as we age. Also, our rib cages become more stiff, with reduced oxygen in our blood, complicated by dizziness, osteoporosis - decreased bone strength, poor nutrition, and an inability to get to the bathroom, hospital rest can increase stress and exacerbate the normal aging process. As we age or skin gets thinned, we have a poorer blood supply and a slower rate of skin cell replacement. This results in skin ulcers and infections for those who are "bed ridden".

Be Present
Hospitals are place for those with acute illnesses. They do not deal well with those who are frail. Firstly, expect that you will be of benefit to them if you are present at their bed-side. There is much to do. It is important to advocate for them; record treatment plans, medications, test results. Be proactive. As Why, How often and How much? With 3 new medications, seniors are at high risk for complications. About 50% of those with dementia are at home. Of these, 2/3 of them remain undiagnosed.
It is estimated that dementia is present in:

* 23% of seniors aged 85-89
* 40% of seniors aged 90-94
* 55% of seniors aged 95-99
* 85% of seniors aged 100-106

Liquids and food
Make sure that they are getting enough fluids and food.
Ensure that they have all their senses available and provide them with glasses and hearing aids.
Look at their medications. Determine is they are a) getting required Rx, i.e., cholesterol, blood pressure. When you first go in to the hospital bring along all of the medications.
b) On the other hand, check that they are not unduly restrained, or overmedicated.

Mobility
Next, make sure that they are kept mobile. (See Get Seniors Moving to Prevent Falls)
If they cannot walk, they can have physiotherapy, massage. Restraints should only be used if necessary. (They were in my Dad's case. He fell out of his wheelchair all the time.) With insufficient physio, restraints, bladder catheters and bed rest we risk impaired mobility, which may lead to falls, difficulty with stair climbing.

Activities
Keep minds active by playing cards, reading aloud, looking at photo albums, playing board games. Create a memory album. Take in an iPod with family photos, favourite music, a stuffed animal. My father always clutched his in LTC.

Prevention of chronic disease
Of course, prevent hospitalization by eating well, staying active, exercising mind, body & spirit, and being informed about health risk factors through screening and immunizations. Well-known complications in patients who require ICU care include myocardial infarction, pneumonia, and stroke.

Be Aware
Be vigilant and take note of new symptoms: confusion, falls, loss of independence, incontinence, depression. Create a visitors list, ask for help from CCAC, Red Cross, respite care from non-profits institutions. Look for generalized weakness or fatigue, which mandates assessment for anemia, nutritional deficits, sleep disturbance, muscular deconditioning, medication adverse effects, and/or neurologic impairment.

If patients have a history of delirium, then prolonged sedation, mechanical ventilation, and acute respiratory distress syndrome, they are at risk psychologically: comorbidities may include posttraumatic stress disorder (PTSD), anxiety disorder, and depression. Families and caregivers may also have depression and anxiety, as I well know.

Discharge
Do not permit them to be discharged if you cannot look after them, or if you have no plan for Home Care through CCAC. Ask for a referral to a geriatrician for a geriatric assessment before you take them home. A comprehensive assessment can identify and assess medical, psychological, environmental and social factors that contribute to frailty, dementia and delirium. Nutritional deficiency, lack of sunlight, and use of corticosteroids can cause bone demineralization and vitamin D deficiency, so be vigilant.

Finally, ensure that you know the difference between dementia and delirium. The latter is due to drug interactions, or infections, etc., and can be cured, but dementia can have serious implications for home care. Dad was discharged from emergency with delirium and became incontinent. He had a bladder infection from his radiation treatments and was in a bad way. Totally curable, but undiagnosed. It broke my heart.
See also: Before you dial 911
~~~~~~~~~~~~~~~~
Resources
  1. Prescription for Excellence: How Innovation is saving Canada’s Health Care System, by Michael Rachlis MD, Harper Collins 2004.
  2. Sharon K. Inouye et al. Delirium: A symptom of how hospital care is failing older persons and a window of opportunity to improve quality of hospital care. Am J Med 1999;106:565.
  3. John A. Rizzo et al. Multicomponent targeted intervention to prevent delirium in hospitalized older patients: What is the economic value? Medical Care 2001;39:740.
  4. Désirée Lie, MD, MSEd ,Outpatient Management of the Post-ICU Patient Reviewed
  5. Get Seniors Moving to Prevent Falls
  6. Primary source: Journal of the American Geriatrics Society
    Kenny RAM, et al "Summary of the updated American Geriatrics Society/British Geriatrics Society Clinical practice guideline for prevention of falls in older persons" J Am Geriatr Soc 2010; DOI:10.1111/j.1532-5415.2010.03234.x. 
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Saturday, January 15, 2011

Prepare for H3N2 Seasonal Flu & Whooping Cough (pertussis)

Prepare for H3N2 Seasonal Flu!


The H1N1 pandemic that struck Canada and much of the rest of the world in 2009 seems increasingly like a distant memory.  Now, a new strain of flu has begun to hit parts of Canada with a vengeance.  Yet here's the thing.  Parts of Canada are in the grip of a type of seasonal flu that for some is every bit as serious as H1N1.

It is not too late to get a flu shot. It takes about two weeks to work.

Not only that, but ...


Pertussis Outbreaks Costly for Local Health Depts
A pertussis outbreak saps resources -- both time and money -- from local health departments, according to an analysis of a school-based outbreak among 26 people in Omaha, Neb.


Although introduction of a vaccine dramatically reduced cases of pertussis -- bottoming out at 1,010 in 1976 -- the highly infectious and potentially deadly respiratory infection has made a partial comeback, peaking at 25,827 cases in 2004. From 2002 to 2006, there was an average of 17 deaths per year.

The CDC continues to recommend a single Tdap dose for adolescents ages 11 through 18 who have completed the recommended childhood diphtheria, tetanus toxoids, and pertussis/diphtheria, tetanus toxoids, and acellular pertussis (DTP/DTaP) vaccination series -- as well as for adults ages 19 through 64.
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Regulate PSWs - provide consistent, individual care

An Elder Abuse workshop in Muskoka
The Ombudsman's report continue to highlight issues in Ontario long-term care (LTC) homes.
Read the report (PDF) I think it boils down to for-profits delivering services, trying to save money, and services delivered by workers who are not monitored, regulated or consistently trained.

Here is the key issue:
The standards being used to monitor long-term care homes were inconsistently interpreted and applied.  With 450 different criteria to check, ranging from minor to serious, the Ministry’s compliance staff were often overwhelmed, the Ombudsman found.  Largely due to inadequate and inconsistent training of staff, serious deficiencies tended to be lumped in with less serious ones and follow-up was spotty, as was enforcement.  “Inconsistency in the application of standards can result in dangerous situations continuing unchecked,” Mr. Marin warned the Ministry.

I have written about this issue for years. Staff, specifically unregulated Personal Support Workers (PSWs) receive a wide variety of training in various institutions. Many employers give in-service training, bless them. Mentoring is a good way to ensure the highest quality delivery of services.


That said, employees are not monitored, after they graduate with a certificate. In fact, I do not believe a certificate is enough to ensure that workers providing the most intimate of care to our loved ones give the type of care that each individual deserves. Midwives get more training, and make house calls. I have long advocated for midwives for palliative patients. They need help ushering themselves out of this world, as much as entering the world.


That is not to say that there aren't exemplary professional caregivers in the 513 for-profit institutions in Ontario. There are about 640 non-profit institutions in this province alone. What is criminal is that in the for-profits decisions are based on the bottom line, not what is best for the client/residents.


One of my favourite PSWs
In addition, PSWs who are poorly trained, or simply poor choices for this type of work may be fired, but can freely go from employer to employer with no consequences. Issues of theft, inappropriate treatment of residents and clients, elder abuse and neglect, and sexual abuse of clients will go under the radar as a for-profit institution avoids the police and gives the PSW a half decent reference to get her off their staff. The for-profits are avoiding negative publicity and the non-profits must feel the same way.


It is appalling.


When I was Family Council chair of my father's LTC institution (a legal requirement in Ontario, like Parent Councils in schools), many of the complaints revolved around the ways in which all of the PSWs treated all of the clients the same way. It was hard to convince them, for example, to put an undershirt on my Dad under his sweatshirt. He was cold all of the time. I left sticky notes on his armoire. I spoke to staff. With all of the paperwork, many didn't have time to prebrief for these small problems. Those with behavioural issues, as well as serious health issues had all the attention.


My father in LTC was there for dementia and a brain tumour. The woman across the hall, a paraplegic (I wrote about them both in my book), was required to get out of bed and come to meals. Neither wanted to do so. In my father's case, he was palliative, and despite my protestations, they would haul him down to a meal he did not want. 


Add to the mix, another resident in her 30s, who was there with brain damage from an accident. She yelled, stole from residents. My father pulled the fire alarm, and had fist fights with other men in wheelchairs. The benign senior in LTC is a myth!


These are our precious family members. It is time the government regulated these workers. We need care suited to the client, not the institutions or managers desperate to save a buck by limiting the number and timing of adult incontinent product ('diaper') changes. We need to know that institution managers interpret Ministry rules properly. Each resident is entitled to individual care suited to his or her medical issues.
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Tuesday, January 11, 2011

Patient Advocacy, death and dying

Another ridiculous article about adult children caring for dying parents.
There’s no manual for home death

by ANDREA LAWRENCE From Monday's Globe and Mail

This writer is just plain wrong. There are many manuals. The books abound. From the Cancer to the Alzheimer Societies. 
Health care professionals are continually in denial. They refuse to speak of the subject. Like the physician in this article, they do not create treatment plans, discuss the issues with family members, and while end-of-life timelines are difficult to predict, they must be dealt with.

It takes people, like myself and Hospice Primary Care advocates and volunteers, who educate families.
 
Physicians keep their heads in the sand. I told the story of one who marched into the room where I was sitting quietly with a client and declared, "She just won't die!"

Much literature abounds, many, like me, have written memoirs and researched self-helped books meant to educate. You'd think, after all this time, that we would have learned help each other to care for dying loved ones. Many of us have, but too late.

I continue to advocate for a midwife/doula, better and more trained Personal Support workers (PSWs), who will work with families. For it is not just the parent who dies, but it affects the entire family. 
 
We need PSWs who are regulated, and uniformly trained, and all of our physicians to have geriatric and palliative training, as many of our nurses possess. 
 
All of them should have such training, as should all those who work in long-term care.

Training, awareness and education. Government sponsored hospices, patient navigators, this is what we need.

 
 
Many lobbying for change in this area of Canadian healthcare...

Canadian Association of Patient Centered Health
Led by a Canadian dentist, a 'grassroots' organization.
Patient Destiny A doctor of U of T., patient empowerment and electronic health records.
Finding healthcare.ca  - Janet Walker
Canadian Patient Coalition - Canadian patient summit of March, 2010
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Monday, January 10, 2011

Palliative Care Conference in April


Mark your calendar and plan to attend the third annual "One Vision One Voice" conference being held from Sunday, April 10 to Tuesday, April 12, 2011 at the Sheraton Parkway Toronto North Hotels. The Hospice Association of Ontario and the Ontario Palliative Care Association will be your hosts, and we are delighted to announce that we have confirmed three powerful keynote speakers who will be joining us this year. 

They include 
Senator Sharon Carstairs, P.C., a tireless champion for hospice palliative care in Canada; 
Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association; and 
Dr. Brian Goldman, an Emergency Physician at Toronto’s Mount Sinai Hospital, and the host of the CBC Radio One show White Coat, Black Art. Online registration for the conference will be available in January; we will inform you when it’s up and running.

This year's conference will be a 2 1/2 day "jam-packed" event. We've also reduced the registration fee (with no HST) from last year. To get more information on the event, registration fees, and hotel accommodation, check out our website at www.hpcconference.on.ca.
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Sunday, January 9, 2011

Home support Case study #14

Case study #14

You've been assigned to care for a senior in her home. Recently discharged from hospital, she has requested that your two hours of assigned care includes:
1) vaccuuming her carpet
2) fixing her lunch

She refuses the care, doesn't believe she deserves it, and continues to tire herself out cleaning up before the caregiver visits. Her daughter is at her wit's end, working full time, and attempting to encourage her mother to accept the help, to curb her activities while her body heals.

The daughter, working full-time, is at her wit's end. On antidepressants, her demanding job is frustrating her. She drives 60 km to work, and then drives home at the end of the day. Home Care is designed for individuals, not a family. The daughter moved to care for her parents. Her father is frail, and fighting the return of a brain tumour. Her brother has taken 5 weeks off work to drive the father to radiation treatments a two-hour drive to the city.

The senior continues to make lunch for family, tiring herself out. her generation is used to valuing herself by how much she cares for her family. She stands at the sink, hands shaking from her frailty and her medications, as she creates a meal.
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Case Study #13 IADLs

Here is a couple today who are awaiting placement in long-term care.
Wife:
  •  85 years old
  • hard of hearing
  • congestive heart failure
  • Cannot use the oven without supervision
  • Has no transportation to appointments, therapies or for errands
  • Needs to visit the optometrist.
Husband:
  •  91 years old
  • Diagnosed with dementia (which is getting quite advanced) and depression.  
  • Shows signs of jealousy (to female staff/volunteers) and paranoia.  
  • Celiac disease (gluten allergy)
  • No local family support.  
  • Needs to visit the dentist.
What roles should various home care provides fulfill while they live in limbo like this, unable to complete their IADLs?
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Psychological impact of a diagnosis on a family


To quote the pros:
“Some deal with the issues very openly and directly, while for others, their communication is very stressful, conflicted and characterized by avoidance,” he said.
This is an excellent article: 
Cancer survivor aims to use experience to inspire
This mom worked hard or her daughter's psyche, while dealing honestly with her daughter and her own breast cancer.

This is so true for children, even adult children. Death and bereavement issues affect more people than we will ever know. Mental health issues, like depression, are kept silent and denied, while families struggle to deal with the situation.

How children cope when a parent has advanced cancer. by VL Kennedy - 2009 There is little information regarding the nature of this distress and how children cope, particularly when a parent is diagnosed with advanced cancer.

Ann Med Psychol (Paris). 1992 Oct;150(8):537-55.
Psychological impact of cancer on the family: a review
Mormont C., Université de Liège.

Abstract

The impact of cancer on the patient's family and caregivers is important and it can be analyzed in terms of coping strategies. It depends on the patient (age, sex, role ...), the illness (site, stage, state ...), the people (parents, siblings, caregivers ...), the time (diagnosis, treatment, death, after death rehabilitation), the prognosis. The survey of the literature underlines the methodological difficulties met in this complex field and the distress of the family and caregivers at each stage of the illness, even during long term remissions.

Managing Emotional Effects of cancer

Compas (author, PhD.) explores psychological effects of cancer




The Number One Reason Why Caregivers Get Sick: Stress and worry



How to Convince Your Parent to Move to Assisted Living
We know you're convinced they need to go to assisted living, but how do you get a parent who is stubborn and angry about going to the "old folks home" to make the big move? We've got 9 tricks that will convince your parents they need to go to assisted living.

The above is an excellent article. For, if ailing seniors insist on acting like children and living dangerously, they must be treated like children unable to make good decisions about their own care and health. Some become so demanding, insisting on help at all hours, that it is up the the adult children to make decisions that will make sense for the entire family. Some, without transportation or family to help them are enabled to live dangerously by good-hearted, but misled neighbours, who step in to help.


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Friday, January 7, 2011

Caregiver Depression

Ideally, early in the relationship between the nurse and the caregiver such issues are addressed. The big move is to encourage a Case Manager to deal with the family, not just the patient.

 Depression can appear anytime along the caregiving continuum and must be addressed by the team. Depression can be assessed easily by two simple questions:
(1) During the past month, have you often been bothered by feeling down, depressed, or hopeless?
(2) During the past month, have you often been bothered by little interest or pleasure in doing things? These questions have been studied and repeatedly demonstrate accurate identification of depression.

Nurses should ask these questions to the caregiver and the patient and document the findings. If the questions are answered in the affirmative, the caregiver should be referred to his/her primary healthcare practitioner for assistance with addressing the depression symptoms. The patient's primary physician should also be consulted and alerted to the patient's symptoms of depression if this is a new or unaddressed problem.

What is the solution? Here is a good one, especially with the Canadian dearth of geriatricians, many of whom are not particularly adept at handling palliative care.
Hospice and palliative care: 
The time to get involved is now


Physician Assistants, as well as Nurse Practitioners.
 These people can act as midwives or doulas, and support the family in ways that never have been done before. There is no reason that family members should suffer as much as the palliative patients, with all the information and the supports that are out there. There is no reason for palliative patients to be in pain. 

We should demand Pain Management Kits, moral, spiritual and emotional support.

Unfortunately, by the time a patient is dying, much of the damage has been done. Caregiver stress is a huge burden on society. Until we are granted more support, and we regulate the home care, health care industry, adult children and caregivers will continue to suffer and burn out.
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Learning from our stories


I first started supply teaching with CBE and OBE, 1982.
Full time in 1989 in CBE, then OCDSB in amalgamation! I used to teach computer workshops to peers.
Then, I moved in April 2006 to Muskoka to care for my parents, who were dying. 
I had a teaching job in Parry Sound ( 62 km away, NNDSB) teaching Anger Management students.
 Mom died 6 weeks after I moved there doing this horrible job, I was away in Toronto giving three workshops at a ETFO Women's IT conference. No one told me how ill mom really was. (Mother's Day weekend).

 I managed to find a transfer to another NNDSB in Humphrey only 40 km away, I lasted there about a month, with a principal who was a bully, ended up on antidepressants, having put Dad into a retirement home, and then long-term care. I retired in December, when I turned age 50, clinically depressed. Dad died in Feb. 2007 from his brain tumour (the dementia was horrible).

I wrote a book about it (see the sidebar). I now give presentations on senior's and senior health. I worked for a Transfer Payment Agency, coordinating blood pressure workshops, presented to caregiver and other (e.g. MS, stroke) support groups on heart health.

We ended up back here to be closer to the grandkids (3 yrs., and 8 mos. old girls!).
Life is different. I miss teaching. I'm still second guessing what might have happened if we hadn't moved the 430 km to Muskoka. But it was a wonderful 4 years by the lake, for the most part.
This is a huge decision adult children make daily: do we move, take our parent(s) in, pay for more help?
This daughter had an issue with her hospital.

Health system failed our mother

‎
Edmonton Journal
 
The mom was 3 hours on a bedpan, with a call button that was unplugged. You'd think that the hospital would have better staffing than this. The family brought mom home, but had difficulty getting a home care program in place through the government services.
 
'Because my mother's home is in a rural area, we had to hire private caregivers to assist us. We did this feeling confident that reimbursement would be forthcoming through the government s "self-managed care program." '
 
What bothers the daughter is,
Finally, on Dec. 23 the social worker arrived to do the assessment required to activate the self-managed care program. We were told that the paperwork would be "rushed" but that it would not be retroactive.

Mom died on Dec. 27, with her life savings greatly reduced by the palliative care costs.

I'd be more worried about her treatment in hospital and ensuring this doesn't happen to others, rather than protecting my inheritance. Far too few people have not got the savings and resources to pay for private home care. I am rather shocked with the response the daughter has had from the media.
Think of those without the means to pay for such support. This also indicates the disparities between rural and urban home care.
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